This page is an effort to collect information which may be useful to others with ocular histoplasmosis, or anyone looking for information about the disease.
If you have histo, please Add to this survey we are keeping!
Name:Stacey Wales
Location:Mirtle Beach, SC US
Date of First Histo Occurence:
Affected Eyes:
Other Stresses at Those Times:
Laser Surgeries:. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:
Nutritional Supplements:
Vision Products Used:
Additional Comments:Hey there. I research home equity loans regarding mortgage financing headaches. Home equity loans work even if you have a second mortgage or no home equity . You can even do some debt consolidation too.
Date: -
Name:Amy
Location:San Diego, CA US
Date of First Histo Occurence:
Affected Eyes:
Other Stresses at Those Times:
Laser Surgeries:. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:
Nutritional Supplements:
Vision Products Used:
Additional Comments:Hello! Amy Catering San Diego California. Thank you for letting me sign your guestbook and thank you for your website. Glad you are here.
Date: -
Name:Beatrice
Location:Cleveland, Ohio US
Date of First Histo Occurence:
Affected Eyes:
Other Stresses at Those Times:
Laser Surgeries:. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:
Nutritional Supplements:
Vision Products Used:
Additional Comments:Hi Everybody. Wish I did your graphics. Great work. I found you at a free dating service site for adult personals believe it or not. One of the personal ads at the dating service referred to your site as a favorite. Amazing what you can find doing online dating huh? Email me if you want at beatrice_tran@hotmail.com.
Date: -
Name:jane. Email: <jfwilson@ipa.net>
Location:Batesville,AR, USA
Date of First Histo Occurence:May ,2002
Affected Eyes:Right
Other Stresses at Those Times: Divorce, depression,hypertension
Laser Surgeries:2. Results: Stopped leakage, have lost vision in inner
aspect of eye
Sub Macular Surgeries:. Results:
Other Medical Treatment:
Nutritional Supplements: Spring Valley eye formula, 2 daily. Notice more blurring when not taking
these vitamins`
Vision Products Used: Already wore prescription bifocal glasses
Additional Comments: I am a licensed practical nurse with lots of reading and charting. Was first treated in June 2002. Have had two laser surgeries and had the dye test 4 times in past 3 months. Another one scheduled for Sept. 27th. I was told I had a 50/50 chance of it coming back in the same eye, and almost no chance of having problems with the left eye.
Date: -
Name:jane. Email: <jfwilson@ipa.net>
Location:Batesville,, USA
Date of First Histo Occurence:
Affected Eyes:
Other Stresses at Those Times:
Laser Surgeries:. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:
Nutritional Supplements:
Vision Products Used:
Additional Comments:
Date: -
Name:Sharon. Email: <SBrown35@neo.rr.com>
Location:Malvern, Ohio USA
Date of First Histo Occurence:June/2002
Affected Eyes:Right only (so far)
Other Stresses at Those Times: Over the past year or two have been going through menopause,causing dry eyes...have scratched cornea several times...more stress at work than usual
the past couple years...have had increasing aches and pain in joints as well
as muscles. RA is in my family, but bloodtests for several types of artritis didn't show anything.Could it be related to the Histo in my eyes;I wonder...
Laser Surgeries:none. Results:
Sub Macular Surgeries:none. Results:
Other Medical Treatment:none (so far) - I'm choosing to do "nothing",at this time...there are "good" reports and "bad" reports from various treatments.I will try vitamins first...if this progresses too much,then I will consider additional treatments. Some people seem better off having had no treatments at all. The Dr. said he can make me no promises.
Nutritional Supplements:Was taking vitamins before (multiple,w/extra C,E,B complex & calcium);Now have added on any vitamins that I've read are good for eyes: "Vision Essentials"(combo); Grapeseed ext.; Quercetin/Bioflavoid complex;Co-enzyme Q10; Flaxseed,Primrose,& Fish oil comb.; and just added "Shark cartilage" to that list. (+taking more Vit.C now)
Vision Products Used:Glasses for nearsightedness since age 8.
Additional Comments:I've lived my whole life in the Histo belt...Ky,W.Va,and Ohio. Have no idea WHICH of a MILLION places I could have contracted Histo. I've been around birds,chickens,farms and farm animals all my life! I own chickens even now! I've gardened in (dirt),been around construction sites,been around livestock & poultry auctions,etc.etc....This condition has thrown me for a loop,but thanks to this site,I feel more informed than when I came out of the DR.'s office. I'm dealing with it the best I can,with God's help. So far,I am grateful it has affected only my right eye.After reading some posts from people who have had Histo for years and are now legally blind...it is really scary not knowing what will happen in the future. It has definitely changed my outlook on life a lot; I "look" at life with more appreciation for the blessings God has given me,and I pray each day now for a cure, not just for me,but for everyone posting on this site. May God give us the strength to do the best we can in this.
Date: -
Name:Freelance Writer
Location:Mission Hills, CA US
Date of First Histo Occurence:
Affected Eyes:
Other Stresses at Those Times:
Laser Surgeries:. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:
Nutritional Supplements:
Vision Products Used:
Additional Comments:Very nice site. I think I can spruce up the writing though. I write professionally and web content writing is part of what I do. I also write business letters and comedy . Feel free to visit my website.
Date: -
Name:Search Engine Optimization Placement. Email: <seoplacement@yahoo.com>
Location:LA, CA USA
Date of First Histo Occurence:
Affected Eyes:
Other Stresses at Those Times:
Laser Surgeries:. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:
Nutritional Supplements:
Vision Products Used:
Additional Comments:Hi!! My name is Victor. I like your website design very much. You have wealth of information on your site. I recently got into learning web site promotion, submission to search engines for free and online internet marketing myself. I am doing research on improving my skills in search engine optimization and placement, keyword marketing research, and pay per click management. I have made small websites where you can buy discount inkjet printer ink cartridges, cheap refill kits, laser toners for HP Epson Canon Lexmark printers and another site that sells free direct tv dish satellite network. I like to play and copy playstation and ps2 games and
copy dvds videos cds divx decss. Don’t forget to visit my site if you ever need to buy discount remanufactured ink jet cartridges, cheap refills and laser toners for HP Epson Canon Lexmark printers . Thanks for your time and keep up the good work.
Nice Site!! Delighted to Visit It!! Great Content!!
Date: -
Name:Search Engine Optimization Placement. Email: <seoplacement@yahoo.com>
Location: USA
Date of First Histo Occurence:
Affected Eyes:
Other Stresses at Those Times:
Laser Surgeries:. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:
Nutritional Supplements:
Vision Products Used:
Additional Comments:Hi!! My name is Victor. I like your website design very much. You have wealth of information on your site. I recently got into learning web site promotion, submission to search engines for free and online internet marketing myself. I am doing research on improving my skills in search engine optimization and placement, keyword marketing research, and pay per click management. I have made small websites where you can buy discount inkjet printer ink cartridges, cheap refill kits, laser toners for HP Epson Canon Lexmark printers and another site that sells free direct tv dish satellite network. I like to play and copy playstation and ps2 games and
copy dvds videos cds divx decss. Don’t forget to visit my site if you ever need to buy discount remanufactured ink jet cartridges, cheap refills and laser toners for HP Epson Canon Lexmark printers . Thanks for your time and keep up the good work.
Nice Site!! Delighted to Visit It!! Great Content!!
Date: -
Name:Cisco
Location:Bogota, Putumayo Colombia
Date of First Histo Occurence:
Affected Eyes:
Other Stresses at Those Times:
Laser Surgeries:. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:
Nutritional Supplements:
Vision Products Used:
Additional Comments:Hello my name is Cisco. English language is my second language . I visit sites like yours to learn new english vocabulary words and improve my english grammar . I hope to have effective communication and business communication for a new job in US. I learned a new word of the day from your site. I plan to be public speaking and business writing better now from your site. Thank you.
Date: -
Name:cheap flights
Location:Chicago, IL US
Date of First Histo Occurence:
Affected Eyes:
Other Stresses at Those Times:
Laser Surgeries:. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:
Nutritional Supplements:
Vision Products Used:
Additional Comments:Hi! I was just passing through your site and thought I'd mention that I specialize in cheap international flights. If you international flights with low fares are something you are looking for, email me at cheap_flights@hotmail.com
Date: -
Name:Vicki. Email: <vchristy@softcom.net>
Location:Sacramento, CA USA
Date of First Histo Occurence:8/6/02
Affected Eyes:Right
Other Stresses at Those Times:Two weeks before this flared up I had a hernia surgery...my first time under general anestesia.
Laser Surgeries:2 - one hot, and one PDT. Results:The PDT was just a week ago. I have noticed that the spot in my central vision seems to be smaller. I don't know if it's just the bleeding stopping. I will be rechecked in 6 weeks...we'll see then.
Sub Macular Surgeries:none. Results:
Other Medical Treatment:I have had 3 c-sections, and have had high blood pressure and hypo-throidism for 18 years. I take medications for both.
Nutritional Supplements:no
Vision Products Used:I am extremely near-sighted so I wear contacts, and occasionally glasses
Additional Comments:I am currently very depressed about the permanence of this disease. I have have no idea how I could have ended up with it. We moved around alot as a kid and the closest I was to the histo belt was Minnesota/Wisconsin for a very short period of time. I currently live in CA where this is almost unheard of. Luckily, my retinal doctor trained in St. Louis so he is very familiar with it. I am only 34 with 3 young kids and it's already affecting the central vision of my right eye. AND I found out I have spots in my left eye that they have to continue to monitor. I would appreciate hearing from anyone in CA since there seems to be so little support out here since nobody has even heard of this disease.
Date: -
Name:Mary. Email: <maryalbrecht@wi.rr.com>
Location:Silver Lake,, WI USA
Date of First Histo Occurence:5/02
Affected Eyes:Both
Other Stresses at Those Times:I've had a very stressful past 3 years. I'm an elected local official and it's nothing like I thought it would be. People are cruel for the fun of it. Anyway I'm also going through menopause and had a 1 year problem with Stress Roseacia.
Laser Surgeries:2, 1 in each eye. Results:Small blind spot in lower left quadrant of my right eye - too soon to determine what's going on in left, surgery 3 weeks ago.
Sub Macular Surgeries:none. Results:
Other Medical Treatment:
Nutritional Supplements:Yes, too many to mention 37 vitamins, supplements and herbs daily for almost 5 years. By the way bilberry was a lie made up by the English to 'cover-up' their discovery and use of Radar. It won't help for vision, but it gives you a fighting chance against vericose veins.
Vision Products Used:contacts, glasses, magnifiers.
Additional Comments:No one can tell me much about this. I've learned more looking at this sight than at the specialits office. I'm so frustrated with "don't know", and yesterday when I asked "am I going to be blind soon" the answer I got was "not necessarity, not completely"
Date: -
Name:Lynn Cleckler. Email: <cleckler1@yahoo.com>
Location:Dallas, Texas USA
Date of First Histo Occurence:1986
Affected Eyes:both
Other Stresses at Those Times:I was diagnosed with Ocular Histoplasmois in 1986 - it had already destroyed the central vision in my left eye at that time. While the right eye was damaged (had holes and scaring) it pretty much lye "dormant" until Sept. 2000 when leakage started. Since that time I have had six PDTs - some lasted as long as 8 months - some less than 4 weeks. It is a hard disease to deal with and you always wonder "why me" - but you can survive and work full time with one eye - I know, I have done so since 1986 and have been a legal secretary since 1983 working with heavilly rvised documents, faxes, and computers daily. Email me if I can help you.
Laser Surgeries:6 PDTs-. Results:Some lasted 6 - 8 months - others 4 weeks or less.
Sub Macular Surgeries:. Results:
Other Medical Treatment:Allergy shots since Jan. 2000.
Nutritional Supplements:Yes, multiple vitamins, green tea, lots of spinach and blueberries.
Vision Products Used:Yes, a fabulous new machine called the Merlin - it has helped me in my work 100%!!
Additional Comments:Feel free to email me - support for each other means a lot! I understand.
Date: -
Name:Mary Kay. Email: <iloveweetabix@yahoo.com>
Location:Milwaukee, WI USA
Date of First Histo Occurence:1997
Affected Eyes:right
Other Stresses at Those Times:1997-lost gall bladder 1 month after (high stress time in my life). 2001 second occurance-depression
Laser Surgeries:1 laser, 2 PDT. Results:legally blind in right eye
Sub Macular Surgeries:. Results:
Other Medical Treatment:
Nutritional Supplements:
Vision Products Used:glasses and contacts
Additional Comments:
Date: -
Name:GLORIA. Email: <GLOAF1@HOTMAIL.COM>
Location: ARKANSAS USA
Date of First Histo Occurence:RIGHT EYE 1991 -LEFT EYE 1999
Affected Eyes:BOTH
Other Stresses at Those Times:JOB RELATED IN 1991. THE OTHERS OCCURRENCES WERE DURING A YEAR OF A COMPLETE UPHEAVAL IN MY LIFE THAT ENDED IN A DIVORCE.
Laser Surgeries:3 PDT LASERS . Results:STOPPED BLEEDING AT THE TIME BUT WOULD START AGAIN. DID NOT IMPROVE MY SIGHT. I HAVE SLOWLY LOST NEARLY ALL VISION IN THE CENTER BUT PERIPHERAL IS GOOD.
Sub Macular Surgeries:N/A. Results:
Other Medical Treatment:WHILE I WAS WAITING FOR PDT TO BE APPROVED FOR HISTO THE DOCTOR PUT ME ON A REGIMEN OF PREDNISONE WHICH SEEMED TO CURTAIL THE BLEEDING.
Nutritional Supplements:MULTI VITAMIN AND COMBINATION FOR EYE HEALTH,
Vision Products Used:HAVE A CCTV THAT I COULD NOT LIVE WITHOUT, SPECIAL GLASSES JUST FOR USE WITH THE COMPUTER AND ALSO HAVE A 21 INCH MONITOR AND OF COURSE COMPUTER HAS LARGE PRINT. I ALSO USE SMALL HANDHELD MAGNIFIERS.
Additional Comments: YEARS AGO AN OPTHAMOLOGIST TOLD ME I HAD A CLASSIC CASE OF OCULAR HUSTO.LITTLE DID I KNOW HOW THAT WOULD CHANGE MY LIFE YEARS DOWN THE ROAD. AS A CHILD IN NORTH ARKANSAS I WAS FOREVER RESCUING BABY BIRDS THAT HAD FALLEN OUT OF THE NEST. WHEN THE MOTHER WOULD NOT TAKE THEM BACK, I WOULD TAKE CARE OF THEM UNTIL THEY COULD FLY. I AM CONFIDENT THAT IS WHERE I ACQUIRED THIS DISEASE. IT HAS REALLY BEEN DIFFICULT LOSING THE INDEPENDENCE THAT DRIVING ALWAYS GAVE TO NE AND LIVING ALONE IN THE COUNTRY MAKES IT THAT MUCH WORSE. I STILL DO MY OWN COOKING AND HOUSEWORK AND WITH THE HELP OF MY CCTV BALANCE MY CHECKBOOK. I AM THANKFUL FOR THE SIGHT IHAVE LEFT AND HOPE AND PRAY THAT I HAVE NO MORE EPISODES. THERE ARE A LOT OF ADJUSTMENTS TO BE MADE IN ONE'S LIFESTYLE BUT IT CAN BE DONE. I APPRECIATE THE OPPORTUNITY TO SHARE MY EXPERIENCE WITH OTHERS AS THEY HAVE SHARED WITH ME.
Date: -
Name:michelle. Email: <ccrd58@aol.com>
Location: Louisiana USA
Date of First Histo Occurence:Oct. 2001
Affected Eyes:right
Other Stresses at Those Times:Pneumonia 6 months prior to onset
Laser Surgeries:1. Results:some reduction influid, but no change in visual acuity
Sub Macular Surgeries:. Results:
Other Medical Treatment:PDT twice. Just had 2nd one results not yet known. Also, took Sporonox4 months and Diflucan 2 months. Some reduction in fluid noted, but new blood vessels grew anyway.
Nutritional Supplements:multi vitamin
Vision Products Used:no
Additional Comments:I am filling this in for my daughter. She was 14 at the onset of this disease and turned 15 in June. We are very worried but pressing on with treatments being made available to us.
Date: -
Name:heather
Location:margate, kent england
Date of First Histo Occurence:july 2002
Affected Eyes:both
Other Stresses at Those Times:none
Laser Surgeries:-. Results:-
Sub Macular Surgeries:-. Results:-
Other Medical Treatment:-
Nutritional Supplements:-
Vision Products Used:-
Additional Comments:I have just been diagnosed, I live in England and only visited the US on two occasions (Texas Arizona New Mexico & California) for 2 weeks. MY eye doctor has seen spots behind my eye and I have to go back in three months to have more photos done to see if theres any change. I am confused and worried for the future and no one here seems to know about this disease.
Date: -
Name:Internet Marketing
Location:San Francisco, Ca US
Date of First Histo Occurence:
Affected Eyes:
Other Stresses at Those Times:
Laser Surgeries:. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:
Nutritional Supplements:
Vision Products Used:
Additional Comments:Hi to you and your guests. My name is Jazz (Mom liked jazz music). I recently got into the web site promotion business. Are you interested in some online marketing help with your site. I do search engine optimization, keyword marketing research, and pay per click management. In short, internet advertising. If interested, email me at delgato2002@hotmail.com.
Date: -
Name:Cynthia
Location:San Diego, Ca US
Date of First Histo Occurence:
Affected Eyes:
Other Stresses at Those Times:
Laser Surgeries:. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:
Nutritional Supplements:
Vision Products Used:
Additional Comments:Greetings to you and your guests. Love what you’ve done with your site. As an educator I can say you have great communication skills.
Date: -
Name:Dawn Hunter. Email: <markmywords@msn.com>
Location:Toronto, Ontario Canada
Date of First Histo Occurence:November 2001
Affected Eyes:right
Other Stresses at Those Times:asthma
Laser Surgeries:. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:none
Nutritional Supplements:none
Vision Products Used:none
Additional Comments:I am not a candidate for any laser surguries. I was already extremely myopic, making my retina paper thin. Any laser surgery could tear it completely and cause complete blindness. Since surgery can't restore what I have lost, it isn't worth the risk.
Date: -
Name:Sharon. Email: <angel55ooo@aol.com>
Location:San Antonio, Texas USA
Date of First Histo Occurence:July 1971
Affected Eyes:Both
Other Stresses at Those Times:I am losing the sight in both eyes little by little. I have had Breast Cancer. I was told this was not actived.
Laser Surgeries:none. Results:
Sub Macular Surgeries:none. Results:
Other Medical Treatment:
Nutritional Supplements:yes
Vision Products Used:Very thick glasses
Additional Comments:
Date: -
Name:Sharon. Email: <angel55ooo@aol.com>
Location:San Antonio, Texas USA
Date of First Histo Occurence:July 1971
Affected Eyes:Both
Other Stresses at Those Times:I am losing the sight in both eyes little by little. I have had Breast Cancer. I was told this was not actived.
Laser Surgeries:none. Results:
Sub Macular Surgeries:none. Results:
Other Medical Treatment:
Nutritional Supplements:yes
Vision Products Used:Very thick glasses
Additional Comments:
Date: -
Name:Sharon. Email: <angel55ooo@aol.com>
Location:San Antonio, Texas USA
Date of First Histo Occurence:July 1971
Affected Eyes:Both
Other Stresses at Those Times:I am losing the sight in both eyes little by little. I have had Breast Cancer. I was told this was not actived.
Laser Surgeries:none. Results:
Sub Macular Surgeries:none. Results:
Other Medical Treatment:
Nutritional Supplements:yes
Vision Products Used:Very thick glasses
Additional Comments:
Date: -
Name:Sharon. Email: <angel55ooo@aol.com>
Location:San Antonio, Texas USA
Date of First Histo Occurence:July 1971
Affected Eyes:Both
Other Stresses at Those Times:I am losing the sight in both eyes little by little. I have had Breast Cancer. I was told this was not actived.
Laser Surgeries:none. Results:
Sub Macular Surgeries:none. Results:
Other Medical Treatment:
Nutritional Supplements:yes
Vision Products Used:Very thick glasses
Additional Comments:
Date: -
Name:Angela Jones. Email: <adjones1@msn.com>
Location:Brandon, Mississippi USA
Date of First Histo Occurence:March 1996
Affected Eyes:both now
Other Stresses at Those Times:I found out only today that I have OHS. Until today, I have been repeatedly advised that I had Macular Degeneration. And still don't understand why my regular retinal specialist didn't just tell me what was wrong in the first place. Until today, I truly had no idea what was going on other than I was losing my eyesight.
Today I went to another doctor for a second opinion at the urging and encouragement of my husband, parents, and siblings. This doctor explained what I had, how I got it (presumably), and how to monitor it progression.
The initial onset in 1996 came on suddenly. The events in my life at that time were tramatic enough as I had just completed a lawsuit for harrassment against my employer and broken up with my boyfriend of 6 months at the time. The retinal specialist I was referred to did surgery on my eye. I found out today that the surgery he did was a type (less refined version) of a subretinal surgery. It resulted in an 95% loss of central vision in my left eye (the only eye affected at the time). Afterwards, he explained that I had a disease called Macular Degeneration and that there was no cure and that eventually I would go blind.
Over the years that have followed I have also had lots of female problems (diagnosed with PID, Cervical cancer, tumors, cysts, and most recently endometrial cancer that resulted in a hysteretomy last year). For awhile, each visit to my ob/cyn resulted in a visit to my retinal specialist (or vice versa).
Last May, I was told that the disease had started in my right eye and that it was a matter of time before I would lose my central vision and be legally blind. I have pretty much just been waiting for it to happen. I am a very impatient person and the wait is still not over.
I have an extremely stressful job and they are not taking too kindly to my being off work right now (even though I am on medical leave for the time being).
My visual acuity is still good in my right eye but I now have a blind spot that leaves most of the upper left quarter of the amsler grid blank to me and still have/see distortion around the blind spot in 3 places.
But the good news is my vision isn't bad enough to be consider "low vision" yet as I have approx. 20/30 vision on a good day (worse on a bad day). And if I am real careful I can still drive my car, but it scares me to death as I generally cannot see oncoming traffic.
Laser Surgeries:6 or 7 now. Results:immediate and progressive vision loss with each one. 3 or 4 on the left eye and 3 so far on the right eye and possibly another one tomorrow(7-2-02), including 1 PDT. All have been successful so far (so I have been told).
Sub Macular Surgeries:1. Results:immediate loss of approx. 95% (if not more) of my central vision in my left eye. But they say it was a successful surgery.
Other Medical Treatment:no
Nutritional Supplements:No
Vision Products Used:magnifying glasses with the computer and for reading because they make reading easier for me (but the doctor says I don't need them).
Additional Comments:Only that I am scared, terribly depressed, and hope that this will all be over soon so I can get on with the rest of my life (whatever it may be).
Date: -
Name:Elizabeth Morse. Email: <emorse@iastate.edu>
Location: Iowa USA
Date of First Histo Occurence:May 1997
Affected Eyes:Left
Other Stresses at Those Times:I am a music major. In Feb. 97, I noticed that the music staff lines were all crooked. I went to my opthalmologist and he said I had active histoplasmosis. He did a laser on me and all was fine. In Sept. 1997, it got much worse much quicker. I went from seeing 20/20 in my left eye to 20/200 then to 20/400 in about a two week time slot. Just prior to the first occurance (May 1997), I had tremendous headaches. My regular physician diagnosed me with migraines. I didn't really believe I had migraines since I was able to function normally (do kitchen chorse, make a huge Sunday dinner and bake two pies all while listening to the radio). My understanding of migraine headaches is that it usually incapacitates the people who suffer from them. I ended up having the submacular surgery in June 1998. I have not had any blood vessel regrowth from the histo scar tissue and amazingly enough, my headaches are now gone. Although I have not been told that the headaches were related to my eyes, I can't help but wonder. The vision in my left eye (with correction) is 20/400. I have a wonderful doctor and have not had any problems since the surgery in 1998. I don't know exactly the prognosis from the surgery but the longer I go without a recurrance, the better I expect the outcome will be. It is not an easy surgery to go through but in my own particular case, I feel it was worth it. I am sure each case is different and the decision on whether or not to undergo the surgery must be made with the understanding of what it entails as well as what will be expected of the patient to get the best possible outcome. It also helps to have a doctor you are completely comfortable and confident with. I am very lucky to have the doctor I do. He is wonderful. He also didn't do or say anything to terrify me about my condition. He patiently answered the many questions I had.
Laser Surgeries:1 (some laser during surgery). Results:I am happy with the results. I don't have my vision back but I can see better now with both eyes open than I did before the surgery.
Sub Macular Surgeries:1. Results:See above.
Other Medical Treatment:No
Nutritional Supplements:No
Vision Products Used:I use magnifiers when reading textbooks, doing needle work, and data entry at work.
Additional Comments:
Date: -
Name:Gary . Email: <gcris@iglou.com>
Location:Lexington, USA
Date of First Histo Occurence:July 2000
Affected Eyes:Right
Other Stresses at Those Times:Not particularly. I had just returned from a week long seminar and had driven approximately 15 hours straight through (not the first time I've ever done that in my life). For the next few days I thought my glasses needed adjusting which I had not had done in a few years. Needless to say it was quite a jolt when it was discovered that I could not see anything with my right eye. The optometrist who said I had a hole in my right eye, immediately arranged for me to see a rentinal specialist.
Laser Surgeries:None. Results:At the conclusion of what I have to admit was a most lengthy examination, I was told that I had Ocular Histoplasmosis Syndrome, that I had histo spots in both eyes, one of which had burst and bled and the scar tissue was too close to the fovea for laser surgery.
Sub Macular Surgeries:One. Results:I was selected to participate in a research project of Submacular Surgery Trials. I underwent surgery that is called Pars Plana Vitrectomy, Membrane Peel, Fluid Gas Exchange, Submacular surgery, Excision of Submacular Scar-right eye. I was provided with a most explicit set of post-operative instructions which included my keeping my head face down at all times for at least 2 weeks. It has been nearly 2 years since the surgery, and so far the physicians and I (even though I do not have central vision in my right eye) regard the operation a success.
Other Medical Treatment:I keep an approved supply of eye drops handy for times when my eyes feel particularly strained, reddened, or "sandy".
Nutritional Supplements:Nothing that was recommended. I make sure I maintain a healthy diet. I eat lots of DARK GREEN fresh vegetables which contain lots of Lutein & Zeaxanthin.
Vision Products Used:Yes. The work I do requires a lot of reading. I have several different types and sizes of rulers which have special see through magnifying srips that run the length of the rulers for when print is too faint or too small. I have prescribed sunglasses of the same prescription of my regular eyeglasses to avoid possible damage in sunlight. I have thought about getting one of those small collapsible white sticks that fold like a periscope just to carry in my pocket in case I found myself in a large crowd in strange surroundings and needed a little help getting my bearings.
Additional Comments:I always thought of histoplasmosis as a fungal disease which infects the respiratory system. When I was told I had it in my eyes - that really blew me out. It is indeed frightening to suddenly discover one's sight is at risk. Until this came along, I was one of those people who never had anything much physically wrong all my adult life. Mother Nature suddenly got my attention. The first thing I did, before agreeing to surgery or risk doing anything rash, was I immediately began researching what this was all about. I read 4 books on macular degeneration because I found that the sysmtons are very similar. One book was written by an opthalmologist who was himself a victim. I searched the internet worldwide of every .org site I could find, U.S., Canada, Europe, to learn who knew or didn't know much about this. I read more about bad experiences with laser surgery that I could keep track of. I went by recommendation and concensus of physicians I especially trusted for references of an opthalmologist who had background in this area so as to get a second opinion. I was assured that the retinal specialist who diagnosed me was one of the best in the U.S. I became proactive medically and I continue to be proactive where my health is concerned. Because of that I avoided another calamity that was close to happening. As to the eye surgery I decided to proceed with, I am glad I did it. The black spot I used to see out of my right eye is no longer black. It is now a faint gray with little peep holes. Whether it will ever get any better I don't know. I doubt it. I drive. I work my normal schedule. I'm not ignorant to the possibility that one day it could happen again in the other eye. The best I can do about that is rest right, eat right, and continue to be checked by the best at least twice a year. I accept and tolerate what I call a "social phopbia". It occurs when I am in a large crowd in unfamiliar surroundings. I am always afraid of someone handing me something and their letting go just a second too quickly and my appearing clumsy. I find people though are very understanding if one just admits to a slight vision impairment. I have read everyone's experiences and comments on survey site. I have learned from all your comments. I hope I will have made at least a small contribution to all of you and all who may follow. I welcome hearing from you. Please identify the subject as "HISTO" to defray my nervousness about opening strange emails.
Date: -
Name:kathridgewell. Email: <kathridgewell@yahoo.com>
Location:Aberdeen, Scotland, Great Britain
Date of First Histo Occurence:October 1997
Affected Eyes:1 both histo spots in other
Other Stresses at Those Times:breakdown in long term relationship, flu in the January of that year
Laser Surgeries:1. Results:regrowth within one month
Sub Macular Surgeries:1. Results:loss of central vision in right eye
Other Medical Treatment:before surgery was on predisolone and cyclosporin for over a year but when they tried to take me off the drugs the bleed returned leading to surgery.
Nutritional Supplements:taking "eye vites" at moment with vite and beta carotene also considering bilberry
Vision Products Used:can still read so ok for now
Additional Comments:any info would be helpful as living in britain not much seems to be know about this.
Date: -
Name:Maggie Willis Salazar. Email: <Maggie@the-home-zone>
Location:Houston, Tx. USA
Date of First Histo Occurence:1984
Affected Eyes:Right
Other Stresses at Those Times:Actually I don't remember any specific stress I was going thru. Sometimes
life if just stressful !
Laser Surgeries:Laser-One. Results:Stopped the hemmoraging in my eye but have a
blind spot.
Sub Macular Surgeries:None. Results:
Other Medical Treatment:Was given strong doses of Steroids after surgery which as I remember having
strong side effects.
Nutritional Supplements:No.
Vision Products Used:I've always been near sighted so I wear glasses.
Additional Comments:Thank you so much for all your comments. I am lucky to live in Houston, Texas which has a wonderful medical center. My surgeon was top notch. I was terrified and had never heard of the disease..really afraid of going blind as we all are. Its almost been 20 years and I've led a pretty normal life...thank God. I'm now 55 years old and my vision seems to be weaker so I am going for a check up this week to a new doctor who has taken over my file. God Bless all of you and thank you for sharing your stories.
Date: -
Name:Jane. Email: <bzecnly@hoosierlink.net>
Location:Akron, IN USA
Date of First Histo Occurence:Spring of 97
Affected Eyes:Both
Other Stresses at Those Times:First occurance approximately 6 months after ending a nasty divorce. Second onset could have been from stress after knee surgery. The rest I really can't think of any major stress
Laser Surgeries:5. Results:I am going to see my surgeon tomorrow. As of Friday was seeing or not seeing 20/200 in left eye. This seems to be the problem. I've had 1 laser and 3 PDT in left eye. One hot laser in right eye. Still seeing 20/20. When I went to my regular OD on Friday, I've got more swelling behind macula and fluid. Another leakage
Sub Macular Surgeries:none. Results:
Other Medical Treatment:My problem seems to be a great immune system. My body wants to keep fighting something that isn't there. My surgeon suggested getting AIDS or terminal cancer to slow this down. (LOL) But he said the side effects were pretty bad. He was joking
Nutritional Supplements:None, but the green tea sounds like something I might try. I love green tea!
Vision Products Used:I've worn glasses or contacts since I was 9. I'm now 38.
Additional Comments:
Date: -
Name:Jennifer. Email: <jnoel1273@aol.com>
Location: Michigan USA
Date of First Histo Occurence:Fall, 1995
Affected Eyes:Both and Chest, lungs and Heart
Other Stresses at Those Times:I was getting ready to graduate from college and get married.
Laser Surgeries:. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:medistenscopy (2)and medications
Nutritional Supplements:yes
Vision Products Used:yes, eye glasses and my vision seem to get worse as the years pass.
Additional Comments:I grew up in a wooded area and the house was damp and had problems with molds. We also had pets including chickens for a short time. I also grew up all farms and played in a barn a lot.
Date: -
Name:D. Wince. Email: <wince_74037@yahoo.com>
Location:Jenks, Ok USA
Date of First Histo Occurence:January 1980
Affected Eyes:Primarily the Right eye
Other Stresses at Those Times:Completing final semester of College
Laser Surgeries:. Results:Laser surgery for right eye wasn't an option as my doctor said the hemorrhage was too close to the center. The surgery was just too risky and it might cause me to lose the vision I had left.
Sub Macular Surgeries:. Results:
Other Medical Treatment:
Nutritional Supplements:Never taken any or heard that they could help
Vision Products Used:reading glasses but not related to histo, just old age
Additional Comments:Noticed vision problems during my senior year of college in January 1980. Went to optometrist then ophthalmologist then to retina specialist at Plaza area of KC. Doctors found some scaring in both eyes but most of my problem was in my right eye with no noticeable vision loss in the left. I lost reading vision in the right eye but peripheral vision is fine. Laser surgery for right eye wasn't an option as my doctor said the hemorrhage was too close to the center. The surgery was just too risky and it might cause me to lose the vision I had left. No noticeable vision change since the initial occurrence now over 22 years ago. The initial diagnosis of Histo was very scary as I felt I was going blind with a rare disease that no one really understood or could help. Since basically the doctors couldn’t do anything this also added to my fear. I did grow up in West Virginia along the Ohio River where occurrences appear to be prevalent. Also was around birds animals and farms growing up. I have been very fortunate, as my eyes have adjusted such that depth perception has never been a problem (played softball for years afterwards). I feel very fortunate compared to many who have this disease with far greater problems. I never experienced any other health problems that appear to be directly related to the disease. I do have apprehension anytime something minor happens to my eyes or vision. The best thing I did when I first experience this problem was pray to God. I told him I accept whatever the outcome was but trusted him to take me through this situation even if it meant I wasn’t going to be able to use the education I was about to complete. If I went blind or near blind I trusted that he would provide a way for me. I received a peace that day about my disease which I remind myself whenever I have doubts. While I know this may not be God’s answer for everyone I pray that this somehow helps anyone else out there that is dealing with this rare disease. God Bless.
Date: -
Name:Katy Nye. Email: <KatyN@WesternGroup.com>
Location:Wright City, MO USA
Date of First Histo Occurence:June or July of 1995
Affected Eyes:First the left and then six years later, the right also
Other Stresses at Those Times:Being only 17 when the first eye went wasn't a big deal. I wasn't worried, but shortly before I got married and turned only 24, the right one started and frightened me quite a bit!!! I seem to have health problems that are unexplainable!! Went to the emergency room one night for extreme abdominal pain and they still don't know what happened or what caused it!! I right now am being treated for terrible heartburn and thankfully after a scope I know that I don't have any lasting damage to the esophogus (?)
Laser Surgeries:1. Results:This one and only surgery was done on the right eye in 7/01. It has stopped the leakage from affecting my central site so that I only have a spot off to the right of my vision in that eye. The center vision of the left eye was already lost by the time that I noticed it! After the surgery, I was in and out of work for quite a while and not sure if I could return. There was some after affect that they had never seen that took quite a while to go away. It affected the center vision and I just figured that they messed up with the laser and blinded me, but thankfully, it went away
Sub Macular Surgeries:. Results:
Other Medical Treatment:Fighting depression
Nutritional Supplements:NO
Vision Products Used:Just contacts/glasses for the right eye.
Additional Comments:It's rather upsetting to think that I could go blind this early in life without a chance to see my future children. I have been told that there is a doctor working on a chip that will be inserted into the back of the eye and restore some of the lost vision. I just hope that this happens in my lifetime!! God bless to all that have to go through anything like this!!
Date: -
Name:Rob Taylor. Email: <momx4boys@hotmail.com>
Location:Hanscom AFB, MA USA
Date of First Histo Occurence:Sep 1999
Affected Eyes:Left
Other Stresses at Those Times:Was getting ready to PCS when this cropped up.
Laser Surgeries:4. Results:1 "Hot Laser" in 99 left me with a blind spot (just left of center) and a little area of 20/20 center vision. Lasted until Aug 2000 when I had a recurrence. Had PDT. That restored things to where I was before and held for 8 months. Had 3rd occurence in April 02 and had PDT again. Things improved for about 3 weeks but went south (was leaking again) and had another PDT in late May. Waiting for things to settle. Now have circle of blindness around center vision and center vision is still signifigantly reduced. Still can't read with it.
Sub Macular Surgeries:. Results:
Other Medical Treatment:n/a
Nutritional Supplements:Daily multi-vitamin.
Vision Products Used:No
Additional Comments:Grew up in Northeast Pennsylvania. Lived in town (not on a farm). Go figure. I work computers in the military so my vision is important to my career. Initally presented as noticing lines on my screen were wavy just top left of center. I just wish I could get this thing from re-leaking. Contemplating sub-macular surgery, but going with PDT right now. So far I have not had any problems with my right eye. Thank God! And am praying it stays that way. I can't catch a softball to save my life but can still drive! As a father of 4, I'm nervous about losing more vision and becoming dependent. I'd love to talk with others who are dealing with this. God bless all of you. All of us!
Date: -
Name:Edmund
Location:London, Kent England
Date of First Histo Occurence:
Affected Eyes:
Other Stresses at Those Times:
Laser Surgeries:. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:
Nutritional Supplements:
Vision Products Used:
Additional Comments:My name is Edmund Marco and it's a pleasure to sign your guest book. I work for an advertising agency in London. Our agency represents direct marketing companies that are involved in the marketing of products as seen on TV in England. Most of the infomercial products come from the U.S. but then again we export our talents as well. My brother has appeared in infomercials in the U.S. advertising various products. I think it's hilarious that English people respond so well to American products while Americans tend to respond well to sales people who have an English accent!
Date: -
Name:Louie P Hefner, Jr. Email: <hef1231@rectec.net>
Location:Colcord, Oklahoma USA
Date of First Histo Occurence:unknown
Affected Eyes:one eye has hole in it
Other Stresses at Those Times:hospitalized at Keesler AFB in 1958 due to loosing weight. Was treated as if I had TB.
Laser Surgeries:none. Results:
Sub Macular Surgeries:none. Results:
Other Medical Treatment:none
Nutritional Supplements:none
Vision Products Used:just wear glasses to read and drive. Last eye exam in Mar the Dr stated I neede cataract surgery.
Additional Comments:I grew up in Illinois and worked around chickens as a young boy.
Date: -
Name:Beth Crain. Email: <bcrain@indiana.edu>
Location:Bloomington, IN USA
Date of First Histo Occurence:1995
Affected Eyes:right
Other Stresses at Those Times:I have multiple health problems including lupus, low thyroid, diabetes, and others. I have been on cortisone many times.
Laser Surgeries:two. Results:Fair. I have a large blind spot and my vision is distorted due to scaring.
Sub Macular Surgeries:. Results:
Other Medical Treatment:Injection in the eye.
Nutritional Supplements:no
Vision Products Used:yes. kuzweil 3000.
Additional Comments:no
Date: -
Name:Don Blais. Email: <dblais@radicus.net>
Location:Sykesville, Maryland USA
Date of First Histo Occurence:1974
Affected Eyes:left only
Other Stresses at Those Times:About 3 mos. before condition developed had taken prednazone (a steroid) for treatment of (sounds like)parasysarisis. I personally speculate that this may have trigered the condition and would like comments on this.
Laser Surgeries:. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:no
Nutritional Supplements:no
Vision Products Used:
Additional Comments:As indicated above, I would like to know if anyone has found a possible connection between the steroid drug prednazone and the trigering effect on histo spots.
Date: -
Name:Carol Richardson. Email: <crich1941@aol.com>
Location:Kansas City, MO USA
Date of First Histo Occurence:November 1996
Affected Eyes:Left only
Other Stresses at Those Times:caring for ill husband and mother plus working part time.
Laser Surgeries:one. Results:no change
Sub Macular Surgeries:none. Results:
Other Medical Treatment:just checkups and dye in eye once.
Nutritional Supplements:strong vitamin
Vision Products Used:glasses for reading and sewing. vision is right eye is much weaker than 5 years ago.
Additional Comments:Had never heard of this disease until I was diagnosed. I grew up around lots of animals, chickens, birds in country.
Date: -
Name:ArthurD Peirce. Email: <dave@christos.cjb.net>
Location:San Marcos, Texas USA
Date of First Histo Occurence:Early 1980's
Affected Eyes:Both
Other Stresses at Those Times:None I know of. There were little areas of distortion in both eyes starting back in early 80's, but no problem until 2000 so undiagnosed until then
Laser Surgeries:One, 2000. Results:Sudden lesion in central vision area of left eye, repaired with laser, central vision destroyed.
Sub Macular Surgeries:None. Results:
Other Medical Treatment:None
Nutritional Supplements:No. Standard diabetic type 2 diet.
Vision Products Used:Reading glasses, but for far-sightedness not histo.
Additional Comments:Grew up on farm in Blue Ridge Mountains of Northern Virginia; lots of barns and sheds, cattle, horses, hogs, chickens, pigeons and other birds, some caves with bats, all kinds of wildlife. Boy heaven!
Date: -
Name:Evonne Burton. Email: <ejburton@fuse.net>
Location:Hamilton, Ohio USA
Date of First Histo Occurence:1996
Affected Eyes:both
Other Stresses at Those Times:My job was very stressful at the time. Not sure if that had anything to do
with it or not.
Laser Surgeries:2 in the left 0 in right. Results:First surgery in 1996. Had second surgery in
1998. So far so good. I go for my yearly exame
this Thursday. I don't notice the blind spot
to much any more.
Sub Macular Surgeries:. Results:
Other Medical Treatment:Just using my Amsler Grid daily
Nutritional Supplements:A multity vitamin
Vision Products Used:I have prescription glasses that I wear. I was wearing them before all of this starting happening.
Additional Comments:
Date: -
Name:Laura. Email: <laurakay76@juno.com>
Location:Lehigh Valley, PA USA
Date of First Histo Occurence:April 2000
Affected Eyes:right
Other Stresses at Those Times:nothing I'm aware of
Laser Surgeries:none. Results:my doctor said the laser surgery option was not a very good option for me, as it had a highly limited chance of success and a very good chance of ruining what vision I have left in my eye
Sub Macular Surgeries:none. Results:
Other Medical Treatment:none
Nutritional Supplements:
Vision Products Used:I've been using eyeglasses and contact lenses since I was six years old; that's the only vision aid I've ever used
Additional Comments:sorry I couldn't be of more help here =)
Date: -
Name:Tessie Tyrrell. Email: <tessie@mayberryamerica.net>
Location:Glendale, AZ USA
Date of First Histo Occurence:Unknown
Affected Eyes:Both
Other Stresses at Those Times:None
Laser Surgeries:1. Results:Too early to tell.
Sub Macular Surgeries:zero. Results:
Other Medical Treatment:
Nutritional Supplements:Daily vitamin
Vision Products Used:None
Additional Comments:I am now 39 but have had histo since I was a small child. I just started having problems with the blood vessels growing around the scar tissue in my right eye. I noticed spots and blurry vision about 3 weeks ago and have been to many doctors to find out what is wrong. I was born and raised in Minnesota and the Dr. said it is common in people who have lived along the Mississippi valley. I have worn glasses since I was 5 years old and am very nearsighted. I never had problems with my eyes until now. It is a scary thing to have happen and I thank God for the wonderful doctors in Minneapolis. I just had laser surgery yesterday and so far I do not notice any difference. I am to go back for a checkup in 3 weeks. I hope I never have to go through this again but the Dr. said it is possible it will come back. I am so happy to find other people with this.
Date: -
Name:yvonne elderman. Email: <y.elderman@hetnet.nl>
Location:doesburg, gelderland netherlands
Date of First Histo Occurence:sept 1995
Affected Eyes:1995 right2002 left
Other Stresses at Those Times:bump on the head?
Laser Surgeries:none. Results:operated in 1995
now perhaps laser
Sub Macular Surgeries:1. Results:
Other Medical Treatment:
Nutritional Supplements:
Vision Products Used:
Additional Comments:
Date: -
Name:yvonne
Location: USA
Date of First Histo Occurence:
Affected Eyes:
Other Stresses at Those Times:
Laser Surgeries:. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:
Nutritional Supplements:
Vision Products Used:
Additional Comments:
Date: -
Name:Valerie Prewitt. Email: <prewittv911@yahoo.com>
Location:Union City, Indiana USA
Date of First Histo Occurence:Oct 2001
Affected Eyes:
Other Stresses at Those Times:
Laser Surgeries:. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:
Nutritional Supplements:
Vision Products Used:
Additional Comments:I wanted to add that I had no health insurance at the time of diagnosis and I am now over 11,000.00 in debt. I could not get any financial help due to my child support put me over limit to qualify for charity care at the hospital I went to. If anyone has any information that could help me pay my bills, I would sure appreciate the info. I have since moved back to my home town and have gotten a job with insurance but my insurance now will not cover a pre existing condition for 280 days. That is another reason why I wont go to the doctor right now. I just cant go into any more debt. I cant afford it. I have emailed the national eye institute wanting them to know that I would participate in any kind of study they have on ocular histo. I havent heard anything back from them yet.
Date: -
Name:Valerie Prewitt. Email: <prewittv911@yahoo.com>
Location:Union City, Indiana USA
Date of First Histo Occurence:October 17,2001
Affected Eyes:left
Other Stresses at Those Times:I had just went through a divorce and moved my children and I 2 states away to West Virginia.
Laser Surgeries:one-PDT. Results:The leision I had was very close to my center vision so hot laser was not an option due to my surgeon thought it would cause more damage so they tried the new procedure using the cold laser. It shunk the lesion and flattened it out.
Sub Macular Surgeries:one. Results:regained 20/20 vision. Things still looked somewhat distorted but not as bad. They classified me as having 20/20 vision due to the fact that I could read the 20/20 line on the vision chart.
Other Medical Treatment:I had subsequent vitrectomy, gas bubble and membrane peel.
Nutritional Supplements:no
Vision Products Used:I use a pair of over the counter reading glasses. I was told by 3 different doctors that prescription glasses would not help me.
Additional Comments:I am 32 years old and have always had 20/20 vision. I have never worn glasses. This diagnosis hit me very hard and just out of the blue. I had never even heard of histoplasmosis. Just in the past week I had noticed a change in my vision again. I have 4 more histo spots in my affected left eye. I have one large histo spot in my right eye and several smaller spots. I no longer worry so much about my left eye. My concern now is my right eye. I am so terrified that the histo is going to active in my good eye. It is so frustrating when the doctors tell me there is nothing that can be done until the disease goes active and then we can just hope for the best. I have not made an appointment to go back to the doctor to check my left eye since my vision has changed. I am just so scared my doctor is going to tell me the rest of the spots in my affected eye have gone active. I dont know if I can take another surgery. I was so glad to find this web site. Someone else stated in here that no matter how much you explain it to people, they just have no idea how it feels to have this life altering disease unless they have lived it. Anyone on here please feel free to email me anytime. I would love to be able to correspond with others like myself. God bless all of you!
Date: -
Name:pAULA. Email: <p_williams61@hotmail.com>
Location:Hoopeston, Ill USA
Date of First Histo Occurence:april 2000
Affected Eyes:right
Other Stresses at Those Times:regular job related stress and a little extra family related stress
Laser Surgeries:. Results:
Sub Macular Surgeries:1. Results:did not work for me
Other Medical Treatment:none
Nutritional Supplements:daily vitimin
Vision Products Used:no
Additional Comments:I had the surgery because they told me I had a 50-50 chance of saving my sight but I losy all direct vision in that eye after the surgery
Date: -
Name:Mary Hamlin. Email: <pahofwa@aol.com>
Location:Shelton, WA USA
Date of First Histo Occurence:1976
Affected Eyes:left primarily
Other Stresses at Those Times:No abnormal stress can be determined. However it is very stressful thinking about how it will affect me from here on out.
Laser Surgeries:lazer 74 zaps 3/11/02. Results:too soon to know, however central vision of left eye will be reduced. The scar is close to right edge of the central vision area.
Sub Macular Surgeries:none. Results:none
Other Medical Treatment:none
Nutritional Supplements:multivitamins, vit. E
Vision Products Used:only glasses which I have worn since I was 10. I am now 62.
Additional Comments:My first incident was on midial peripheral area of left eye and no laser was needed. I did not have the DX of POH until 1999 by my son in law who is an opthalmologist and received his training in Iowa where he saw many cases. I have lived in Washingtion state since 1975 and Oklahoma Panhandle and Kansas prior to that.
Date: -
Name:Linda Ward. Email: <lmoward@pacbell.net>
Location:clayton, ca USA
Date of First Histo Occurence:1978
Affected Eyes:both
Other Stresses at Those Times:Normal stress of first pregnancy
Laser Surgeries:. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:none
Nutritional Supplements:no
Vision Products Used:bi-focals
Additional Comments:Do the rarity of this disease in CA at the time I had my initial problem, it took several months to figure out what was happening with my eyes. It was a very scary time for me, I certainly can feel for the people writing in with much more damage then what happened to me. At the start of my problem I was almost totally blind in one eye. The specialist felt that the surgery available at the time would do more harm than good. My vision became better after my daughter was born. Both eyes still have damage, but my vision is very good when both eyes are being used. It has been 23 years with no recoccurence. I still worry about my sight, glad to find this information on the web. I lived in Indiana when I was young - I imagine that i picked up the disease there.
Date: -
Name:Anne Johnson. Email: <abaxterjohnson@netscape.net>
Location:East Flat Rock, North Carolina USA
Date of First Histo Occurence:Diagnosed October 2001
Affected Eyes:rt. eye leaking, left eye with spots
Other Stresses at Those Times:job stress
depression/anxiety
Laser Surgeries:one. Results:Done as a follow up to a submac to seal off leaking
vessels. Doc says that the eye is looking good.
Sub Macular Surgeries:one. Results:some restoration of vision. Before the submac, couldn't
see the chart on the eye doctor's wall, let alone the big
E. Now, can see the chart, the big E, and the letters on the
row below. Have developed small cataract, but nothing
that the doctor even wants to treat at this point.
Other Medical Treatment:For histo, just 40 mg. prednisone at outset of diagnosis.
I thought I improved, but the doc said that it didn't work.
Nutritional Supplements:No.
Vision Products Used:Just reading glasses; the cheap kind you can get at Walmart. Occasionally a magnifying glass to read very small things.
Additional Comments:No.
Date: -
Name:shelly. Email: <shelly.messersmith@cbshome.com>
Location: nebr USA
Date of First Histo Occurence:10/91
Affected Eyes:both
Other Stresses at Those Times:my son was 7 mo's old at time of diagnosis....maybe pregnancy....
i've been told pregnancy aggrevates condition....
Laser Surgeries:2. Results:lost all but some peripheral vision in lft
eye....lost vision to lft of center in rt..
Sub Macular Surgeries:. Results:
Other Medical Treatment:
Nutritional Supplements:no
Vision Products Used:eye-glasses,,,,need something now not sure what....
Additional Comments:i am 33 and have recently noted a big decrease in rt. eye vision... doc..doesn't see it angio. doesn't show anything he said...but i see fluid around scar on pics from angio...i go back tomorrow for re-check i notice my blind spot in good eye has gotten darker and larger... it is difficult to drive i have to really concentrate and focus.... i fear giving up driving and relying on someone...recently fell down steps and broke hand i blame that on my shoes and carpet,,,but think it has more to do with depth perception....
Date: -
Name:Jane. Email: <jane_wilson76@yahoo.com>
Location:Williamsport, Indiana USA
Date of First Histo Occurence:2001
Affected Eyes:2002
Other Stresses at Those Times:depression, fatigue
Laser Surgeries:. Results:
Sub Macular Surgeries:. Results:have surgery tomorrow, so results unknown at this time
Other Medical Treatment:
Nutritional Supplements:potassium
Vision Products Used:glasses
Additional Comments:
Date: -
Name:Lisa. Email: <prinkayla@hotmail.com>
Location:Fort Wayne, IN USA
Date of First Histo Occurence:8/2000
Affected Eyes:Both
Other Stresses at Those Times:I was an accountant. Gearing up for tax season.
Laser Surgeries:4. Results:First was a hot lazer, lost all vision in Right eye. Rest were PDT or Visudyne, First 2 I lost more vision in Left eye, I changed Doctors and the 4th PDT was without problems. So Far.
Sub Macular Surgeries:. Results:
Other Medical Treatment:No, but for all who have PDT done, I was one who had very bad headaches. Eat Salty foods(potato chips) before and after surgery. It really helps.
Nutritional Supplements:Just vitimans.
Vision Products Used:Yes, CCTV, magnifyers, Windo Eyes and anything that will help.
Additional Comments:
Date: -
Name:Stacey. Email: <chaddywhacks@hotmail.com>
Location:Tompkinsville, Kentucky USA
Date of First Histo Occurence:2001
Affected Eyes:Disseminated Histo(Lungs)
Other Stresses at Those Times:Constant joint and muscle pains,pleuricy,extreme weakness
Laser Surgeries:XXXXXXXXX. Results:
Sub Macular Surgeries:XXXXXXXX. Results:
Other Medical Treatment:I have had A lung biopsy,Thoracotomy,had part of my lung removed,been put on a breathing machine,had amphotericen B treatments
Nutritional Supplements:Potassium
Vision Products Used:XXXXXXXX
Additional Comments:I am overwhelmed by the number of entries here,and even more by the number of entries from Kentucky.When I was diagnosed with Histo I was told that it was very rare.By the time I was diagnosed the Histo was Killing me.For almost A year I kept going to doctors and emergency rooms with strange reoccuring symtoms.Severe muscle pain,A swollen gland in my neck that would come back every couple weeks,stabbing pains in my chest and back at night,and various other symtoms.I was told I had Arthritis,Pleuricy,Depression,etc.,etc. They would see I have no insurance,give me A shot or another pricey prescription that I couldnt afford and never worked and send me home.I had to quit working because I could barely lift my arms and felt like I was going to pass out all the time.On bad days I would need help dressing myself.My husband became very cold about it.He was tired of hearing about my roaming pains and thought I just didnt want to work anymore.He would tell me what a waste of time it was when I wanted to go see another doctor.He'd say"they are going to tell you what all the others did,there's nothing wrong with you" So I started staying in bed and keeping my discomfort to myself.Finally after A year of this torture I came down with a fever,went to the hospital where they said I had Pneumonia.(Still not listening about my joint pain) After A week of antibiotics I got worse and started having trouble breathing.They sent me to another hospital where they finally,after tring every other painful procedure,cut me open,separated my ribs,and scraped my lungs,removed a piece of my lung,and found out I had histo.A few days later I had to be put on a breathing macine.They had to induce a coma.Supposedly I was in the last stages of the Histo and it was killing me.It had spread through my body.I finally pulled the breathing tube out myself,luckily I didnt pull my vocal chords out with it,and started recovering from there.I had to get weeks of physical therapy to walk because I had been in bed so long,Ihad to be weaned off oxygen,and when I finally did get to come home I had 5 hour Amphotericin B treatments every day at the hospital for 3 weeks.My lungs are better,but I still have joint pain all over.They tell me it will take 8 months to a year to recover.It has been the scariest,most frustrating thing I've ever gone through.Has anyone else almost died,or had the muscle/joint pain associated with this disease?Im at the end of my rope.please help.Thanks and God bless you all.
Date: -
Name:Donna. Email: <Damonzone@aol.com>
Location:Crescent Springs, KY USA
Date of First Histo Occurence:11/99
Affected Eyes:Both
Other Stresses at Those Times:Just normal stress from being a stay at home mother of 2 small children.
Laser Surgeries:Third one this Monday 2/4/02. Results:I am going in for my 3rd PDT treatment this monday. I had my first PDT in July of 2000, shortly after it was approved for use on Histo patients. It was very successful for about a year...my vision seemed to get better after 1st treatment. Shortly after September 11, I noticed my right eye becoming distorted again. In October I had a second PDT. Initially it got better, but around December it started regressing again. Hopefully this next one will help.
Sub Macular Surgeries:. Results:
Other Medical Treatment:
Nutritional Supplements:Every vitamin the health food store recommended. I take 1000mm of C, 1000mm of E, An anti-oxidant, along with a regular multi-vitamin.
Vision Products Used:Glasses and Contacts
Additional Comments:I was 36 when this started. I was driving down our road at night and all of a sudden noticed a black spot in my right eye. I went right away to a retinal surgeon. I have histo-spots in both eyes, but it is only affecting my right eye in the center of my vision at this time. The doctor said that currently I am experiencing a lot of swelling which seems to cause more blurriness rather than distortion. In the past I had a cortisone shot in the eye (quite gross), but I guess that is not an option at this point. This is a very frustrating disease. I have read alot of the other entries and must admit that when it first happened to me I was very scared and afraid. I guess now I am at the point that this is in God's hands. I am doing everything I can, just taking one day at a time. I think that worrying and stressing over it just makes it worse. I have asked (sometimes begged) God to please just let me see my childrens faces as they grow. Hopefully he will hear and answer my prayer. God Bless you all, lets pray for a cure!!
Date: -
Name:KIM
Location:NICH, KY USA
Date of First Histo Occurence:2/1/01
Affected Eyes:
Other Stresses at Those Times:
Laser Surgeries:. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:
Nutritional Supplements:
Vision Products Used:
Additional Comments:
Date: -
Name:Ruth Wales. Email: <Ruth.Wales@camden.gov.uk>
Location:London, UK
Date of First Histo Occurence:1998-2002
Affected Eyes:both
Other Stresses at Those Times:Not especially - however, my weak eyes are affected by Chlorine in swim pools, household cleaning and DIY products, smoking and chemical intake.
Laser Surgeries:. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:Steroids, licorice. recurred so stopped both.
Nutritional Supplements:'Eye vites' - E and A. They work in general!
Vision Products Used:Just glasses and contacts, around 9 dioptres.
Additional Comments:Worn glasses since 4 years old, haven't got histo, have holes in the inner choroid layer and associated vision problems. The main blind spots are of course in the middle of the eye, right where I am trying to see stuff. Sucks. However, is now 4 years on, and the left eye is nearly recovered. Its not really supposed to. The right eye is now going through its blind spot plus and associated peripheral vision problem, and I fully expect that to recover in 4 years too. I tried steroids and swore never again, and also licorice, which worked but it returned. Factors in macular degeneration in general would seem to be virus linked, immune system linked, bio unfriendly chemicals linked. Strongly chorinated swimming baths are the worst I am sure.
Date: -
Name:Jodi. Email: <msjodi@webtv.net>
Location:Collierville, Tennessee USA
Date of First Histo Occurence:1955
Affected Eyes:both
Other Stresses at Those Times:
Laser Surgeries:. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:
Nutritional Supplements:yes...Estrovan with vitamins
Vision Products Used:Yes, magnification devices (hand-held); computer enchancement
Additional Comments:I have amblyopia in both eyes which is a detriment to my vision
Date: -
Name:Rowena. Email: <spangly_row@hotmail.com>
Location:Malmesbury, Wiltshire England
Date of First Histo Occurence:End of September 2000
Affected Eyes:Right Eye
Other Stresses at Those Times:Glandular Fever a year before that
Laser Surgeries:None. Results:
Sub Macular Surgeries:One. Results:A very small increase in my central vision.
Other Medical Treatment:No other medical treatment.
Nutritional Supplements:No.
Vision Products Used:
Additional Comments:I have had several, seemingly unrelated, allergies appear since I developed POHS, when I had none before.
Date: -
Name:Stacy. Email: <shaydel@lausafcu.org>
Location:Gonzales, LA USA
Date of First Histo Occurence:June/July 1999
Affected Eyes:Left
Other Stresses at Those Times:Was getting married, wasn't really stressed.
Laser Surgeries:2. Results:Basically to stop the bleeding from the spots. The first laser surgery stopped the bleeding, but it was in my best interest to have the Sub Macular surgery. The last laser surgery was done on Dec. 27, 2001. Last visit said it looked good. But to me nothing looks good if there is gray areas on my angiograms.
Sub Macular Surgeries:1. Results:Histo spot was removed and a little of my vision was restored, but it will never be 20/20 again. I may be having my second surgery soon. I have another appointment on Jan. 24, 2001. I would rather remove them as soon as they start, rather than wait. I feel the sooner taken out, the least amount of damage they can do to the eye. I could be wrong, but they really frustrate me!!
Other Medical Treatment:
Nutritional Supplements:Nothing other than vitamins. Recommended to take Advil twice a day to reduce swelling.
Vision Products Used:No.
Additional Comments:Anyone experiencing the same symtoms and are having trouble dealing with them please e-mail me. I am 28 yrs old and having a hard time with this. I just feel like this should not be happening to me and really want it to stop. The first time this came up in 99 I did not understand. About 3mnths ago I notices another spot. Called my specialist (Dr. Breaud w/ VRI) and went see him sadly I have a lot more spots. I only have 2 spots that are going to the center of my vision. There are about 6-8 smaller spots around the eye. I sadly just imagine the worst and hope for the best. Good luck to everyone dealing with this and best wishes that new technology will help us all!!! At least there is good info on these internet site for Ocular Histoplasmosis.
Date: -
Name:ellen kenter. Email: <ekenter@dds.nl>
Location:hoorn, Noord-holland The Netherlands
Date of First Histo Occurence:nov 2000
Affected Eyes:right eye
Other Stresses at Those Times:I had trouble sleeping.
Laser Surgeries:. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:no
Nutritional Supplements:no
Vision Products Used:no
Additional Comments:I try to keep myself as healthy as possible by eating healthy ans exercising. I am starting a internet-site for people in holland with POHS: huizen.dds.nl/~ekenter/pohs if you are Dutch and have pohs, please contact me ekenter@dds.nl
Date: -
Name:Al. Email: <alfoizuddin@hotmail.com>
Location:London, Greater London UK
Date of First Histo Occurence:February 1997
Affected Eyes:Both
Other Stresses at Those Times:
Laser Surgeries:non. Results:
Sub Macular Surgeries:non. Results:
Other Medical Treatment:
Nutritional Supplements:used to take bluberry and bright eye supplement and acquired a taste for spinach
Vision Products Used:no
Additional Comments:I am 25 years old. My retinal condition is not properly diagnosed yet, but having read other peoples stories I think my condition is similar to histo. At the age of 20,after five month of living in university halls, sharing a room with another student, I noticed a slight peripheral blind spot in my right eye. I decided to visit my optician who told me she couldnt see anything unusual except a minor scar on my right retina. She referred me to my doctor. First specilist told me that there was nothing wrong and the blind spot was related to my short sightedness. Gradually my eye sight got worse, central vision got blurry and I saw straight lines bent; the doctor noticed an inflammation and reffered me to London Morefield Eye Hospital. I was told I have chorioretinal scars in both eyes, that the eyes are stable and have healed up. They couldnt arrive at a diagnosis because the scarring is very unusual. They said its similar to 'serpaginous', and also a hereditary disease EDS (Ehler Danloss Syndrome) as I have a lot of stretch marks and have supple joints. However There isnt a family history. Currently my left eye is completely functional, though it has a peripheral blindspot; my right eye has a peripheral blindspot like the left eye and also very bad central vision so that I cant read, or recognise faces with just the right eye. My sight has been stable for the last two years or so. Though this condition doesnt stop me from doing anything, it has had a terrible psychological toll on me. Unlike most other people, I never consciously felt a sense of alarm, fear or anything else I am supposed to feel. I dont discuss it with anyone, though a couple of people know including my mum. I know that if my left eye deteriorates to the level of my right eye I wouldnt be able to read at all and would struggle writing or typing. I think I have put a lot of things on hold, and I have been waiting for the last 4 years to see what happens to my remaing vision. I easily fall into a state of depression, and feel demotivated.
Date: -
Name:Kit. Email: <kits@txucom.net>
Location: TX USA
Date of First Histo Occurence:1952/1981 first eye problem
Affected Eyes:Both
Other Stresses at Those Times:Hypo-thyroidism probably at time of original pulmonary and eye infection. Going thru divorce at time of first eye problem. In a time of general life stress at time of 2nd eye problem. Everything OK at time of 3rd eye problem - except that it occurred to me after it develpoed that I had been lofting a lot of boxes of books. I wonder if the strain caused the leakage. How dumb of me. Though I have had this disease for many years, I have not been told much of anything about it and am just now beginning to learn via the internet.
Laser Surgeries:2. Results:1st one, with standard laser; recovered 20/20 vision in that eye. 2nd one with TTT only three weeks ago; have recovered one line (to 20/40) and good general improvement.
Sub Macular Surgeries:None. Results:
Other Medical Treatment:For hypo-thyroidism, began at about age 33.
Nutritional Supplements:Not for a while but am getting back into them.
Vision Products Used:Occasionally a magnifying glass to read standard small print.
Additional Comments:Without planning to, I posted my story in response to another post somewhere in a topic list here! The pulmonary hist list, I THINK! Or maybe occular. I am new to the site today and am just now learning the ropes!
Date: -
Name:Marla
Location:Mansfield, Tx USA
Date of First Histo Occurence:Nov 1999
Affected Eyes:right
Other Stresses at Those Times:Right before taking trial of steroids, found I was type 2 diabetic.
Laser Surgeries:1-Dec 2001. Results:Pictures show some leakage, but will wait another 6 wks to check. Will see what happens then.
Sub Macular Surgeries:1. Results:Membrane was removed, but lost my central vision due to extensive scar tissue.
Other Medical Treatment:none
Nutritional Supplements:nothing more than a multi vitamin.
Vision Products Used:Just my regular glasses (bi-focals) that I have have worn for about 15 yrs.
Additional Comments:This is really scary for me. The thought of this spreading to my good eye, and the possibility of losing my sight completely, scares me to death. I try not to think that far ahead, but after reading what everyone has written I really don't see a whole of rejoicing in the future, but my family and I will just have to ride it out and hope for the best. It really does help to know that others have the same problems and that none of us are alone.
Date: -
Name:Marla
Location:Mansfield, Tx USA
Date of First Histo Occurence:Nov 1999
Affected Eyes:right
Other Stresses at Those Times:Right before taking trial of steroids, found I was type 2 diabetic.
Laser Surgeries:1-Dec 2001. Results:Pictures show some leakage, but will wait another 6 wks to check. Will see what happens then.
Sub Macular Surgeries:1. Results:Membrane was removed, but lost my central vision due to extensive scar tissue.
Other Medical Treatment:none
Nutritional Supplements:nothing more than a multi vitamin.
Vision Products Used:Just my regular glasses (bi-focals) that I have have worn for about 15 yrs.
Additional Comments:This is really scary for me. The thought of this spreading to my good eye, and the possibility of losing my sight completely, scares me to death. I try not to think that far ahead, but after reading what everyone has written I really don't see a whole of rejoicing in the future, but my family and I will just have to ride it out and hope for the best. It really does help to know that others have the same problems and that none of us are alone.
Date: -
Name:Marla
Location:Mansfield, USA
Date of First Histo Occurence:
Affected Eyes:
Other Stresses at Those Times:
Laser Surgeries:. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:
Nutritional Supplements:
Vision Products Used:
Additional Comments:
Date: -
Name:Susan Waggoner. Email: <mwaggoner@mmcable.com>
Location:DelCity, OK USA
Date of First Histo Occurence:July, 1998
Affected Eyes:Right
Other Stresses at Those Times:None
Laser Surgeries:None. Results:
Sub Macular Surgeries:None. Results:
Other Medical Treatment:
Nutritional Supplements:No
Vision Products Used:No
Additional Comments:Woke up on my 1st wedding anniversary with a blind spot in my center of vision. Went to my eye doctor and he sent me to a retinal specialist. He then said I had Viral Retinitis and sent me to have a Physical with a regular MD. Which revealed nothing but that I was in good general health. I dismissed everything and went about my way. Then I went to have my eyes checked again Dec 31, 01 and my eye doctor sent me again to the retinal specialist and he said that I had Histoplamosis and that it had scarred and is no longer bleeding. I will be going to my eye doctor every six months now because he said that I have changes that he wants to watch. I don't use my right eye because I cant read anything with the black spot in my center of vision. My peripheral vision is still okay but it is very dark and blurry. I was born in Pekin, Illinois left there when I was 19 and moved to California for 15 years and then moved to Albuquerque NM for 11 months and then moved to Oklahoma City and have been here for 4 years. I probably contracted this in Illinois. I have not noticed any ill health. Besides a cold now and then. I had pleurisy and bronchitis in Calif. So I can only guess as we all do. I am shocked that at my age I just wake up in the morning and I have limited sight in my right eye! Thank God there is no evidence of it in my left eye. I work a full time job and drive as though there is nothing wrong and I am thankful that after reading some of the experiences that I have no other problems with my vision. I wish you all good luck with your vision. After losing half of mine I am thankful for what I have left and plan to take action if I have any more problems with this disease. I still have trouble believing it happened to me! Good Luck to you all.
Date: -
Name:Pam Miller. Email: <nomad@sockets.net>
Location:Jefferson City, Missouri USA
Date of First Histo Occurence:September, 2000
Affected Eyes:no, just some "spots"
Other Stresses at Those Times:New job. I believe I had undiagnosed lung histoplasmosis that was never treated, although I went to the doctor many times. I got "the flu" and then had chest pain that was very hard to define. Numerous tests were performed, looking for heart, lung, or gall bladder problems but nothing was found. I had trouble breathing and generally felt terrible. X-rays didn't show anything, but I had them early on, maybe something would show now. The pain didn't go awau until I started taking MSM (2,000 mg/day, Sams Club is the cheapest source for it.) It didn't click that I'd had histo until the spots were found in my eyes that hadn't been there on my previous eye exam.
The pain in the chest moved around, but it was a generalized aching and a sensation of a heavy weight on my chest. I could hardly get around.
Laser Surgeries:. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:
Nutritional Supplements:
Vision Products Used:My vision wasn't affected because the spots were in the outside part of the retina.
Additional Comments:I believe I got it from excavating a hole to repair a leak in my basement and also pulling the drywall off the inside of the basement wall. There was a great deal of dust and mold involved. I understand histo can live in soil.
Date: -
Name:Anne Johnson. Email: <janne@mindspring.com>
Location:East Flat Rock, North Carolina USA
Date of First Histo Occurence:Summer 01
Affected Eyes:Right mostly; histo spots in left too
Other Stresses at Those Times:Depression. Job related stress.
Laser Surgeries:. Results:
Sub Macular Surgeries:I'm getting ready to have one the 27th of November. Results:
Other Medical Treatment:Prednisone 40mg.
NO significant improvement in the
right eye.
Nutritional Supplements:No.
Vision Products Used:reading glasses help magnify things large print books
Additional Comments:The thought of submacular surgery The thought of submacular surgery The thought of submacular surgery I'm scared of the surgery!
Date: -
Name:Jean Kraus. Email: <Jean9117@aol.com>
Location:Cincinnati, Ohio/USA USA
Date of First Histo Occurence:12/17/1999
Affected Eyes:Both scarred/right bad large spot in the fovea.
Other Stresses at Those Times:High blood pressure for 37 years, kidney's gave up when I had child #3 in 33 months and I have been taking Prinvil/Zestril for this for the last ten years. Lots of stress. Divorced and the holidays have never been a good time for me, even when I was married and had small kids. Have had pyschiatric help, counselling etc. but a couple of good quotes describe me best; one from my regular doctor"if you didn't have something to worry about you would worry about why you weren't worrying"; one of the shrinks " if you were half as important as you think you are you should be running a small county" Uptight kind of person.
Laser Surgeries:2. Results:Thumb size scar in right eye, fairly good vision until cateract surgery in left eye in
November, 2000. Foggy vision and a new vessel along side the first one. 2nd surgery 9/12/01 the pictures look great, good scarring no leakage but still foggy vision. Better in low light.
Sub Macular Surgeries:????. Results:
Other Medical Treatment:Two cataract surgeries, left eye March 1999, right eye November, 2000. Temporary Lachrimal plugs March of 2001 (4) then permanent in April 2001 (2). Very dry eyes. Scratched cornea in non affected eye after 1st surgery from just opening my eyes.
Nutritional Supplements:No
Vision Products Used:Changing fonts on my computer, but only to 12 point. I do accounting work so my eyes are under severe strain at times. Old lady nearsigted? (can't see close up) Walgreens special glasses. Still driving abeit less and not at night. Still able to work (thank God for that) No vision problems at all until age 44.
Additional Comments:64 Year old white female, divorced, three grown, married kids. Very independent and this disease is wreaking havoc with my perceptions of where I want to go from here and how I am going to manage to get there without becoming someone's "dependent" (thats a word that strikes fear into my soul! The blink site looks as though it might be just what I am looking for. Please feel free to e-mail me just to talk even after reading some of the case histories I am beginning to think I am dealing better than I thought. My heart aches for the many very young people here. I was lucky (never thought I would be saying that1) I ad so very many good vision years. You just don't appreciate what you have until it is gone or going.
Date: -
Name:Jean Kraus. Email: <Jean9117@aol.com>
Location:Cincinnati, Ohio/USA USA
Date of First Histo Occurence:12/17/1999
Affected Eyes:Both scarred/right bad large spot in the fovea.
Other Stresses at Those Times:High blood pressure for 37 years, kidney's gave up when I had child #3 in 33 months and I have been taking Prinvil/Zestril for this for the last ten years. Lots of stress. Divorced and the holidays have never been a good time for me, even when I was married and had small kids. Have had pyschiatric help, counselling etc. but a couple of good quotes describe me best; one from my regular doctor"if you didn't have something to worry about you would worry about why you weren't worrying"; one of the shrinks " if you were half as important as you think you are you should be running a small county" Uptight kind of person.
Laser Surgeries:2. Results:Thumb size scar in right eye, fairly good vision until cateract surgery in left eye in
November, 2000. Foggy vision and a new vessel along side the first one. 2nd surgery 9/12/01 the pictures look great, good scarring no leakage but still foggy vision. Better in low light.
Sub Macular Surgeries:????. Results:
Other Medical Treatment:Two cataract surgeries, left eye March 1999, right eye November, 2000. Temporary Lachrimal plugs March of 2001 (4) then permanent in April 2001 (2). Very dry eyes. Scratched cornea in non affected eye after 1st surgery from just opening my eyes.
Nutritional Supplements:No
Vision Products Used:Changing fonts on my computer, but only to 12 point. I do accounting work so my eyes are under severe strain at times.
Additional Comments:64 Year old white female, divorced, three grown, married kids. Very independent and this disease is wreaking havoc with my perceptions of where I want to go from here and how I am going to manage to get there without becoming someone's "dependent" (thats a word that strikes fear into my soul! The blink sitelooks as though it might be just what I am looking for.
Date: -
Name:Laura Crase. Email: <mcrase1@midsouth.rr.com>
Location:Bartlett, TN USA
Date of First Histo Occurence:September , 1999
Affected Eyes:left, 1999; right, 2001
Other Stresses at Those Times:started to experience TIA (temporary strokes) during the time POHS was diagnosed
Laser Surgeries:1. Results:hot laser - could not stop leaking near center vision and lost central vision in left eye 4 months later.
Sub Macular Surgeries:. Results:
Other Medical Treatment:
Nutritional Supplements:
Vision Products Used:
Additional Comments:
Date: -
Name:Sherri. Email: <Jettswife@aol.com>
Location:Wills Point, Texas USA
Date of First Histo Occurence:
Affected Eyes:Both
Other Stresses at Those Times:Just the usual stress of every day life
Laser Surgeries:none. Results:
Sub Macular Surgeries:none. Results:
Other Medical Treatment:none
Nutritional Supplements:Vitamins
Vision Products Used:I currently wear glasses and have gotten a new prescription with bifocals. Since my last eye exam 2 years prior, my eyesight has changed significantly.
Additional Comments:What I don't understand is according to everything I have read about this disease, it affects people who live in the Mississippi & Ohio River valleys. I have never lived there. Then there's the thing about birds. I just want to know is there any other way A person can get this disease or are these the only 2 ways. When I was young, I spent 2 weeks every summer in Iowa (4 years in a row) that's the ONLY place I can think of that I contracted this disease. Does anybody know how long it takes to catch it?
Date: -
Name:Gail. Email: <gam500@aol.com>
Location:Scottsdale, AZ USA
Date of First Histo Occurence:10/92
Affected Eyes:both lungs and liver
Other Stresses at Those Times:At the time I was diagnosed, I was attending college in Cincinnati, Ohio...I had various types of stresses including; school, job, parents recently divorced, and obesity...today, like everyone else, I have many many stresses varing from day to day.
Laser Surgeries:. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:various surgeries and biopsies...I was also put on a couple different steroids and had also developed asthma and chronic bronchitis so treatments have varied.
Nutritional Supplements:I currently take B-Supplements and a multi-vitamin.
Vision Products Used:
Additional Comments:My symtoms are subdued for now...however, I am more prone to having bronchitis and other types of similiar cough and flu like illnesses. When I lived in Cincinnati, my doctor (who I highly recommend) was Dr. Robert Baughman...out of the University of Cincinnati Medical Center...he was a specialist...I would be interested in hearing from anyone regarding this especially those who had histo on the lungs first and then it progressed to the eyes....within the past year I have had to use glasses, but I was tested and it did not show up in my eyes at this time.
Date: -
Name:sue haptonstahl. Email: <susiehap@aol.com>
Location:Springfield, IL USA
Date of First Histo Occurence:2/01
Affected Eyes:left
Other Stresses at Those Times:I was hit by a student 2 weeks prior to first laser surgery. I immediately noticed distorted vision, but thought it was glasses being bent and had them adjusted twice before I realized there was a blind spot. Had laser surgery the day it was diagnosed and was free from leaking until august this year. had laser againn and now in October, am needing PDT to save central vision in left eye. As a teacher, I know stress! Also, my mother is having surgery for colon cancer which was diagnosed in August.
Laser Surgeries:3. Results:trouble free for 6 months, now have 3rd leak from same scar going into ceentral vision in left eye
Sub Macular Surgeries:. Results:
Other Medical Treatment:saw Dr. Matt Thomas in St. Louis for second opinion after 1st surgery. Seemed to be in agreement with first doctor.
Nutritional Supplements:
Vision Products Used:
Additional Comments:
Date: -
Name:Sally L Palmer. Email: <Sallyslpalmer@aol.com>
Location:North Vernon, In USA
Date of First Histo Occurence:1978
Affected Eyes:left and then right
Other Stresses at Those Times:no stress other than working and raising my family
Laser Surgeries:10. Results:one laser in left eye i have no central vision in that eye. i have had nine lasers in my right eye.
Sub Macular Surgeries:none. Results:
Other Medical Treatment:i was on predisone for several years. i also had two predisone shots in my left eye with no results.
Nutritional Supplements:no
Vision Products Used:right now i'm using magnifying glasses with a flashlight.
Additional Comments:i have not been able to work since April, 2001 or have not been able to drive. i would like to be able to see better so i could read and see my computer better. i guess my next step is to have the submacular surgery.
Date: -
Name:Jill. Email: <ocrush@nc.rr.com>
Location:Raleigh, North Carolina USA
Date of First Histo Occurence:October 1978
Affected Eyes:Left eye
Other Stresses at Those Times:Other than serving in the Air Force stationed in Naples, Italy, I really didn't find myself under any unusual stress.
Laser Surgeries:. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:Steriods prescribed (about 18 months later) initially high dosage decreasing dosage over 4 months.
Nutritional Supplements:Nothing other than daily vitamin supplements.
Vision Products Used:No.
Additional Comments:Born in Buffalo; however, moved to Florida in late 1969. Few later I visited several times to the Mississippi River. Diagnosed in 1978; however the doctor's in Naples, Italy and Wiesbaden, Germany didn't do anything for me (was stationed in Naples Italy from 1977-1980). Once back to the U.S., I was a patient at Wilford Hall at Lackland AFB where I came upon a brillant opthamologist (Dr. Jack Sipperly) and a great staff of young and upcoming opthamologists. Was seen by the staff at Wilford Hall from 1980 - 1985. A volunteer "test" case patient, I hope that my numerous flurosein procedures & photo's and well as documented case helped with medical research, technology, and in the general education of eye professionals. Although I was initially given dosages of prednisone, not much else was available to me for regained eyesight. My faith and prayers to God sustantained me along with fierce determination through positve affirmations that I would regain my sight (partial only, but that's better than none) and I know I had the best eye care professionals on my side. Today I have the onset of cataracts and additionally suffer from macular degeneration, but I'm still determined to succeed in my quest for quality of life through better vision. God's blessings to all!
Date: -
Name:Jill. Email: <ocrush@nc.rr.com>
Location:Raleigh, North Carolina USA
Date of First Histo Occurence:October 1978
Affected Eyes:Left eye
Other Stresses at Those Times:Other than serving in the Air Force stationed in Naples, Italy, I really didn't find myself under any unusual stress.
Laser Surgeries:. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:Steriods prescribed (about 18 months later) initially high dosage decreasing dosage over 4 months.
Nutritional Supplements:Nothing other than daily vitamin supplements.
Vision Products Used:No.
Additional Comments:Born in Buffalo; however, visited several times to the Mississippi River.
Date: -
Name:SARA. Email: <SADDENT@HOTMAIL.COM>
Location:BEVIER, MO USA
Date of First Histo Occurence:diagnoses 9/4/2001
Affected Eyes:right eye
Other Stresses at Those Times:no, just the normal everyday things. taking care of home and family.
Laser Surgeries:. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:have a watering/drainage comming from right eye, dont no if it is associated with histo or not. dr. did not ansew my ??'s. put me on zaditor drops
Nutritional Supplements:started taking centrum vitamins yesterday after reading posts, from others with histo
Vision Products Used:just have my glasses. have had glasses since 3rd grade.
Additional Comments:i am really confused about this diagnosis. the specilist did not say if there is treatment for this, or what will happen now and later, did not answere my ??s and i am totally dumb and very lost on this diagnosis. i dont no what will happen to my eyes or any thing. if any one could give me some type of information, any at all, on this pohs, it would really be apprecieated. you can email me at saddent@hotmail.com. would like to chat with someone or email with someone that has the same diagnoses as i do. i really need some insight on this. have records from my eyes clear back til i was 13 and have had to have glasses almost everyyear since i was in third grade. last year opt. toldme my eyes were 20/400 this year he is telling me they are 20/1200. so please if any one can help me or inform me on this histo thing i would greatly appreciate it. i am only 29 and my greatest fear is going blind and not seeing my 9 yr old daughter grow up.
Date: -
Name:CHRISTINE. Email: <MIDNIGHT10@MSN.COM>
Location:CLEVELAND, OHIO USA
Date of First Histo Occurence:8/2001
Affected Eyes:LEFT;SPOTS IN BOTH
Other Stresses at Those Times:VERY STRESSED OUT AND DEPRESSED BERFORE THE PROBLEM STARTED
Laser Surgeries:1. Results:ONLY BEEN 2 WEEKS SO FAR BLEEDING HAS STOPPED. BUT VISION IS STILL DISTORTED AND I HAVE A BLIND SPOT
Sub Macular Surgeries:. Results:
Other Medical Treatment:NONE SO FAR
Nutritional Supplements:STARTED TAKING EYE VITIAMS
Vision Products Used:NO
Additional Comments:THIS IS A VERY TERRIFING THING. I HAVE ALWAYS HAD PERFECT VISION AND THEN ONE DAY I WOKE UP AND MY EYES SEEMED A LITTLE BLURRY. I THOUGHT I NEEDED GLASSES. AND A COUPLE OF DAYS LATER I NOTICED THAT THE VISION IN MY LEFT EYE WAS DISTORTED. WENT TO THE DOCTOR AND HE TOLD ME I HAVE OCCULAR HISTOPLASMOSIS. THERE WAS BLEEDING IN MY LEFT EYE NEAR THE CENTER AND HE DIDNT NO IF HE COULD STOP IT. HAD LASER SURGERY. HAVE ANOTHER SPOT IN MY LEFT EYE AND ONE IN MY RIGHT EYE. DOCTOR SAID THAT HE CANT DO ANYTHING ABOUT THEM UNLESS THEY START BLEEDING. ANYONE FEELING ALONE PLEASE FEEL FREE TO WRITE ME. THIS IS REALLY SCARY AND I KNOW I NEED PEOPLE TO TALK TO THAT UNDERSTAND WHAT I AM GOING THROUGH.
Date: -
Name:peggy. Email: <peggy_west_2000@yahoo.com>
Location:buffalo, USA
Date of First Histo Occurence:3/99
Affected Eyes:left
Other Stresses at Those Times:had JUST quit smoking 4 days prior; taking zyban, which i noted someone else at this site mentioned... coincidence?
Laser Surgeries:1. Results:was follow up to 2 other surgeries. did stop the regrowth of the membrane.
Sub Macular Surgeries:1. Results:membrane was successfully removed. unfortunately, the bleeding/scarring had done enough damage that i had lost rpe.
Other Medical Treatment:physician who performed submacular surgery to remove membrane also performed a retinal shift. As i had lost the healthy tissue in the exact center of vision, dr. recommended shifting the retina so that macula would lie over an area of healthy tissue rather than the damaged area. also successful. required a scleral buckle during this operation due to some tearing in weak areas of retina. this was done 1st week of 4/99 (1 week after membrane removed). laser surgery required in 7/99 as regrowth occurring. did not decrease central vision because macula now in different place. cataract surgery in 8/99 due to trauma of 2 surgeries within a week and necessary post-op gas bubbles. also have had depomedral SP? injections in both eyes for subretinal inflammation; 3x on prednisone ; i beg for the injections if at all possible: a day or 2 of discomfort is much more tolerable than the psycho days on prednisone.
Nutritional Supplements:no. try to eat lots of dark green for lutien, don't want to have to deal with a different problem a few years down the road. was 29 when this hit me.
Vision Products Used:thankfully, none necessary. after 3 surgeries, laser treat, and a few bells and whistles in prescrip.(worn glasses for near-sightedness since 13) i can now see 90% of 20/20 line on chart. with a slight turn to the right i can see what remains.
Additional Comments:i'm amazed at the number of entries here! i've probably strained my eyes, reading so many. i praise those who are making it through this. i also praise each and every physician who has helped me get to where i am now. drs. hanni, the optom. i see for eyeglasses, who i first went to with "something just isn't right, things that should be straight are bent", on to dr schraut who recommended if travel was not an issue, to see a dr. mathew thomas,barnes retina institute, st. louis (some 300 miles from my home.) though complications and recurrences required many more trips to his office than i had imagined(I'll be paying credit card bills for hotels, gas, medical expenses) for years, i'm sure, but i'm very glad i chose the route i did. though not perfect, i think my sight is as close as you can get considering. i have worked a full-time and part-time job for the past year and a half to keep up with it all. my joke is who needs home ownership or a sports car, i have the most expensive eye in the world. what never goes away is the f word--you all know it-- FEAR. i have inactive spots in my rt eye also. will i wake up to a bent world again? will i grow another membrane under the place my macula is now in my left eye? will i ever work just one job again and not know what to do with FREE TIME???? i much admire those who have gone through this who are also raising children, my biggest worry was where to kennel my dog for the few days i was gone. to those out there who have lost central vision, get opinions (2ND,3RD,1001) on option of shift. without it i would have been 20/200ish ,instead of 20/20ish. would like personal e mail from others out there, i don't know anyone, personally, who understands what this disease is all about , no matter how many times you explain it, only those who've lived it will understand.
Date: -
Name:Kaaren. Email: <onewyldrose@earthlink.net>
Location:Hollywood, Florida USA
Date of First Histo Occurence:December 2000
Affected Eyes:not eyes, lungs
Other Stresses at Those Times:I am over 60 and disabled and there is a lot of stress all the time. Last year was the lung surgery, then I had a fire in my home. Things still not back to normal.
Laser Surgeries:. Results:n/a
Sub Macular Surgeries:. Results:n/a
Other Medical Treatment:I'm being treated for arthritis, and various other nagging complaints of growing
older. :) I occasionally take prednisone for pain. I did read somewhere on the
web that the drug Mevacor(?) for high cholestral contains lovestantin, and that
can cause histoplasmosis to flare up. Only found the one reference. Anyone else
hear/see that?
Nutritional Supplements:I take Vitamin B-12, min 1000mcg for circulation, calcium, and a multivitamin
each day.
Vision Products Used:Have worn glasses since 3d grade (come to think of it, when I was playing in the chicken coop) for extreme nearsightedness.
Additional Comments:I am hoping someone who had lung histo and subsequently discovered the occular type will see this and write me. I am not quite sure what symptoms of occular histo there are, but sure want to be on the lookout. Thanks for any answers, and God Bless you all. This is terrible stuff that not too many doctors have even heard of, much less done anything about!!
Date: -
Name:Margaret Della Porte. Email: <zelda105@aol.com>
Location:Lindenhurst, New York USA
Date of First Histo Occurence:6/71
Affected Eyes:rt. eye
Other Stresses at Those Times:I was 19 yrs old working in the Delivery room of a local hospital. I woke up one morning and it looked like I was looking through rose colored glasses in parts of my field of vision. It proceeded to darken until the entire center of vision was gone.
Laser Surgeries:one. Results:I developed a detached retina in '79 he felt that the scars weakened the retina.
Sub Macular Surgeries:2. Results:I had cryosurgery twice '79 and '81 it did not change my vision, they felt I had developed retinal tears and was leaking vitreal fluid.
Other Medical Treatment:In 1971 when the symptoms first occurred, they didn't know what to call it but they put me on large doses of oral steroids causing me to gain a lot of weight and get very depressed.
Nutritional Supplements:no
Vision Products Used:I do wear bifocals but it only for the left eye the rt. eye is 20/500 uncorectable.
Additional Comments:When this was first diagnosed I saw so many different specialists and they couldn't make an accurate diagnosis. It wasn't until 1982 that someone called it presumed Occular Histoplasmosis. It has never recurred in the left eye so my vision has remained unchanged for 30yrs. I have compensated well for it and there isn't much I can't appreciate. The only difficulty has been with my depth percetion.My fear is that if anything happens to my left eye, I will then be blind.
Date: -
Name:Margaret Della Porte. Email: <zelda105@aol.com>
Location:Lindenhurst, New York USA
Date of First Histo Occurence:6/71
Affected Eyes:
Other Stresses at Those Times:
Laser Surgeries:. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:
Nutritional Supplements:
Vision Products Used:
Additional Comments:
Date: -
Name:Renae. Email: <rlingle@ncfcomm.com>
Location:Norfolk, NE USA
Date of First Histo Occurence:05/2001
Affected Eyes:left
Other Stresses at Those Times:just graduated college, looking for job, financial stress
Laser Surgeries:1 PDT (6/4/01). Results:Very slow process, I had no change for a long time, then it got a lot worse and I lost most of my central vision, it is now August and I have begun to regain some of my central vision so I can at least read some.
Sub Macular Surgeries:. Results:
Other Medical Treatment:In 1993, when i was 15, lost all the central vision in my right eye due to leakage. At that time had laser surgery done, which has left very very large scars on the retina causing me to permanently lose central vision in that eye.
Nutritional Supplements:When first diagnosed with the histo, tried large dose of steroids, kept it from getting worse, but stopped using them after had the PDT done. Take a multi-vitamin with lutine (sp?)
Vision Products Used:Not currently, but am looking into what is available.
Additional Comments:I would really love to hear from others who have this type of situation. It's nice to kinda know others experiences, what to expect, probabilities, etc, any luck with disability claims,etc. What kind of work you are able to do, etc...please feel free to contact me. Thanx
Date: -
Name:Melody. Email: <quik46@aol.com>
Location:Columbus, OH USA
Date of First Histo Occurence:1997 and 2001
Affected Eyes:first left, then right
Other Stresses at Those Times:Working a very stressful full time job and a second job trying to maintain my credit and pride. Majority of stress was directly related to financial. So deep in debt at the time, felt like I was choking each and every day. Seriously overextended.
Laser Surgeries:1 - left eye in 1997. Results:Began noticing excessive floaters and double vision. Optometrist referred me to a Retina Specialist. Tried oral steroids - was not successful, then a steroid shot - also unsuccessful. Central vision continued to decline, specialist did perform laser surgery in left eye, got bleeding and leakage stopped, but was unable to restore central vision.
Sub Macular Surgeries:1 - right eye in 2001. Results:Undetermined at this time. Started noticing something not right with my vision in January, 2001, like my vision was on low lighting, could not make out details of faces or objects, actually thought it might be cataracts (did not even dream it was the histoplasmosis striking my only good eye left). Went back to see the Retinal Specialist and he told me there was a histo spot directly below my central vision, my heart sank and the tears flowed. First he tried oral steroids - which was unsucessful, then on February 21st I had the Photo Dynamic Therapy performed which also was unsucessful. During the waiting period to see if the PDT was successful, I was still able to drive (barely, probably not preferred by the other drivers on the road beside me) then I noticed even further decline in my vision to the point where I did not feel comfortable driving at all. Did an emergency appointment to see the specialist immediately and found that the histo spot had began to split off into my center vision. At this point, sub-macular surgery was performed on April 30, 2001. My vision in the right eye has improved thus far from 2160, to 2100+ (plus meaning I can make out a few of the letters in the 20/90 range). My last visit August 16, 2001 reflected vision still at 2100+ w/o refraction and possibly 20/60 with refraction. Even though the recovery process feels like an eternity, the specialist states it is too soon after the surgery to determine outcome.
Other Medical Treatment:A few years prior to the first ocular histo incident, I had two lung collapses (both in right lung, exactly one year apart from each other). At the time, was not aware of a disease called histoplasmosis. Since I was previously a smoker, I thought that had something to do with the lung incidents.
Nutritional Supplements:Tried Occuvite for a while. After speaking to the specialist about these vitamins, come to the conclusion that I was wasting my money. Not that the vitamins hurt your system, but did not really help the condition or prevent further flare-ups.
Vision Products Used:Not at this time. Specialist has requested that I be seen by a good optometrist to try and find some glasses that work to enhance the vision I still maintain (which is most of peripheral in both eyes and very low vision in center of both left and right eye. (This is considered with refraction as mentioned above).
Additional Comments:I moved from Florida to Ohio back in Augst of 1988 and have lived in Columbus, Ohio ever since. When I was diagnosed with histo first by the optometrist and asked such questions as "did you grow up on a chicken farm", "have you been exposed to birds", out of all honesty I thought the guy was a little nuts. I never had heard of such a crazy disease. Then after going to the specialist it was confirmed that this was the diagnosis and given further details of this disease and how 9 out of 10 people walking the streets in this Region would test positive for histoplasmosis. That doesn't mean it affects (if at all) everyone the same or targets the same organs of the body. In both the lung attacks and both eye attacks I was very tired and stressed in my life and feel this is the primary reason this disease was able to attack my immune system in such a way that it has. I did have parakeets in my bedroom when I was a little girl growing up, but cannot pinpoint where I actually first contracted the fungus and why it would wait all this time to strike. Maybe if I had stayed in Florida this would have never became active. Believe me, I have played a thousand "what if's" through my mind. After the histo attacked the left eye up until the right eye was attacked, I lead a pretty normal life, because I had a very strong right eye at the time which more than compensated for the loss in the left. I really did think it was a "freak" incident that would not occur again, until my right eye was attacked in Janaury, 2001. It has been an emotional rollercoaster for me and my family (my husband and soulmate for the past 15 years and my beautiful (did I say beautiful) 6 year old son, whom I would lay my life down for). I never thought my heart could handle as much pain as this disease has caused me, but somehow I survive. In the beginning (of Jan 2001) I had alot of bitterness, why me, life is so unfair, major depression and did not want to continue life on if I had to do it blind. I use to say in the past, the lord can take any of my senses, just please not my eyes. Well guess what, we don't always get what we want in life. I am sure there is a reason this has happened, but I just haven't figured out why yet (who am I to question, right?). One thing you find out in a crisis like this, is who your friends really are and who really cares about you, not just superficial). I use to think that working myself to death to protect my credit was the ultimate importance, but realize now that doesn't mean anything, and I mean anything at all. I am grateful for what vision I do still have and have hope of further vision to be restored (yes it is called faith, something foreign to me in the past). And as strange as this may sound, for the first time in my life "I truly do see" what matters in life. I pray for all of you that have suffered greatly from this disease and know painstakingly first hand the sadness you feel inside, but NEVER, NEVER LOSE HOPE. Please feel free to e-mail me to talk. If I can help even one person to feel better or visa versa, it was worth the effort to type this. God bless.
Date: -
Name:clipart. Email: <bpofmwn@bay-watch.com>
Location: USA
Date of First Histo Occurence:
Affected Eyes:
Other Stresses at Those Times:
Laser Surgeries:. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:
Nutritional Supplements:
Vision Products Used:
Additional Comments:Nice site...
Date: -
Name:jobiah sabelko. Email: <sabelko@yahoo.com>
Location:north brunswick , NJ USA
Date of First Histo Occurence:7/2001
Affected Eyes:right
Other Stresses at Those Times:nothing out of the ordinary
Laser Surgeries:1 PDT. Results:Hopefully a complete success (just done 72 hours ago).I'm
Sub Macular Surgeries:. Results:
Other Medical Treatment:no
Nutritional Supplements:Standard multivitamin
Vision Products Used:no
Additional Comments:I grew up in WI and IL and likely contracted histo there since according to the doctors it is very rare in NJ area.
Date: -
Name:paul maerz. Email: <iammaerz@interl.net>
Location:keokuk, iowa USA
Date of First Histo Occurence:1991
Affected Eyes:right, left
Other Stresses at Those Times:I operate my own business (lawn & garden store) so there's always some stress, but not aware of undue stress at time of onset of hysto.
Laser Surgeries:1. Results:Laser stopped hysto spot in my good (left) eye from reaching center of macula when spot showed up 4 years ago. No progression since, thank God.
Sub Macular Surgeries:none. Results:N/A
Other Medical Treatment:Steroids given at onset of original hysto in right eye but didn't help. Spot started out very small in direct center of macula and spread to take all my central vision in right eye.
Nutritional Supplements:No, but should I be? Any reasearch to say what supplements may help?
Vision Products Used:Thankfully, I can still read with left eye, but I use glasses for near-sightedness
Additional Comments:Interested in talking to anyone with this experience or interest in hysto (ocular). It's a little scarey, and it would be nice to know what to expect in years to come. When you've lost central vision in one eye and narrowly missed losing it in the other it makes you much more aware of how important sight is! What we can do to retain the vision we have can depend on us all sharing information. We can learn from others what they feel helps and we can help each other keep abreast of recent developments or treatments. Thanks for listening!
Date: -
Name:Jane Morrow Below. Email: <jbelow@usi.edu>
Location:Evansville, IN USA
Date of First Histo Occurence:2/96
Affected Eyes:both
Other Stresses at Those Times:Asthma since childhood. Under great stress at the time. Newly married and renovating an old farmhouse!
Laser Surgeries:1. Results:Lost only a tiny amount of vision in right eye due to scarring.
Sub Macular Surgeries:. Results:
Other Medical Treatment:
Nutritional Supplements:ICaps, multiple vitamins, extra Vit C and E.
Vision Products Used:I wear contacts or glasses
Additional Comments:
Date: -
Name:Karyn Rogers. Email: <puff_k@hotmail.com>
Location:Whakatane, New Zealand
Date of First Histo Occurence:Jan 2001
Affected Eyes:Left
Other Stresses at Those Times:
Laser Surgeries:nil. Results:
Sub Macular Surgeries:nil. Results:
Other Medical Treatment:This disease is unheard of in New Zealand. My specialist is as new to this as me. I Have used Prednizone to no avail. No other treatment.
Nutritional Supplements:
Vision Products Used:
Additional Comments:I have no central vision in my left eye. My right eye has histo spots but no changes in vision.
Date: -
Name:Trish Flanagan. Email: <granny.grumps@sympatico.ca>
Location:Kitchener, Ontario Canada
Date of First Histo Occurence:July/August, 1979
Affected Eyes:Right
Other Stresses at Those Times:Usual stress of raising two small children and running a household
Laser Surgeries:n/a. Results:
Sub Macular Surgeries:1. Results:Successful removal of two veins from left eye
Other Medical Treatment:Massive doses of Prednisone in 1979 for about six months with no change in vision in right eye.
Nutritional Supplements:Tahitian Noni Juice
Vision Products Used:glasses, CCTV, 19" monitor
Additional Comments:I was told in 1983 that there were two veins sitting on the edge of central vision. These remained dormand until December, 1999 when a change was noticed. In the month before I had them removed, the leaked blood into my central vision and my vision has not returned - 7/10/01
Date: -
Name:MJ. Email: <mjfarris@altavista.com>
Location:Albany, OH USA
Date of First Histo Occurence:03/31/93
Affected Eyes:None. Skin lesions.
Other Stresses at Those Times:EXTREME stress.
Laser Surgeries:None.. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:I initially was hospitalized with pneumonia followed by 1 1/2 yr extreme fatigue, low-grade temp, skin lesions erupted on legs and arms. Treated with Sporonox x 3 years. Still have not gained full energy level.
Nutritional Supplements:Vitamins.
Vision Products Used:None.
Additional Comments:It took 1 1/2 before diagnosis, 3 years therapy and I have not felt well since initial onset of pneumonia.
Date: -
Name:Nettie Monroe. Email: <nettiem@aol.com>
Location:St. Paul, MN USA
Date of First Histo Occurence:8/2000
Affected Eyes:Right
Other Stresses at Those Times:none
Laser Surgeries:2. Results:1st surgery was regular laser... 2nd surgery was photodynamic laser with visudine -- seems to have stabilized the vision loss in right eye.
Sub Macular Surgeries:. Results:
Other Medical Treatment:none
Nutritional Supplements:
Vision Products Used:no
Additional Comments:the blind spot in my right eye does affect how I do things -- BUT my brain is filling in the missing information and with both eyes, my vision strength remains the same... Could be useful to collect where people grew up or spent time in their lives to help others isolate where the histo fungus is "ripe"... Good wishes to all. Blessed be.
Date: -
Name:Alice Wentz. Email: <juls1@msn.com>
Location:West Lafayette, OH USA
Date of First Histo Occurence:November 1971
Affected Eyes:Both
Other Stresses at Those Times:I had a newborn that had surgery on her pyloric muscle at 2-3 weeks of age. I have been unable to drive since 1973 because the disease hit my central vision in both eyes.
Laser Surgeries:NONE. Results:
Sub Macular Surgeries:NONE. Results:
Other Medical Treatment:Medical treatment in 1971 was large amounts ofcortizone on a daily basis. This lead to weight gain and depression. I was on the medication for approx 4-5 years. I recently spoke to the doctor that treated me and he gave me the name of David Dorf @ OSU Hospital in Columbus,OH and that I should contact him if it should ever reoccur.
Nutritional Supplements:NONE
Vision Products Used:I use a magnifying glass.
Additional Comments:Please refer me to some websites that will provide with recent research information.
Date: -
Name:Sandra Dauzat. Email: <dauza336@bellsouth.net>
Location:Marksville,LA., US USA
Date of First Histo Occurence:1992
Affected Eyes:both eyes
Other Stresses at Those Times:No not at the time. I new I had the histo spots and one day my vison got blurry.I went for a exam and was told that I could loose my vison,which I did loose my center vision in my left eye.
Laser Surgeries:none. Results:
Sub Macular Surgeries:one. Results:I did not regain my center vision . And now I have the same thing in my right eye
Other Medical Treatment:I have to been seen every two to three months unless it gets worst
Nutritional Supplements:no
Vision Products Used:I have been using reading glasses only for the past year but now I have to have them for distance also
Additional Comments:I could use someone to talk to about this diease and if I am getting the right treatments.
Date: -
Name:Cathy Williamson. Email: <Cathy625@webtv.net>
Location:Brook, Indiana USA
Date of First Histo Occurence:march 1994
Affected Eyes:not yet
Other Stresses at Those Times:My lifestyle has always been stressful
Laser Surgeries:. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:So far my eyes are ok with the exception that I now where bifocals. The Histo hit my lungs and in July 1994 I had to have a left lobal thoracotomy. I now have COPD and require nebulizer treatments. I was never given any drug period for the Histo itself.
Nutritional Supplements:I do take a vitamin and Slow-Mag
Vision Products Used:
Additional Comments:I would appreciate info about this problem. Thanks!
Date: -
Name:Amy Rousse. Email: <arousse@trammellcrow.com>
Location:Memphis, TN USA
Date of First Histo Occurence:10/96
Affected Eyes:right
Other Stresses at Those Times:
Laser Surgeries:2. Results:both successful - 3rd recurrence just started
Sub Macular Surgeries:1. Results:successful - vision completely restored - had surgery after first time
Other Medical Treatment:none
Nutritional Supplements:none
Vision Products Used:nonr
Additional Comments:
Date: -
Name:Aaron Callahan. Email: <tabasco3@home.com>
Location:San Diego, CA USA
Date of First Histo Occurence:5/2001
Affected Eyes:Left, Right
Other Stresses at Those Times:Just regular work related stress
Laser Surgeries:1 (Left Eye). Results:Appears to have stopped the bleeding. Have a large blind spot just to the left of my central vision.
Sub Macular Surgeries:. Results:N/A
Other Medical Treatment:N/A
Nutritional Supplements:Just vitamins
Vision Products Used:N/A
Additional Comments:Two weeks after laser surgery on my left eye. Still in shock I suppose. It is taking some getting used to. My brain is now (I think) beginning to process both images into one somewhat cohesive image. I hate telling people about it, because it puts them in a really awkward situation. I appreciate everybody's concern, but I don't want anyone's pity. I just want to adjust, and go on with my life. But, I have to admit that this is the most frightening thing that's happened to me. I don't know what I'll do if the bleeder in my right eye goes near the macula. We're presently keeping our eyes on it (haha). From what I understand this condition progresses somewhat slowly. For that I am glad, because my first child will be born in September. I am telling myself that even in the worst case scenario, I'll just have to learn to see the world without my vision. I'm a very quick learner, but how does one support his family in such a state? I'll cross that bridge if and when it comes. I also want to say that it breaks my heart to think of others going through this. I wouldn't wish it upon my worst enemy (If I had one that is).
Date: -
Name:chuck. Email: <chuckw1206@webtv.net>
Location: new smyrna beach, fl USa
Date of First Histo Occurence:1982
Affected Eyes:both
Other Stresses at Those Times:high stress. both parents died last6 mos. off work w/ knee injury
Laser Surgeries:5. Results:lost central vis right left: 2 laser scars medial & distal both impinging on fovea. small area of vision left untreatable
Sub Macular Surgeries:. Results:
Other Medical Treatment:
Nutritional Supplements: lutein
Vision Products Used:no
Additional Comments:unable to drive now. new episode started may
Date: -
Name:brian s. richey. Email: <hawkish62@yahoo.com>
Location:bourbonnais, IL United States
Date of First Histo Occurence:approx. 1994
Affected Eyes:first right, now left
Other Stresses at Those Times:
Laser Surgeries:. Results:
Sub Macular Surgeries:1. Results:my central vision was blurred after surgery.also, my peripheral vision in left eye is bad.
Other Medical Treatment:
Nutritional Supplements:
Vision Products Used:
Additional Comments:i now have a blurred spot in "good" eye. i went to eye doctor ay onset of new problem but they could not find a problem until a year after i went back. they dont appear to be concerned but i have a large blur spot in good eye now. i wont let this stop me from doing anything. i appreciate all that i do see.
Date: -
Name:Irene Cornue. Email: <cornueL@aol.com>
Location:Jrdan, New York USA
Date of First Histo Occurence:3-27-01
Affected Eyes:no- lungs
Other Stresses at Those Times:I was being checked for cancer. I am a breast cancer survivor of 3 years.
Laser Surgeries:. Results:
Sub Macular Surgeries:1. Results:Lung biopsy turned out to be histo.
Other Medical Treatment:They removed the spot.
Nutritional Supplements:No
Vision Products Used:No
Additional Comments:No
Date: -
Name:Lora. Email: <jda@defnet.com>
Location:Defiance, Ohio USA
Date of First Histo Occurence:April 1982
Affected Eyes:left
Other Stresses at Those Times:its been so long ago ,But none that I remember
Laser Surgeries:1. Results:made vision worse
Sub Macular Surgeries:1. Results:lost all useable vision
Other Medical Treatment:
Nutritional Supplements:calcium,multivitamin
Vision Products Used:nasal prism
Additional Comments:
Date: -
Name:tonya. Email: <robton@grnco.net>
Location: arkansas USA
Date of First Histo Occurence:050701
Affected Eyes:both
Other Stresses at Those Times:
Laser Surgeries:. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:I personally don't have this disease, my sister was diagnosed today, I am worried about her already poor vision, what is to be expected, what can be done??
Nutritional Supplements:
Vision Products Used:
Additional Comments:
Date: -
Name:tonya
Location: USA
Date of First Histo Occurence:
Affected Eyes:
Other Stresses at Those Times:
Laser Surgeries:. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:
Nutritional Supplements:
Vision Products Used:
Additional Comments:
Date: -
Name:Fran Koning. Email: <colimar@geraldton.lakeheadu.ca>
Location:Jellicoe, Ontario Canada
Date of First Histo Occurence:August, 2000
Affected Eyes:Right
Other Stresses at Those Times:Own and operate a tourist resort. Have 2 daughters, one in college, the other 2 years. Always under stress.
Laser Surgeries:. Results:
Sub Macular Surgeries:1. Results:Not successful
Other Medical Treatment:None
Nutritional Supplements:Multi-vitamins, vitamin E, zinc
Vision Products Used:No
Additional Comments:My eye doctor says that my case is totally rare for this part of the country. I think I know how it occurred, but hindsight is 20/20 of course. However, even my hindsight is not 20/20 anymore!
Date: -
Name:pam. Email: <phelmick@zoomnet.net>
Location:wheelersburg, ohio USA
Date of First Histo Occurence:april 9, 2001
Affected Eyes:both
Other Stresses at Those Times:I have high blood pressure, ususally goes up during stressful times. I am an Rn and an administrator of a home health agency.
Laser Surgeries:one so far. Results:I had the surgery on april 11, 2001, and continue to develop a more pronounced visual deformity. had to make an early unexpected visit to my specialist because of this and he says there are abnormal blood vessels around the lasered area. treatment? will follow up in a week and a half.
Sub Macular Surgeries:none. Results:
Other Medical Treatment:no
Nutritional Supplements:no
Vision Products Used:I have worn glasses since I was seven I am now 40.
Additional Comments:Advice that I have is to make sure you have a good optometrist, who will chack your eyes appropriately. I am severely myopic any way with 600 and 650 with out glasses. My eyes in all these years had never been dilated up until now. (lovely experience). Apparently I have several histo spots in both eyes. Unfortunately this is affecting the better of the two eyes.
Date: -
Name:Terry. Email: <WTClick@home.com>
Location:Des Moines, Iowa USA
Date of First Histo Occurence:Spring of 1986
Affected Eyes:Right
Other Stresses at Those Times:
Laser Surgeries:1. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:
Nutritional Supplements:
Vision Products Used:
Additional Comments:
Date: -
Name:Carolyn. Email: <cdavies48@hotmail>
Location:Kelowna, British Columbia Canada
Date of First Histo Occurence:Sept 1990
Affected Eyes:first my left now in 95 both
Other Stresses at Those Times:I am a single mother of three as far as stress goes I think it goes with the territory
Laser Surgeries:three times on second eye. Results:left eye is totally gone, however, my right eye I have some periferial. Surgery stopped the bleeding but left large scar. It is still better then what I went through the first time.
Sub Macular Surgeries:none. Results:
Other Medical Treatment:No, however, with the limited site I had left I forced myself to play solitaire with the cards from C.N.I.B. This helped me a great deal. I have improved my limited vision. This teaches the brian to recognize my corner vision seeing the centre vision is out of wack.
Nutritional Supplements:No just multi vitamins
Vision Products Used:I have a talking/large print computor, I am looking into an aid to help me with a job oportunity.
Additional Comments:I was a working mother up until Sept 95. That day my life to a complete turn around. I remember the only things that frightened me were am I going to be able to support my children and see my only little girl grow up to a young lady. Well we have managed just fine not great. My daughter is going to graduate from High School this year. Oh and by the way she is gorgeous. So if any one has a little site play solitaire it really does help. Oh I forgot to mention I play several several several games a day. If any one comes by and says that card doesn't go on that pile. Tell them it looks good to you.
Date: -
Name:Carolyn. Email: <cdavies48@hotmail>
Location:Kelowna, British Columbia USA
Date of First Histo Occurence:Sept 1990
Affected Eyes:first my left now in 95 both
Other Stresses at Those Times:I am a single mother of three as far as stress goes I think it goes with the territory
Laser Surgeries:three times on second eye. Results:left eye is totally gone, however, my right eye I have some periferial. Surgery stopped the bleeding but left large scar. It is still better then what I went through the first time.
Sub Macular Surgeries:none. Results:
Other Medical Treatment:No, however, with the limited site I had left I forced myself to play solitaire with the cards from C.N.I.B. This helped me a great deal. I have improved my limited vision. This teaches the brian to recognize my corner vision seeing the centre vision is out of wack.
Nutritional Supplements:No just multi vitamins
Vision Products Used:I have a talking/large print computor, I am looking into an aid to help me with a job oportunity.
Additional Comments:I was a working mother up until Sept 95. That day my life to a complete turn around. I remember the only things that frightened me were am I going to be able to support my children and see my only little girl grow up to a young lady. Well we have managed just fine not great. My daughter is going to graduate from High School this year. Oh and by the way she is gorgeous. So if any one has a little site play solitaire it really does help. Oh I forgot to mention I play several several several games a day. If any one comes by and says that card doesn't go on that pile. Tell them it looks good to you.
Date: -
Name:Rebecca A. Hudson. Email: <HudsonRV1@aol.com>
Location:Cowpens, SC United States
Date of First Histo Occurence:Sept.1987
Affected Eyes:left--now both
Other Stresses at Those Times:stress-stress
Laser Surgeries:one-. Results:he built a dam to save eye but took out all central vision and the rest so blured & warped.
Sub Macular Surgeries:none. Results:
Other Medical Treatment:medpacks & now predizone to many times to count
Nutritional Supplements:vitamines-grapefruit seed-green tea
Vision Products Used:magnifier
Additional Comments:hoping for a cure for this.my retina Dr.is trying to not lazer this eye have two large blind spots in good eye.I am just in the last month admitted that I have low vision.I am thankful for what sight I have left.last yr.my vision was 20/100 in my good eye.I know it is worse now. am having an active bleed now,but maybe this will stop too.I have never met anyone else with this. I am sorry that there is anyone else but your comments have heiped me and I am gratful for this site.
Date: -
Name:Rebecca A. Hudson. Email: <HudsonRV1@aol.com>
Location:Cowpens, SC United States
Date of First Histo Occurence:Sept.1987
Affected Eyes:left--now both
Other Stresses at Those Times:stress-stress
Laser Surgeries:one-. Results:he built a dam to save eye but took out all central vision and the rest so blured & warped.
Sub Macular Surgeries:none. Results:
Other Medical Treatment:medpacks & now predizone to many times to count
Nutritional Supplements:vitamines-grapefruit seed-green tea
Vision Products Used:magnifier
Additional Comments:hoping for a cure for this.my rina Dr.is trying to not lazer this eye have two large blind spots in good eye.I am just in the last month admitted that I have low vision.I am thankful for what sight have left.& grateful for this sight.last yr.my vision was 20/100 in my good eye.I know it is worse now. am having an active bleed now,but maybe this will stop too.I have never met anyone else with this. I am sorry that there is anyone else but your comments have heiped me and I am gratful for this site.
Date: -
Date of First Histo Occurence:
Affected Eyes:
Other Stresses at Those Times:
Laser Surgeries:. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:
Nutritional Supplements:
Vision Products Used:
Additional Comments:
Date: -
Name:Jodi
Location:Cincinati, OH USA
Date of First Histo Occurence:11/00
Affected Eyes:Left
Other Stresses at Those Times:None that I can think of the first time (I was a new mom). The other 2 times I was highly stressed about the histo
Laser Surgeries:1 + 1 PDT. Results:Did nothing. Dr said there was too much pressure and it just kept bleeding.
Sub Macular Surgeries:1. Results:it's been 3 1/2 months and my vision has gotten better. I don't know how much but a marked improvement. I was feeling very optomistic until I read these other entries and all of the submac failures and reoccurrences. Now I'm terrified.
Other Medical Treatment:Just the PDT
Nutritional Supplements:no
Vision Products Used:no - same glasses as before
Additional Comments:I am lucky that I can go through life rather normally right now. I am 29 and a new mom and I'm honestly very scared at what the future brings for my eyesight.
Date: -
Name:abbie boyle. Email: <abs@hotmail.com.au>
Location:sale, AUSTRALIA
Date of First Histo Occurence:29TH 3RD 2001
Affected Eyes:
Other Stresses at Those Times:I LOVE YOUR BOOK IS SO FUCKEN HOT!!!!
Laser Surgeries:51471117. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:
Nutritional Supplements:
Vision Products Used:
Additional Comments:
Date: -
Name:Vicki Nash. Email: <vnash@hotmail.com>
Location:Montross, VA USA
Date of First Histo Occurence:Sept. 1996
Affected Eyes:left
Other Stresses at Those Times:
Laser Surgeries:1. Results:I have been very lucky. I have most of my sight and have not had any reoccurances.
Sub Macular Surgeries:. Results:
Other Medical Treatment:
Nutritional Supplements:no
Vision Products Used:no
Additional Comments:
Date: -
Name:Linda Middleton. Email: <lmiddleton63@aol.com>
Location:Carson City, Nevada USA
Date of First Histo Occurence:3/01/2001
Affected Eyes:left
Other Stresses at Those Times:Hey, this is stresful!
Laser Surgeries:. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:
Nutritional Supplements:Lutein, multivitamins
Vision Products Used:Not yet
Additional Comments:Yes, I am shocked
Date: -
Name:Rita Durham. Email: <JoeRitaF@aol.com>
Location:Niceville, FL USA
Date of First Histo Occurence:March 94
Affected Eyes:right
Other Stresses at Those Times:
Laser Surgeries:. Results:
Sub Macular Surgeries:2. Results:The first surgery gave me 20/40 vision for almost a year. Then I had a reoccurrence. I now have 20/45.
Other Medical Treatment:After each surgery I went to the doctor once every few monthes. Now 6 years later I go once a year just to make sure it's gone.
Nutritional Supplements:No
Vision Products Used:no
Additional Comments:I was only 14 years old when diagnoised with pohs. I did not think that it was a common as it is. Now that I'm older I feel the need to research the thing that destroyed my teenage years. I am thankfull for my wonderful doctor Dr.Gupta in pensacola florida he was wonderful and acted quickly to help. For everyone that has pohs just stay strong there is much support out there for you.
Date: -
Name:RickTuominen. Email: <kvachkris@msn.com>
Location:Marion, IA USA
Date of First Histo Occurence:December 2000
Affected Eyes:Right
Other Stresses at Those Times:None
Laser Surgeries:. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:PDT - 4 treatments
Nutritional Supplements:NO
Vision Products Used:No
Additional Comments:Still undergoing PDT treaments at University of Iowa Hospitals and Clinics in Iowa City, Iowa
Date: -
Name:Mary Ann. Email: <theholmesfamily@sympatico.ca>
Location:Simcoe, Ontario Canada
Date of First Histo Occurence:Spring 1997 - Summer 2000
Affected Eyes:both eyes
Other Stresses at Those Times:Nothing out of the ordinary for a mother of two small boys!
Laser Surgeries:Three. Results:Histo scar tissue started bleeding into macular of right eye. Laser surgery to stop bleeding distroyed central vision in the right eye. Last summer, a Histo spot was detected in left eye, this time it was off the central vision area, again laser surgery was performed to prevent further damage. Now there is a lazer spot (blurry area) in the left eye.
Sub Macular Surgeries:. Results:
Other Medical Treatment:
Nutritional Supplements:
Vision Products Used:
Additional Comments:My first occurance of Histo was very simular to early onset macular degeneration. I was diagnoised as Presumed Histoplasmosis. Thank goodnes my optromotist provided me with a grid and suggested I check my eyes weekly for any changes, spots or waves!! At the onset of the desease, I could not find any information at the library or on the web. This left me very skeptical and worried for my two young boys, beleiveing that I could be carrier of a eye disorder gene or something like that. Thank you for your web site and information about Histo in the Eyes. I am now more informed and check my grid daily. I know now that Histo spots can keep coming back and my immune system will not ward off these attacks. Early detection of this fundus is essential.
Date: -
Name:Donnagail, age 44. Email: <twinxys1xx>
Location:lancaster, pa USA
Date of First Histo Occurence:oct 1996
Affected Eyes:both . Histo spots in both eyes but have remained innactive in the right eye.
Other Stresses at Those Times:Twin pregnency, c-section, gallbladder surgery and transfer out of state all in the months before 1st occurrence 2nd occurrence 2 months after second c-section and another move.
Laser Surgeries:2. Results:1.1996 lost 25% of central vision 2.1998 lost 25% of central vision. Thereby making it so I had lost all of the upper central vision.I still have the pinpoint central vision.
Sub Macular Surgeries:. Results:
Other Medical Treatment:3rd occurrance just 2 months after 2nd. Growth of new blood vessels...no bleeding. Treated with megga doses of prednasone. lost 20% of vision in same (left)eye due to the growth of blood vessels
Nutritional Supplements:multi vitamins. I have heard that eating 1/2 cup of spinach a day can stop the progression of this disease. Ther is some kind of vitamin or mineral that is helpful. If any one has information, please contact me.
Vision Products Used:no but because of my age I need reading glasses
Additional Comments:Recently saw Dr Susan Bressler at Wilmer Eye Institute, suppose to be top in the field...any comments? I believe that stress, physical psycological and emotional can cause outbreaks. I have heard that kemo treatments lower ones resistance to histo, along with other immune system problems ie;lupus etc. If anyone has any info on the probability of loosing all ones central vision to this devistang sight taking disease, please let me know. Also I'm willing to corrospond with anyone, just realise I have 3 preschoolers and may not be quick at getting back to you. PS I spent summers on my grandmothers farm as a kid. she had chickens and I'm sure that is where I got the initial histo.
Date: -
Name:Kathleen Wallace. Email: <kaw105@hotmail.com>
Location:Chattanooga, TN USA
Date of First Histo Occurence:August, 1994
Affected Eyes:both
Other Stresses at Those Times:I had just given birth to my third child.
Laser Surgeries:3. Results:I'm still working and leading a very active life. I have 20/20 (corrected after laser) in my left eye, but my right eye is weak.
Sub Macular Surgeries:1 - right eye. Results:I had the surgery in Sept. 1994 at Emory in Atlanta. It was a great success and drastic improvement.
Other Medical Treatment:No
Nutritional Supplements:No
Vision Products Used:No
Additional Comments:I am a 35 year old mother of four. I was first diagnosed six years ago and have been scared to death every since. I credit the vision I have today to the staff at Emory. I try to remain positive and informed. I'm also trying to live a normal life & not worry about this everyday. However, I think that I have a new spot that has activated in my "good eye." I have a new baby girl and all the worries that you can imagine. This is most unfair. Pray for your doctors and a cure!!! I am so sorry that anyone else has to go through this!
Date: -
Name:Chrysi Rubin. Email: <chrysi_rubin@hotmail.com>
Location:Spruce Grove, Alberta Canada
Date of First Histo Occurence:December 26, 1998
Affected Eyes:LEFT
Other Stresses at Those Times:none
Laser Surgeries:. Results:
Sub Macular Surgeries:1. Results:Completely stopped the bleeding and branching. No reoccurances since then. I have a flouracine (sp?) angiogram one a year to watch it though.
Other Medical Treatment:non
Nutritional Supplements:ginsing and multivitamin
Vision Products Used:glasses, vision is great though, pretty close to 20 20
Additional Comments:GET SURGURY BY A GREAT RETINAL SURGEON, IN MY OPINION LASER DOES NOT WORK!
Date: -
Name:Kelly Goodknight. Email: <kelnton@netins.net>
Location:Eldora, Iowa USA
Date of First Histo Occurence:April 17,2000
Affected Eyes:Lung and whole left side
Other Stresses at Those Times:none
Laser Surgeries:none. Results:
Sub Macular Surgeries:none. Results:
Other Medical Treatment:Heavy doses of Spornox
Nutritional Supplements:not any more
Vision Products Used:just glasses
Additional Comments:Histo has totaly messed up my life, I am 40 and this has caused stroke like symtoms, I fill up with fluid. I am praying some one out there will find a cure soon, I am so afraid of that it will take me down for good. Someone please help.
Date: -
Name:Kelly Goodknight. Email: <kelnton@netins.net>
Location:Eldora, Iowa USA
Date of First Histo Occurence:April 17,2000
Affected Eyes:Lung and whole left side
Other Stresses at Those Times:
Laser Surgeries:. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:
Nutritional Supplements:
Vision Products Used:
Additional Comments:
Date: -
Name:Tracy. Email: <tracy.beeman@trinity.edu>
Location: TX USA
Date of First Histo Occurence:Dec. '99
Affected Eyes:left
Other Stresses at Those Times:everyday life...recurrences since then due to stress related in school...
Laser Surgeries:5. Results:first surgery stopped it for a year, but the following four have seemed to only stop it for a few days.
Sub Macular Surgeries:none. Results:
Other Medical Treatment:none
Nutritional Supplements:multi-vitamins not for eye
Vision Products Used:n/a
Additional Comments:I'm eighteen and attending a university. I have surgery today because it is getting much closer to the fovea, basically wrapping around it. Hopefully, laser will stop it this time and I will retain no flare ups in my right eye. I feel for all those with this disease and I understand how scary it can be.
Date: -
Name:Dannita. Email: <dnete@hotmail.com>
Location:Deer Park, TX USA
Date of First Histo Occurence:March 1980
Affected Eyes:Both
Other Stresses at Those Times:October 1997 lost my dad.
Laser Surgeries:2. Results:Good first time--lasted 7 years
Second time--lasted two weeks
Sub Macular Surgeries:2. Results:First surgery in October 1997---improved to 20/50 vision over the next several months. Second surgery December 1999--resuts not so good. Only improved to 20/80 and now I am having problems again.
Other Medical Treatment:none for my eyes
Nutritional Supplements:
Vision Products Used:I have magnifying glasses of varying size and strenght scattered all over my house. I cannot read with my glasses on. I must use a magnifying glass and it is still extremely difficult.
Additional Comments:The last three years have been a very difficult time for me. After the surgery in 1997 I did pretty well emotionally. I felt really positive about my condition. When things started going south again I got really depressed. Since then Ihave had a hard time getting a handle on my emotions. I have a strong religious background and I just put my life and my vision in the hands of the Lord.I know he will bring me through this. To all of you who have this problem my thoughts and my prayers are with you. I would love to hear from any of you who care to write. I will gladly respond to your mail. God Bless each of you.
Date: -
Name:Joan Dougall. Email: <dougalls@idirect.com>
Location:Unionville, Ontario L3R 0C5 Canada
Date of First Histo Occurence:May/00
Affected Eyes:Left
Other Stresses at Those Times:Looking after my mother who passed away from cancer in December/00 and raising two teenagers while my husband lives in New York and only comes home every other weekend.....the usual stresses.
Laser Surgeries:. Results:
Sub Macular Surgeries:one. Results:Dr. Mandelcorn considers the surgery a success as the abnormal blood vessels are gone and show no signs of recurring, however, my central vision is still very poor. I can hardly read the big "E" on the vision chart. Since the surgery was Oct. 31/00, I am still hoping for some improved vision.
Other Medical Treatment:
Nutritional Supplements:No
Vision Products Used:No. Just regular glasses and contact lenses.
Additional Comments:
Date: -
Date of First Histo Occurence:
Affected Eyes:
Other Stresses at Those Times:
Laser Surgeries:. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:
Nutritional Supplements:
Vision Products Used:
Additional Comments:
Date: -
Name:Leah. Email: <lkadkins72@hotmail.com>
Location:Louisa, Kentucky USA
Date of First Histo Occurence:December of 1998
Affected Eyes:left eye
Other Stresses at Those Times:I have been taking medication for Panic Disorder for 8 years
Laser Surgeries:none. Results:n/a
Sub Macular Surgeries:one. Results:n/a
Other Medical Treatment:I've not had any laser or macular surgeries because my Histo is located in the very center of my left eye. By the time I was diagnosed with Histo, my eye already had a huge scar in my retina. My eye doctor said that because of the already existing scar and also the location of the Histo in my eye, that any surgeries wouldn't help me any.
Nutritional Supplements:no
Vision Products Used:Just eye glasses
Additional Comments:I am 27 years old and have had this eye disease for 2 years now. And after reading these surveys and other experiences of people suffering with Histo, I consider myself very lucky. I have had only the one occurence with Histo. However, in my right eye the my doctor has found an abnormality. As of now he doesn't consider it to be a threat of any kind. I have a huge scar behind my left eye and only see a blur when I look straight ahead. I can see a little out of the corner of my eye though. I feel very badly for people who have suffered severly with this disease. In a lot of the experiences that I read most people had these occurences in both eyes, or have had reoccurences through the years. My Histo is stable now and has been for 2 years. I sincerely hope that a cure is found for this disease before many more people have to go through this. Loosing your vision is a very scary thing to go through. A person's sight is truly a valuable gift that most take for granted. I feel that this disease isn't well known about like it should be. Too many people suffer from this for it to be too rare of a disease. No one in my family or my friends had ever heard of this until I was diagnosed with it. I have the fear that I will loose the vision in my right eye now. With all the natural fears that a person goes through in their life, loosing your vision shouldn't have to be one of them.It is truly a terrifying experience. And my heart goes out to the many people who have suffered more severly than I have.
Date: -
Date of First Histo Occurence:
Affected Eyes:
Other Stresses at Those Times:
Laser Surgeries:. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:
Nutritional Supplements:
Vision Products Used:
Additional Comments:
Date: -
Name:Leah. Email: <lkadkins72@hotmail.com>
Location:Louisa, Kentucky USA
Date of First Histo Occurence:December of 1998
Affected Eyes:left eye
Other Stresses at Those Times:I have been taking medication for Panic Disorder for 8 years.
Laser Surgeries:none. Results:N/A
Sub Macular Surgeries:none. Results:N/A
Other Medical Treatment:I've not had any laser or macular surgeries because my Histo is located in the very center of my left eye. By the time I was diagnosed with Histo, my eye already had a huge scar in my retina. My eye doctor said that because of the already existing scar and also the location of the Histo in my eye, that any surgeries wouldn't help me any.
Nutritional Supplements:no
Vision Products Used:Just eye glasses.
Additional Comments:I am 27 years old and have had this eye disease for 2 years now. And after reading these surveys and other experiences of people suffering with Histo, I consider myself very lucky. I have had only the one occurence with Histo. However, in my right eye my doctor has found an abnormality. As of now he doesn't consider it to be a threat of any kind. I have a huge scar behind my left eye and only see a blur when I look straight ahead. I can see a little out of the corner of my eye though. I feel very badly for people who have suffered severly with this disease. In a lot of the experiences that I read most people had these occurences in both eyes, or have had reoccurences through the years. My Histo is stable now and has been for 2 years. I sincerely hope that a cure is found for this disease before many more people have to go through this. Loosing your vision is a very scary thing to go through. A person's sight is truly a valuable gift that most take for granted. I feel that this disease isn't well known about like it should be. Too many people suffer from this for it to be too rare of a disease. No one in my family or my friends had ever heard of this until I was diagnosed with it. I have the fear that I will loose the vision in my right eye now. With all the natural fears that a person goes through in their life, loosing your vision shouldn't have to be one of them.It is truly a terrifying experience. And my heart goes out to the many people who have suffered more severly than I have.
Date: -
Name:Leah. Email: <lkadkins72@hotmail.com>
Location:Louisa, Kentucky USA
Date of First Histo Occurence:December of 1998
Affected Eyes:left eye
Other Stresses at Those Times:I have been taking medication for Panic Disorder for 8 years.
Laser Surgeries:none. Results:N/A
Sub Macular Surgeries:none. Results:N/A
Other Medical Treatment:I've not had any laser or macular surgeries because my Histo is located in the very center of my left eye. By the time I was diagnosed with Histo, my eye already had a huge scar in my retina. My eye doctor said that because of the already existing scar and also the location of the Histo in my eye, that any surgeries wouldn't help me any.
Nutritional Supplements:no
Vision Products Used:Just eye glasses.
Additional Comments:I am 27 years old and have had this eye disease for 2 years now. And after reading these surveys and other experiences of people suffering with Histo, I consider myself very lucky. I have had only the one occurence with Histo. However, in my right eye the my doctor has found an abnormality. As of now he doesn't consider it to be a threat of any kind. I have a huge scar behind my left eye and only see a blur when I look straight ahead. I can see a little out of the corner of my eye though. I feel very badly for people who have suffered severly with this disease. In a lot of the experiences that I read most people had these occurences in both eyes, or have had reoccurences through the years. My Histo is stable now and has been for 2 years. I sincerely hope that a cure is found for this disease before many more people have to go through this. Loosing your vision is a very scary thing to go through. A person's sight is truly a valuable gift that most take for granted. I feel that this disease isn't well known about like it should be. Too many people suffer from this for it to be too rare of a disease. No one in my family or my friends had ever heard of this until I was diagnosed with it. I have the fear that I will loose the vision in my right eye now. With all the natural fears that a person goes through in their life, loosing your vision shouldn't have to be one of them.It is truly a terrifying experience. And my heart goes out to the many people who have suffered more severly than I have.
Date: -
Name:Jeri . Email: <jmwalsh@primenet.com>
Location:Huachuca City, AZ USA
Date of First Histo Occurence:December 2000
Affected Eyes:1, Left
Other Stresses at Those Times:I had just had major surgery for a herniated thoracic disc (Oct. 2000).
Laser Surgeries:1. Results:I just had the laser surgery two days ago so it's too soon to tell. But the doc thinks we caught it in time before it affected my central vision.
Sub Macular Surgeries:. Results:
Other Medical Treatment:
Nutritional Supplements:Multiple Vitamens and a Multiple B complex
Vision Products Used:No.
Additional Comments:This problem was so easily missed. I knew something was wrong with my vision in December but just couldn't define what it was. I had a checkup with my regular eye doc and he said it was probably just a dry eye problem. A week ago I noticed that I was seeing 8 helicopters in the air when in reality if I closed one of either eyes it turned into 4 helicopters. Then it dawned on me that something was seriously wrong and it wasn't dry eye. I called them back and they sent me to an eye MD. He saw something but wasn't quite sure so they scheduled me for an angiography about 12 days away. Within 4 days a big gray dot appeared just below my center of vision in the left eye. I got on the phone and got another emergency appt. After looking at it they sent me to a larger town for immediate treatment. If you have been told you have histo scarring in your eyes, always be aware of changes. Once my histo process started progressing it was extremely fast and could have easily taken my vision.
Date: -
Name:Carri . Email: <ck1@superfamily.com>
Location:St. Paul , Minnesota USA
Date of First Histo Occurence:Dec 9, 1999
Affected Eyes:right
Other Stresses at Those Times:None other than the everyday stress of working and raising a family.
Laser Surgeries:6 or 7?. Results:The first several lasers were to stop the hemoraging, but it just kept flaring up. The last in 11/00 was the new PDT treatment, but it didn't work completly either.
Sub Macular Surgeries:none. Results:
Other Medical Treatment:Cortizone shots in the eye and oral predisone.
Nutritional Supplements:multi- vitimins, not for eye
Vision Products Used:alternate glasses and contacts
Additional Comments:I do not have histo, but Punctate Inner Choroidopathy. I have now lost all my central vision in right eye. There is not much left that they can do except pray that it doesn't go to my left eye. I got pregnant 1 month after the diagnosis, and was told that having the baby wouldn't have any effect on my eye. 3 weeks after having the baby I lost the rest of my central vision. I am only 23. If anyone else has had an experience with pregnancy and things of these natures, please email me. I haven't talked to many people with this diease.
Date: -
Name:Mary Ann. Email: <theholmesfamily@sympatico.ca>
Location:Simcoe, Ontario Canada
Date of First Histo Occurence:may `1997 right eye - july 2000 left eye
Affected Eyes:both at different years
Other Stresses at Those Times:My Life was normal at the time, although I put off my first eye visit because I thought the changes of vision to my right eye were due to tiredness and stress. How often do you cover one eye and check the vision in the other? At the time, not at all, until it was too late. I have since lost the central vision in my right eye due to bleeding in the macular followed by lazer to stop the occurance. Today I check my grid daily. My second occurance happened 3 years later and the outcome was better as my central vision was not affected and the fundus was further away from the macular and I only have a blurry/lazer spot off the centre in my left eye. Does anyone know how often this can re-occur? I'm a bookkeeper/accountant by trade and only 38 years old. Should I be considering a different profession?
Laser Surgeries:3. Results:Loss of central vision in right eye and a blur spot (possibly lazer spot) in my left eye off the central point.
Sub Macular Surgeries:. Results:
Other Medical Treatment:
Nutritional Supplements:
Vision Products Used:
Additional Comments:I experience an extreme amount of glare, especially at night. I have to wonder if hte lazer surgerys contributed to this?
Date: -
Name:Vivian Stirpe. Email: <vstirpe@hotmil.com>
Location:Boynton Beach , Florida USA
Date of First Histo Occurence:Jan 10, 2001
Affected Eyes:Left
Other Stresses at Those Times:Yes, loss of mother, 6 weeks of broncitis, loss of a boy friend, etc.
Laser Surgeries:cateract surgery. Results:Eyesight improved a lot but I am seeing beams of light from every light that I look at. The beams start from the sky down to the ground and come off of every single light. So all I see is beams of light. My doctor told me that this is the result of a crease in the lense that he put into my eye because it was pulled too tight. He is making me put eye drops that reverse dialiation in the eye to see if the lense is damaged or if it is part of my eye. I have never had this before the surgery and he tells me that he will not put another lense into the eye. He wants to reverse the Multifocal lense or wait 3 months to see if things change and then do lazer on it. I feel he should replace the lense because if there is a crease in it. then there is something wrong that he caused when he removed the cateract and he should have to replace it. I am in a delema because I will not be able to drive at night at all with this situation. I am 67 years old and feel I am at his mercey. I need another opinion. Maybe someone out there can tell me what to do.
Sub Macular Surgeries:. Results:
Other Medical Treatment:
Nutritional Supplements: I believe in vitamins and try to take them daily. I really do not know if they truely help eyes.
Vision Products Used:
Additional Comments:
Date: -
Name:Vivian Stirpe. Email: <vstirpe@hotmil.com>
Location:Boynton , USA
Date of First Histo Occurence:
Affected Eyes:
Other Stresses at Those Times:
Laser Surgeries:. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:
Nutritional Supplements:
Vision Products Used:
Additional Comments:
Date: -
Name:Vivian Stirpe. Email: <vstirpe@hotmail.com>
Location: USA
Date of First Histo Occurence:
Affected Eyes:
Other Stresses at Those Times:
Laser Surgeries:. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:
Nutritional Supplements:
Vision Products Used:
Additional Comments:
Date: -
Name:Debbie. Email: <dalackey@webtv.net>
Location:Glens Falls, New York USA
Date of First Histo Occurence:Summer of 95
Affected Eyes:both
Other Stresses at Those Times:Anemia, Anorexia and mental stress from and abusive relationship and other daily stresses.
Laser Surgeries:10. Results:20/200 in left
20/300 in right
Sub Macular Surgeries:. Results:
Other Medical Treatment:steroids 3 times
Nutritional Supplements:multivitam with iron
Vision Products Used:cctv, beechers, hand held magnifiers, specialially designed reading glasses.
Additional Comments:
Date: -
Name:Sherrie. Email: <Sherrie091@gateway.net>
Location:marion, indiana USA
Date of First Histo Occurence:07/25/00
Affected Eyes:both
Other Stresses at Those Times:none other than usual every day life...
Laser Surgeries:3. Results:central vision in right eye is gone...now have a rip in left eye.
Sub Macular Surgeries:. Results:
Other Medical Treatment:
Nutritional Supplements:
Vision Products Used:
Additional Comments:
Date: -
Name:Barbara Buck. Email: <beb5068@aol.com>
Location:Kansas City, Kansas USA
Date of First Histo Occurence:Diagnosed 10/87
Affected Eyes:Both
Other Stresses at Those Times:My eyes easily strain, I have to watch what I put on my face around my eye area.
Laser Surgeries:3. Results:I lost the central part of my vision in my right
eye.
Sub Macular Surgeries:. Results:
Other Medical Treatment:Not for my eyes.
Nutritional Supplements:I take a multivitamin, calcium and an aspirin a day.
Vision Products Used:No. It helps though if it is extremely light.
Additional Comments:
Date: -
Name:jesus christ. Email: <bleekcat@yahoo.com>
Location:kansas city kansas, kansas USA
Date of First Histo Occurence:march 1992
Affected Eyes:right
Other Stresses at Those Times:
Laser Surgeries:. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:
Nutritional Supplements:THE LEFT EYE IS EFE TEED WITH THE WHITE DOTE SYNDROME
Vision Products Used:
Additional Comments:CAN ANY ONE TELL ME WHAT THE FUCK IS WHITE DOTE SYNDROME IS ?????????????????????
Date: -
Name:jesus christ. Email: <bleekcat@yahoo.com>
Location:kansas city kansas, kansas USA
Date of First Histo Occurence:march 1992
Affected Eyes:right
Other Stresses at Those Times:
Laser Surgeries:. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:
Nutritional Supplements:
Vision Products Used:
Additional Comments:CAN ANY ONE TELL ME WHAT THE FUCK IS WHITE DOTE SYNDROME IS ?????????????????????
Date: -
Name:TimF. Email: <timfrye@erols.com>
Location:Leesburg, VA USA
Date of First Histo Occurence:12/15/00
Affected Eyes:Left
Other Stresses at Those Times:None
Laser Surgeries:1. Results:Small immediate improvement. Of course I'm just at the beginning.
Sub Macular Surgeries:. Results:
Other Medical Treatment:
Nutritional Supplements:
Vision Products Used:
Additional Comments:Diagnosed with Histoplasmosis in elementary school. Took 28 years to catch up with my eyes!
Date: -
Name:Mary K
Location:Albuquerque, NM USA
Date of First Histo Occurence:Sept, 9 2000
Affected Eyes:right
Other Stresses at Those Times:Severe allergies. I had none prior to Aug. 2000. Sick for 6 weeks-eyes severly affected. Diagnosis when allergies subsided.
Laser Surgeries:two. Results:First: grey area gone-replaced by distorted vision but unable to read. Second done 12/27/00
Sub Macular Surgeries:none. Results:
Other Medical Treatment:
Nutritional Supplements:Multi-vitamins.
Vision Products Used:Not needed yet. Vision not affected in left eye.
Additional Comments:
Date: -
Name:hello seka. Email: <bleekcat@yahoo.com>
Location:topka, kansas USA
Date of First Histo Occurence:dec 26 2000
Affected Eyes:right
Other Stresses at Those Times:
Laser Surgeries:. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:
Nutritional Supplements:
Vision Products Used:
Additional Comments:
Date: -
Name:Barbara Stephens. Email: <blesss2000@yahoo.com>
Location:Bandon, Oregon USA
Date of First Histo Occurence:1979
Affected Eyes:both
Other Stresses at Those Times:The first time I had it flare up I had very bad flu-like symptoms, cough, very hi fever, a scalding feeling all over my body especially between my fingers and toes and on top of my head. I have since experienced areas where my skin feels scalded (about the size of my hand in varios parts of my body lasting two or theree days). I have never been sure there was really a connection except it is so similar to the initial onset of the disease.
Laser Surgeries:One for that, one for an abnormal artery.. Results:I am missing the central vision in my left eye (no surgery on it). I have a gray area on the right side of my right eye vision (I had surgery on that one to stop the blood from leaking and it did).
Sub Macular Surgeries:None. Results:
Other Medical Treatment:None, although I have testing occasionally to see if it is getting worse, which it is not.
Nutritional Supplements:No
Vision Products Used:I have always worn thick glasses (even before the flare-up) but that is all.
Additional Comments:My daughter who is 32 is legally blind, living in Missouri with my three grandchildren. She has the same disease and has had more flare-ups. I worry a little about them livinig back there in the Mississippi River Valley region but I am trusting God to keep them safe. I will send her this site so she can take the survey. Her name is Tanya.
Date: -
Name:Karen Coleman. Email: <kcoleman@island.net>
Location:Victoria, BC Canada
Date of First Histo Occurence:January 1993
Affected Eyes:both
Other Stresses at Those Times:Both occurances happened after giving birth.
Laser Surgeries:2. Results:They only delayed what was to come.
Sub Macular Surgeries:. Results:
Other Medical Treatment:None
Nutritional Supplements:Multi vitamins
Vision Products Used:I have a magni-cam which I needed in the beginning to read everything. Now I conly need it occasionally.
Additional Comments:My right eye was affected first after the birth of my daughter. I was living in the Fraser Valley at the time. After the birth of my son, my left eye was affected and I am now legally blind. My periphial vision has taken over quite well but color, depth and linear reading are still a challenge.
Date: -
Name:Charlotte. Email: <jarodandcharlotte@earthlink.net>
Location:Irving, TX USA
Date of First Histo Occurence:September 2000
Affected Eyes:right
Other Stresses at Those Times:None in particular.
Laser Surgeries:1 and one planned for Tuesday. Results:I did not necessary notice results from my first laser surgury using Visudyne. The doctor was dissapointed because I am a young patient (26) and he had heard good things about using Visudyne for Ocular Histoplasmosis. The past 2 weeks I have noticed my central vision degrading. My second treatment is planned for Tuesday. I wish I would have kept track on an Amsler Grid.
Sub Macular Surgeries:None. Results:
Other Medical Treatment:None
Nutritional Supplements:I take multivitamins occasionally, but nothing particular for the eye. Sounds like it would be a good idea.
Vision Products Used:I wear regular contacts during the day and glasses at night.
Additional Comments:I initially thought that something may be wrong with my contact. If you are having vision problems, go to the doctor immediately. I think I remember when I may have contacted Histoplasmosis. I was 6 and camping in Arkansas and had severe flu symptoms. The Visudyne treatment involves being injected with a substance that is attracted to abnormal blood vessel growth and it sensitive to light. They can zap the blood vessels with a low laser because of the photosensitivity and minimize damage to the eye. I hope all goes well on Tuesday.
Date: -
Name:Carol
Location: Kentucky USA
Date of First Histo Occurence:1984
Affected Eyes:right
Other Stresses at Those Times:nothing abnormal.
Laser Surgeries:. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:Prednisone. I have been on prednisone with every occurance since the first. It always reverses the symptoms back to almost normal after about two weeks. At least so far it does. But it has been several years since I have been able to taper off the Pred completely without having another flareup. It seems that around 15 mgs is as low as I can go now. About a year ago my Dr. became concerned about the long term prednisone and sent me to a rheumatologist for Methotrexate treatments. We tried to reduce the Pred by using the Meth but it diden't seem to work. I have just had the 2nd flareup while tapering Pred with Meth. I was able to get down to 2 mgs Pred the first time but only to 10mgs this time. I think I am finished with that experiment.
Nutritional Supplements:Calcium, folic acid
Vision Products Used:no. Only the glasses I have worn all my life.
Additional Comments:I have had only 20/200 vision in the left eye since childhood. So I very quickly notice a change when there is an histo flareup. And I start on the higher dosage of Pred even before calling the doctor. My Dr. has not considered surgery because the spot is very near the center and he thinks the prognosis for surgery is poor. My side effects from the Pred are limited mostly to bruising and puffiness. I know osteoporsis will happen eventually and am doing calcium and Miacalcin plus periodic bone density tests. So far I am OK there. It is all worrisome and frustrating but I am aware of how lucky I am to have gone on with this so long and have it be no worse than it is. I see fine between flareups and have a normal active life.
Date: -
Name:Ann. Email: <sluggeram@aol.com>
Location:Houston, Texas USA
Date of First Histo Occurence:August 1995
Affected Eyes:Left
Other Stresses at Those Times:Yes, I had just moved from Kansas City to Texas three months before. I was with same employer, but in a new job and new city. Also, had just sold house in KC and moved into an apartment, plus traveling a lot. Plus, I had been diagnosed with diabetes.
Laser Surgeries:One. Results:Successful. I see pretty much normally with both eyes (knock on wood). If I look with left eye only, things appear smaller and farther away, with top left hand corner kind of clipped off. I was very lucky because flare up was near center field of vision. Fortunately, a Dr. Badeen in Kansas City had told me I had histo spots and to call an opthamologist IMMEDIATEDLY if I ever noticed any vision distortion because it was an emergency.
Sub Macular Surgeries:None. Results:
Other Medical Treatment:No
Nutritional Supplements:At time of initial surgery, I bought a number of vitamins designated as being for eyes, most of which contained bilberry.
Vision Products Used:No, most of the time I do not even wear glasses (knock on wood). If I have good light, I can usually read newspaper size print with out glasses. Sometimes I use a magnifying glass for very small print.
Additional Comments:This condition is very frightening. I have been quite lucky so far (knock on wood again), but from what I have read a lot of people have had devasting experiences. However, I understand that the condition can reactivate at any time without warning. And it is truly freightening how fast the abnormal blood vessels can grow. I was shocked when I went to the opthalmologist for my laser surgery when he told me that without treatment I would probably lose most of the center field of vision in my left eye within weeks. Since the condition does not hurt and initially causes only minute changes in vision when you are using both eyes, it is really very insidious since, unless people have been warned by an opthalmologist as I had been, they don't realize what is happening the first time until considerable damage has been caused.
Date: -
Name:Connie S.. Email: <garcon111@aol.com>
Location:Louisville, KY USA
Date of First Histo Occurence:Fall 1999
Affected Eyes:both
Other Stresses at Those Times:Normal job stress.
Laser Surgeries:1. Results:Sept. 2000 - So far, I have re-gained 20/20 vision in the left eye.
Sub Macular Surgeries:1. Results:Dec. 1999 - Vitrectomy - Re-gained some vision for about 6 months, but it is back to legally blind now. (right eye)
Other Medical Treatment:
Nutritional Supplements:Centrum with Lutein
Vision Products Used:No
Additional Comments:It's comforting to see that I am not alone with this frustrating, scary disease. Anyone who would like to chat, or have any suggestions concerning this disease, please feel free to email me at garcon111@aol.com. Also, has anyone been diagnosed with Pulmonary Histoplasmosis too???
Date: -
Name:Glenda Alphin. Email: <glalphin@yahoo.com>
Location:Columbus, OH USA
Date of First Histo Occurence:Spring 96, Fall 2000
Affected Eyes:Right
Other Stresses at Those Times:No other medical problems. I have just been rediagnosed with what seems to be a reoccurence, and am to see a retinal specialist to confirm the severity. This visit will also determine what procedure would be best to use, as the scar/pigmentation from the previous surgery is 1 mm away from my central vision, and affects almost the entire right 1/2 of my retina. My dr. is hoping to utilize the least invasive procedure in order to save as much vision as possible.
Laser Surgeries:1 so far!. Results:The surgery was a success at that time, and my vision had adjusted until this Fall. (I have a scar from the previous surgery, in the lower right part of my retina.) There is now severe pigmentation around it, and there appears to be an area of new activity.
Sub Macular Surgeries:. Results:
Other Medical Treatment:No.
Nutritional Supplements:Various multivitamins and supplements.
Vision Products Used:Glasses (since I was 9, so this is not due to the hysto or surgery).
Additional Comments:I wish there was something that could be done to stop reoccurences! I have been told that after another procedure, it could continue to reoccur for the remainder of my life span. Evidently, my immune system overreacts to the hysto virus, which is why I have developed the problem that I have.
Date: -
Name:david agnew. Email: <bleekcat@yahoo.com>
Location:kansas city m, missouri USA
Date of First Histo Occurence:2000 oct 16
Affected Eyes:right
Other Stresses at Those Times:I have a new thing in my left eye the doctor says that i have white dote syndrome. he is going to have me come back on october23 2000 to look at nty left eye he does not think that the left eye is infected eith histo like the r right eye is my right eye is getting better but i can not have lazer surgery because it is int the middle and to close to the optic nerve i hope the left eye is not infected with histo but the doctor says that he can see white dots in it. but he said it well go a way in a mounth. if any one can realate to that give me a e-mail my e- mail address is bleekcat@yahoo.com
my name is david good luck !!!!!!!!!
Laser Surgeries:none. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:asthma
Nutritional Supplements:vitam b
Vision Products Used:commputers
Additional Comments:
Date: -
Name:Angie . Email: <adw52468@cs.com>
Location:Wayne, WV USA
Date of First Histo Occurence:1/89 L eye 4/95 R eye
Affected Eyes:both
Other Stresses at Those Times:seizures, erythema nodosum
Laser Surgeries:multiple. Results:they usually stop flare ups but don't seen to halt reoccurences
Sub Macular Surgeries:. Results:
Other Medical Treatment:
Nutritional Supplements:none
Vision Products Used:some- magnifiers etc
Additional Comments:My biggest suggestion to anyone who suffers with this problem is just to keep on praying and trusting in the Lord. I have a daily struggle with being legally blind. I have a supportive family, which helps a lot, but with out the Lord I probably would have never made it thus far. My left eye is the one I cann my bad eye- I have had so many laser tx in that eye that I have no central vision left and I nad two scars now and only a small amount of light shows through the two scars. My right eye has had only two flare ups and I have a black blotch to look at in that eye too, however it takes time and will power to adjust and keep on living. Driving is the main thing I miss the most. Only someone with this problem would understand. My only big suggestion is take care of the sight you have and visit your retina specialist as often as possible.
Date: -
Name:Harriet. Email: <mrthornton@mindspring.com>
Location:Notasulga, Alabama `
Date of First Histo Occurence:1993
Affected Eyes:Both
Other Stresses at Those Times:Going through a divorce
Laser Surgeries:None. Results:
Sub Macular Surgeries:None. Results:
Other Medical Treatment:None
Nutritional Supplements:no
Vision Products Used:Wears glasses
Additional Comments:Totaly blind in one eye
Date: -
Name:Eileen. Email: <harp_girl@hotmail.com>
Location: PA USA
Date of First Histo Occurence:3/9/1995
Affected Eyes:both
Other Stresses at Those Times:
Laser Surgeries:2. Results:right eye - laser unsuccessful; left eye - laser treatment effective
Sub Macular Surgeries:none. Results:n/a
Other Medical Treatment:prednisone tablets - unsuccessful
Nutritional Supplements:multi vitamins
Vision Products Used:no
Additional Comments:none
Date: -
Name:Lynda. Email: <corndog28@webtv.net>
Location: Ohio USA
Date of First Histo Occurence:05/99
Affected Eyes:both
Other Stresses at Those Times:
Laser Surgeries:1. Results:right eye lasered 10/00 , so far good
Sub Macular Surgeries:none. Results:
Other Medical Treatment:in 05/99 had it to affect my right eye in the center. I was medicated with steroids and cyclosporin.In 05/00 the histo was inactive in the eye. I went off the medicine and in 08/00 my left eye developed a spot that had to be lasered. I am back on the steroids and cyclosporin again.
Nutritional Supplements:no, but gathering information and expecting too
Vision Products Used:no. I function by using my left eye center sight.
Additional Comments:Please write me if you have any suggestions on medicines, surgery, and knowledgeable doctors that deal with this. Thankyou.
Date: -
Name:Dick. Email: <motormiller@juno.com>
Location:Zavalla, Texas USA
Date of First Histo Occurence:6/1997
Affected Eyes:Both, left eye worse
Other Stresses at Those Times:None
Laser Surgeries:None. Results:
Sub Macular Surgeries:None. Results:
Other Medical Treatment:
Nutritional Supplements:
Vision Products Used:Glasses
Additional Comments:I have Histo scars in both eyes, but no other symptoms. I was born and raised in Northern Ohio.
Date: -
Name:Cecelia. Email: <Celie10@aol.com>
Location: IN USA
Date of First Histo Occurence:May 2000
Affected Eyes:left
Other Stresses at Those Times:recovering from a broken back and life in general
Laser Surgeries:1. Results:seems to have slowed the movement and I am starting to pick up some light in various spots in the black/dead spot
Sub Macular Surgeries:. Results:
Other Medical Treatment:in Sept 2000, I started having double vision, so now I have one of the lenses in my glasses with prizm in it, it does help, the double vision is less severe.
Nutritional Supplements:
Vision Products Used:
Additional Comments:at the first dr. visit, i thought he told me that it only lasted a few months.. i'm being to realize that this is a lifetime thing
Date: -
Name:Storm Mayo. Email: <Stormmy63@aol.com>
Location:St. Louis, MO, USA USA
Date of First Histo Occurence:October 1995
Affected Eyes:Both eyes
Other Stresses at Those Times:Daily Life.
Laser Surgeries:2 in 1995, and 3 in the last 5 months. Results:Left eye legally blind. 20/200. Three laser surgeries in the right eye. 2 surgeries, no help. Last PDT Laser surgerie, has been very helpful. (New FDA approved for macular Degeneration) This seems to have given me back some of my sight. Will have again. Not all abnormal blood vesels are gone.
Sub Macular Surgeries:None. Results:
Other Medical Treatment:Have had treatment with 60 mgs a day of prednisone. It helped two years ago. Has not helped over the last six months. It has given me more health problems. It has made my life miserable.
Nutritional Supplements:No
Vision Products Used:Just a magnifying glass to read.
Additional Comments:Having this disease has made my life miserable. Having your central vision affected is a terrifying thing to have happen. The thought of not having it to drive, read, etc. effects you and your family. It has been really helpful to find that I am not alone. I was amazed at how many other people suffer from this strange fungus.
Date: -
Name:Lena Partin. Email: <lpartin@cc.cumber.edu>
Location:Williamsburg, KY USA
Date of First Histo Occurence:June 1990
Affected Eyes:both
Other Stresses at Those Times:I really don't know when I got occular histoplasmosis, but when it was diagnosed.
I had a fully detached retina in my right eye. I was then told it had torn at
all the histo scars and was patched back together and a scleral buckle put on
to hold the retina in place. I also had laser surgery in mid 1992 on the left
eye for active histo. Then in August and September of 1998 I had two separate
tears and detachements again in the left eye. I have a lot of floaters, I have
sever myopia, double vision, cataracts on both eyes. In 1991 and 1992 I had
carpal tunnel surgery on the right hand and then the left one.
Laser Surgeries:1992. Results:It has been holding and stable since then.
Sub Macular Surgeries:. Results:
Other Medical Treatment:
Nutritional Supplements:I take Centrum Silver with Luteen now, also chondrotin/glucosamine
Vision Products Used:No
Additional Comments:I am still working and active. I get scared at times, but holding to God to help me thru.
Date: -
Name:Amy. Email: <RollisA@state.mi.us>
Location:Okemos, MI USA
Date of First Histo Occurence:8/96
Affected Eyes:both
Other Stresses at Those Times:just usual daily stress
Laser Surgeries:2. Results:Photocoagulation in right eye 8/96, successful stoppage of leakage with resulting scar. No recurrence in right eye to date. Left eye 6/00, Photodynamic laser for CNV membrane in the central vision with no effect. Vision had gone from 20/40 to 20/400.
Sub Macular Surgeries:1. Results:Left eye vitrectomy and removal of membrane covering fovea 8/23/00. Still recovering post-op, so results are unknown at this time, but I'm hopeful.
Other Medical Treatment:n/a
Nutritional Supplements:1000 mg Vitamin C and multi vitamin
Vision Products Used:Rented special-angle chair from McFee in Battle Creek MI that relieved the short term pain in neck and shoulders from the required special post-op positioning. Excellent company! Also, magnifying glasses and contacts, checking Amsler grids all the time.
Additional Comments:My heart goes out to all of you after reading your stories. This disease is incredibly frustrating, as it is not curable, only treatable after vision loss has occurred. The internet has a lot of information to offer now, so research all you can. Any vision changes, call your ophthalmologist immediately. I was blessed with excellent doctors. Trust God to be with you in your struggles, know you are not alone out there.
Date: -
Name:Lori. Email: <lordanw@aol.com>
Location:Muskegon, MI USA
Date of First Histo Occurence:May 1994
Affected Eyes:Both
Other Stresses at Those Times:
Laser Surgeries:2 in left/1in right. Results:Not good. The longest that it seemed to slow anything down was about 6 months - the shortest was about 2 weeks. For some reason this disease is more aggressive in some than others - my doc told me it's quite aggressive in my eyes.
Sub Macular Surgeries:2 in left/1 in right. Results:Good at first. The second surgery took away the central vision in my left eye. But that was OK because I still had my right eye to compensate...UNTIL June of this year. So far the surgery has veen successful in my right eye (it's only been 6 weeks), but they think there may be a leak in the macula region already. It's so frustrating!!
Other Medical Treatment:
Nutritional Supplements:Just the common stuff - multi-vitamins, etc. I didn't know there was anything that could possible help.
Vision Products Used:Not yet, but reading is quite difficult.
Additional Comments:Thanks to all who have posted their info! I found this site last night and until then truly thought I was all alone. I am trying to keep a positive attitude about all of this, but it just seems that there is no end. I am nervous about opening my eyes every morning, fearing that there will be a new spot to deal with! Your comments have helped me realize that I WILL always deal with this disease, which is a good revelation for me. Thank you!
Date: -
Name:Jane Bergman. Email: <bergmanjane@hotmail.com>
Location:Middleport, Ohio USA
Date of First Histo Occurence:1991
Affected Eyes:right
Other Stresses at Those Times:I was diagnosed with rheumatoid arthritis around the same time.
Laser Surgeries:five. Results:legally blind in right eye. Macular degeneration by scar tissue resulting from five lazer surgeries.vi
Sub Macular Surgeries:. Results:
Other Medical Treatment:
Nutritional Supplements:vitamins daily, calcium supplement, and a monthly injection of Vitamin B12.
Vision Products Used:no
Additional Comments:I have read another comment on the possible connection between rheumatoid arthritis and hystoplasmosis. Is this a possibility?
Date: -
Name:Flo Calember. Email: <fistler@sedona.net>
Location:Phoenix, AZ USA
Date of First Histo Occurence:1966
Affected Eyes:
Other Stresses at Those Times:severe chills at time; after 6 wks at Mayo in MN was found to have histo in bon es-still at this time have chills and cannot get warm, even living in AZ now
Laser Surgeries:. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:
Nutritional Supplements:
Vision Products Used:
Additional Comments:
Date: -
Name:Helen Fistler. Email: <fistler@sedona.net>
Location: USA
Date of First Histo Occurence:1985
Affected Eyes:r
Other Stresses at Those Times:marriage problems
Laser Surgeries:. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:given prednisone
Nutritional Supplements:
Vision Products Used:
Additional Comments:
Date: -
Name:Lana. Email: <lturner@cadvision.com>
Location:Calgary, Alberta Canada
Date of First Histo Occurence:July 15, 2000
Affected Eyes:left
Other Stresses at Those Times:On Zyban for quitting smoking
Laser Surgeries:None yet. Results:
Sub Macular Surgeries:None yet. Results:
Other Medical Treatment:
Nutritional Supplements:Antioxidants, Vitamin E, Zinc, Coenzyme Q10, Ginkgo Biloba, Noni juice, Estrified Vitamin C.
Vision Products Used:No
Additional Comments:Just diagnosed a week and a half ago, nothing done yet other than my flouro angiography
Date: -
Name:PageCrafters.net
Location:
Date of First Histo Occurence:
Affected Eyes:
Other Stresses at Those Times:
Laser Surgeries:. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:
Nutritional Supplements:
Vision Products Used:
Additional Comments:Great Site!
Date: -
Name:Barbara. Email: <patioqueen@aol.com>
Location:Port St. Lucie, Fl. USA
Date of First Histo Occurence:Sept. 1999
Affected Eyes:both
Other Stresses at Those Times:nothing out of the ordinary life stresses
Laser Surgeries:none. Results:
Sub Macular Surgeries:one. Results:Feb. 2000, eyesight was 20/400. Cnv in central vision. Surgery a success, eyesight (corrected) 20/20.
Other Medical Treatment:no
Nutritional Supplements:lutein, billbery, E, C, multi vits. Grape juice, green tea, strawberrys
Vision Products Used:no
Additional Comments:
Date: -
Name:Karen. Email: <happyones3@excite.com>
Location:Knoxville, Tennessee USA
Date of First Histo Occurence:Fall 1985
Affected Eyes:left
Other Stresses at Those Times:There was only the normal stress of job and family.
Laser Surgeries:1. Results:Improved vision in left eye. There was a blind spot but I could view things at an angle and bypass it.
Sub Macular Surgeries:None yet. I will meet with an opthamologist this week to discuss it for my new flare up which is beyond prednizone and too broad and central in my macula for traditional lazer,. Results:????
Other Medical Treatment:I have generally had good results with steroids but only when leakage was minimal.
Nutritional Supplements:Only multivitamins and not at the urging of a physician.
Vision Products Used:I have a contact lens -3.5 for my unaffected eye. My glasses give me better vision for some reason although the prescription is the same. My affected eye had 20/20 prior to histo.
Additional Comments:I have been told that photodynamic therapy could help but is unapproved by the FDA for ocular histoplasmosis. Submacular surgery, as I understand, is also not FDA approved. Both will be expensive if insurance refuses to pay. I wish I knew which to choose!
Date: -
Name:Ann. Email: <akim@columbus.rr.com>
Location:Hilliard, Ohio USA
Date of First Histo Occurence:Sept. 1989
Affected Eyes:both
Other Stresses at Those Times:No medical conditons at teh times when it was active
Laser Surgeries:4. Results:good result with right eye. Had 3 lasers on left eye but the damage was too severe lost the sight in left eye by 1997. Had one laser surgery in right eye which helped that eye and have not had an occurence since 1997, now trying to save the right eye.
Sub Macular Surgeries:none- yet due 08/16/00. Results:
Other Medical Treatment:No other treatments have been done aside from the laser.
Nutritional Supplements:no
Vision Products Used:Not at this time, the occurence in right eye just started about a month ago. I was doing fairly well with my one good eye until last month.
Additional Comments:My biggest comment on this disease is, If it is so common whi is it that people don't know about it? I think people nedd to be educated on this disease especially if they live in high risk areas.
Date: -
Name:Conjo. Email: <raycrow@peoplepc.com>
Location: Ky. USA
Date of First Histo Occurence:Aug.1994-Nov.1994
Affected Eyes:left
Other Stresses at Those Times:Stressful childhood and later in life,"job". Hypertension developed after OH leaked;taking the macula and all but a small slit of light in the upper part of my eye. What I see now is distorted. Some days I seem to see better than others. My brain has not adjusted to my new vison and at this date probably won't.
Laser Surgeries:2. Results:OH first developed as a black spot in the right side of my left eye. Laser was performed to stop the bleeding. The laser didn't stop the bleeding. OH took the remaining vison leaving my vison distorted. DR.S Did the dye test's several times but the retina and macular was already taken.
Sub Macular Surgeries:. Results:
Other Medical Treatment:Now I'm being treated for Hypothroidism, T.I.A.,and Depression.
Nutritional Supplements:1000iu vit.E, calcium & vit.D. (2000)
Vision Products Used:Yes. I use a big-eye magnifier along with magnifying glasses to read. I use another pair of magnifying glasses to use my PC. Also a Vis-tech to cary with me.
Additional Comments:I am new at using a PC. But I would like to chat with others about this OH. OH has changed my life and now I suffer with depression and I am more comfortable at home than any where else. I started having migraines in 1996. Does anyone else suffer from Migraines linked to OH.? or Deppresion? You can contact me at the above E-mail if you would like to chat.
Date: -
Name:Jana Sands. Email: <jana_sands@yahoo.com>
Location: USA
Date of First Histo Occurence:2/14/73
Affected Eyes:both
Other Stresses at Those Times:none
Laser Surgeries:1 - left eye. Results:Macula was already distroyed; surgery just sealed the leaks around edges
Sub Macular Surgeries:. Results:
Other Medical Treatment:massive oral prednisone; decadron injections in rt. eye
Nutritional Supplements:no
Vision Products Used:no
Additional Comments:
Date: -
Name:David-Frédérick Lutzy. Email: <zimboumba2mindless.com>
Location:Laval, Québec Canada
Date of First Histo Occurence:???
Affected Eyes:left
Other Stresses at Those Times:
Laser Surgeries:. Results:
Sub Macular Surgeries:2. Results:made it worst ... both times ...
Other Medical Treatment:trying out shark cartilage ...
Nutritional Supplements:shark cartilage
Vision Products Used:
Additional Comments:
Date: -
Name:Mindy Salyer. Email: <asalyer@utk.edu>
Location:Knoxville, Tn USA
Date of First Histo Occurence:Fall of 96
Affected Eyes:Both
Other Stresses at Those Times:
Laser Surgeries:4. Results:To date the progress has been slowed. However as we all know something could change at any minute.
Sub Macular Surgeries:1. Results:
Other Medical Treatment:
Nutritional Supplements:
Vision Products Used:
Additional Comments:
Date: -
Name:Keith S.. Email: <keith@bway.net>
Location:New York, New York USA
Date of First Histo Occurence:Nov 1997
Affected Eyes:Right
Other Stresses at Those Times:Fairly severe personal and work stress in the previous two months.
Laser Surgeries:1. Results:I has submacular surgery as well as laser surgery.
Please see my story at my webpage
http://www.bway.net/~keith
for more details
Sub Macular Surgeries:1. Results:Improvement
Other Medical Treatment:other than massive followup, no more treatments
Nutritional Supplements:General multivitamins
Vision Products Used:Not needed
Additional Comments:again, see my webpage at http://www.bway.net/~keith for more details, or contact me at keith@bway.net with specific questions
Date: -
Name:Dawn Gillespie. Email: <moonpie@citynet.net>
Location:Point Pleasant, WV USA
Date of First Histo Occurence:1996
Affected Eyes:both
Other Stresses at Those Times:No stress. Didn't know there was a problem. Eye doctor found scars.
Laser Surgeries:. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:
Nutritional Supplements:no
Vision Products Used:Glasses to read and for distance
Additional Comments:My perifel vision is not good
Date: -
Name:Deborah Rooney. Email: <dsrsova@aol.com>
Location:Virginia Beach, Virginia USA
Date of First Histo Occurence:September 1997
Affected Eyes:right
Other Stresses at Those Times:Suffered a concusion 2 days prior to the onset. Family doctor orginally said it was perhaps a traumatized optic nerve. Later was sent to an opthamologist who diagnosed a swollen retina (Perhaps by being beaten by someone, he suggested). After 12 weeks of no improvement went back and was diagnosed with a cyst on my retina and was sent to a retina specialist who then diagnosed Histo.
Laser Surgeries:none. Results:Too advanced after 3 months of misdiagnosis for laser. I was told that a laser would permanently limit vision where as surgery could possible improve it.
Sub Macular Surgeries:one. Results:Although the bleeding was stopped there was no improvement in my vision. The doctor has promised only a 40% chance of getting better, 50% no change and 10% getting worse. I chose the surgery since there did not appear to any other better options.
Other Medical Treatment:My retina specialist is reccomending no more surgery at this time. I am just at the threshold of being able to use some low visin equipment should my other eye become infected. He does not want to risk making things worse. He is recommending a transplant which he hopes will come available in the next 5-10 years.
Nutritional Supplements:none
Vision Products Used:No, regular reading glasses for left eye. No central vision in right and 20/250 nononcorrectable in right.
Additional Comments:
Date: -
Name:carol bishop. Email: <carol.bishop@morgankeegan.com>
Location:memphis, tn USA
Date of First Histo Occurence:1091
Affected Eyes:both
Other Stresses at Those Times:
Laser Surgeries:three. Results:I had one of the first surgeries in 1982. Result was createed a donut around central vision of blindess in one eye. Both center visons gone
Sub Macular Surgeries:would not perform due to loacation of disease. Results:
Other Medical Treatment: A couple of rounds of steroids and nalfon
Nutritional Supplements: vitamin E and C
Vision Products Used:Yes the Power 12 glasses. Have purchase binocular long vision and readin glasses and Camera with screen
Additional Comments:Is there any success or successful trials for people with histoplasmosis in the center vision
Date: -
Name:carol bishop
Location: USA
Date of First Histo Occurence:
Affected Eyes:
Other Stresses at Those Times:
Laser Surgeries:. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:
Nutritional Supplements:
Vision Products Used:
Additional Comments:
Date: -
Name:Brett. Email: <bgutridge@voyager.net>
Location:mt. perry, ohio USA
Date of First Histo Occurence:6/15/00
Affected Eyes:Both, right eye the worst
Other Stresses at Those Times:none
Laser Surgeries:0 . Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:Waiting to go back for the pictures that was taken
Nutritional Supplements:none
Vision Products Used:none
Additional Comments:My father has this, is it carry from one person to another?
Date: -
Name:Bev. Email: <dl79@primary.net>
Location:St. Louis, MO USA
Date of First Histo Occurence:1986
Affected Eyes:Lost central vision in left eye in 1986, right eye became involved in 1993
Other Stresses at Those Times:No medical problems. Life became very stressful in 1993. Medical problems with one of my kids. Things were very extreme at times. Problems lasted about 4 years. Had numerous leaks during that time.
Laser Surgeries:approx. 6 in right eye. Results:
Sub Macular Surgeries:1. Results:Had surgery April 17, 2000. It was very sucessful. tested 20/35 after 1 week, 20/25 after 3 weeks & 20/20 after 6 weeks.
Other Medical Treatment:no
Nutritional Supplements:no
Vision Products Used:reading glasses
Additional Comments:
Date: -
Name:Renee. Email: <Boobula05@aol.com>
Location:Muncie,Indiana, usa USA
Date of First Histo Occurence:spring1988
Affected Eyes:both eyes
Other Stresses at Those Times:was living at home with parents and just had a baby in the fall. Wasnt married to the Father-teenage Mom. Definate stress.
Laser Surgeries:3. Results:started out with 20/120 in left eye.had a Rentinal tear that had to be fixed was given predinsone for inflamation,to be tapered off.Ended up with 20/40 with glasses.Now I have a blob in my Central line of vision in the left eye.Still have alot of floaters in both eyes.Bothers me on sunny days. They get in the way.At night I have some problems seeing to drive.Had a hard time passing the vision test for my drivers licesence.Use amsler grid to check progress of any ruptures.Just have to deal with it on a day to day basis.
Sub Macular Surgeries:. Results:ended up with Macular Degeration due to all of this.
Other Medical Treatment:no. Its dorment right now. Doctor says that it may never affect me again,or it could flair up at anytime.Wait and see game.
Nutritional Supplements:no,but would like to find out if theres anything that would help.
Vision Products Used:no. Just my glasses.Most of my problem is in the left eye. Right eye does all the work for me.
Additional Comments:I would like to hear from others about there progress with this histoplasmosis.I live in a town thats pigion infested.Please contact me at my email.
Date: -
Name:Jerri Francis. Email: <wf3166@prodigy.net>
Location:Little Rock, Arkansas USA
Date of First Histo Occurence:1987-diagnosed as macular cysts.
Affected Eyes:both-disagnosed as histoplasmos several years later
Other Stresses at Those Times:high blood pressure--ruptured back disk---a lot of stress due to children's marriage breakups and custody problems
Laser Surgeries:12 or more. Results:continued leaking and damage --right eye had lazer surgery to stop leakage resulting in entire center vision loss. Right eye is continuing to leak. Doctors do not recommend additional surgery on right eye at this time. New lazer surgery is awaiting approval for macular degeneration. If this surgery is approved for histoplasmosis, my doctors are hopeful that it might help me.
Sub Macular Surgeries:2 experimental surgeries. Results:Dr. Matthew Thomas performed a membrane removal on left eye in July 1998. There was more damage than he had expected. Three days later he detached the macula and retina and tried to reatach to move center of vision. It was not moved enough and the desired result was not obtained. A small amount of the center area was restored and vision is probably better than it was before the surgery. The entire peripheral
of left eye was lost due to nerve damage during surgery. Left eye has remained stable since surgery.
Other Medical Treatment:cateract formed after last surgery on left eye was removed in 1999. Cateract has formed in right eye and being watched by doctors. Eye pressure slightly on high side, not on medication for pressure at present time.
Nutritional Supplements:Regular vitamins
Vision Products Used:Magnifying glasses----large print on computer--I have been able to adapt much better that the doctors had expected.
Additional Comments:
Date: -
Date of First Histo Occurence:
Affected Eyes:
Other Stresses at Those Times:
Laser Surgeries:. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:
Nutritional Supplements:
Vision Products Used:
Additional Comments:
Date: -
Name:Genie Sadler. Email: <genie@svs.net>
Location:Shelbyville, Indiana USA
Date of First Histo Occurence:?jan-march 2000
Affected Eyes:
Other Stresses at Those Times:esophogeal erosion and mass in soft tissue
Laser Surgeries:. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:sporanox-liquid and capsule,antibiotic(augmentin 875 mg)
Nutritional Supplements:no-only vitamins that would come from supplement drinks(slimfast)-liquid diet only
Vision Products Used:eyes were not affected
Additional Comments:The Sporanox is very expensive. Jansen the mfg has a program to help you get it. This may come in handy to anyone else with histoplasmosis.
Date: -
Name:Dea Palar. Email: <dpstud10@hotmail.com>
Location: IA USA
Date of First Histo Occurence:nothing specific
Affected Eyes:right
Other Stresses at Those Times:nope
Laser Surgeries:. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:nope`
Nutritional Supplements:no
Vision Products Used:no
Additional Comments:no
Date: -
Name:david agnew. Email: <bleekcat@yahoo.com>
Location:kcmo, mo USA
Date of First Histo Occurence:1992
Affected Eyes:right
Other Stresses at Those Times:
Laser Surgeries:. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:
Nutritional Supplements:
Vision Products Used:
Additional Comments:
Date: -
Name:M. Grable. Email: <madger5@aol.com>
Location: USA
Date of First Histo Occurence:1968
Affected Eyes:Both
Other Stresses at Those Times:None
Laser Surgeries:. Results:Advised that lesions were too close to optic nerve.
Sub Macular Surgeries:. Results:Never recommended
Other Medical Treatment:Initially diagnosed at Mass. Eye and Ear and treated there and at Johns Hopkins with large, then tapering, doses of prednisone or Medrol. Flare-ups diminished in frequency over the years and steroid therapy not used after 1978, when it was found that lesions cleared up on their own as quickly as with steroids.
Nutritional Supplements:None related to histo or OPH.
Vision Products Used:Occasionally use magnifying glass for very small print.
Additional Comments:For the past two months, I've been treated with prednisone for breathing problems related to emphysema. Shortly after this began, I had a severe flare-up with essentially no central vision in left eye. Saw ophthalmolgist on 6/5/00 and was diagnosed with subretinal neovascularization secondary to histo. Referred to eye surgeon.
Date: -
Name:Benny. Email: <forceof7@aol.com>
Location:Western N Y, NY USA
Date of First Histo Occurence:12/25/96
Affected Eyes:Both
Other Stresses at Those Times:None known
Laser Surgeries:6. Results:
Sub Macular Surgeries:1. Results:
Other Medical Treatment:Prednisone 10 mg daily
Nutritional Supplements:multi-vitamins only
Vision Products Used:Nothing specific...just modifications re: lighting,sunglasses, print size.color etc.
Additional Comments:first noted "blind spot" right eye while driving. to ophtholmogolist asap with referral to retinal spec/. thought to be viral infection. when it progressed to left eye (within several weeks) placed on anti-virals and prednisone. withn short period of time CNV of right with (2) laser tx one of which resulted in total destruction of right central vision. then (4) CNV of left that were tx with laser until no laser more could be done so had sub mac left about (2) years ago with very good resutls. continues "flare-ups" that have thus far been kept in fairly good check with use of daily low dose prednisone tx
Date: -
Name:Tom C.. Email: <tlcolesr@webtv.net>
Location:Ft. Pierce, Florida USA
Date of First Histo Occurence:1982
Affected Eyes:both
Other Stresses at Those Times:None...I had done some heavy lifting and popped a blood vessel in the eye shortly before, but I had done that before.
Laser Surgeries:1. Results:I was in Ft. Wayne. Ind...left eye only... went from 20/300 to 20/30 for 6 weeks after surgery then dropped back to 20/300...the right eye only had perifreal(sp) scarring in '82 dr said may never or might tommarrow. Also left eye could come or go no guarantees. Last fall, '99, started having blurry vision. Went dr. here in Ft.Pierce, Fl. got bunches of run around till they finally found a retina specialist. Ran bunch of test snt me home said wait and see what happens. Had me return every 6wks with same attitude, wait and see, Eye seems to have cleared up by itself, though I do have a gray area right where I want to focus to read Sometimes more noticeable than others.
Sub Macular Surgeries:. Results:
Other Medical Treatment:When 1st diagnosed in '82 Dr. gave me extremely high doses of steriods building to a peak then tapering off. Started pills on Monday [20/30] went back Friday [20/300] to Dr. had surgery Saturday. Six weeks later, on Monday [20/30] two days later on Wednesday [20/300] started hemmoraging again, too close the optic nerve to do any more laser.
Nutritional Supplements:no
Vision Products Used:Reading glasses only, because my arms have gotten too short for me to read up close.
Additional Comments:do not have any headaches. was having them but found arthritis in vertebrea in neck. anti-inflamitory pills and no more headaches.
Date: -
Name:Debi Mowers-Brown. Email: <DKMem@AOL>
Location:Burnsville, MN USA
Date of First Histo Occurence:5-11-2000
Affected Eyes:Left
Other Stresses at Those Times:I was out in the rain gardening - Having a swell time. Waiting for my formal job offer after agreeing verbally. Life was good-stressful.
Laser Surgeries:1 . Results:It's only been four days. Can't complain OR jump for joy. It just IS.
Sub Macular Surgeries:. Results:
Other Medical Treatment:No
Nutritional Supplements:Not yet. I'm still busy reading what You Guys are doing...
Vision Products Used:No
Additional Comments:I've got five million questions. Like: My eyes hurt looking at this computer. Does anybody have lighting suggestions? For my whole life? I'm going to be staring at a computer for 8 Plus hours a day. Is that good? Are there any studies on computer screens and Histo/POHS? I have some bad habits that I need to rethink...I smoke...that's bad any old day. I drink copious amounts of coffee...that's not so good either. But is it REALLY REALLY bad in relation to this diagnosis? And is this the wrong place to be asking these questions....Probably. But there you go.
Date: -
Name:Max L,Oyler. Email: <maxtentee@aol.com>
Location:Duluth , ga USA
Date of First Histo Occurence:5/15/00
Affected Eyes:right
Other Stresses at Those Times:None out of ordinary
Laser Surgeries:1. Results:ok so far
Sub Macular Surgeries:. Results:
Other Medical Treatment:
Nutritional Supplements:
Vision Products Used:
Additional Comments:
Date: -
Name:Sarah. Email: <sarahlynn91@hotmail.com>
Location:Bannister, MI USA
Date of First Histo Occurence:1992?
Affected Eyes:right one first
Other Stresses at Those Times:I had just gotten over the flu. I worked on computers every day.
Laser Surgeries:1 in left eye. Results:I was considered legally blind in both eyes for a period of 3 years. After about 3 years, I noticed that I could see a little bit better. I went to see if I could pass the test to get my driver's license back, and I DID! My doctor said he did not know why I could see again in my left eye. When I had the surgery, I was told I would never see any better and maybe a little bit worse than I was when I had the surgery.
Sub Macular Surgeries:. Results:
Other Medical Treatment:
Nutritional Supplements:My doctor told me to take Occuvite or an equivalent. I also take Calcium, C, E, B vitamins and Lysine
Vision Products Used:My Commission for the Blind was a tremendous help, once I was able to find them. I called a local clinic and asked if they knew of any one who could help me. I was going nuts, having to quit my job, quit driving, quit reading. She told me of a blind lady in our town. I called her & went to speak to her. She put me in touch with the Commission for the Blind. I was sent to "blind school". I then went to college for 3 years while I was legally blind. At this time, I have a 21 inch monitor that I used on my job. I was able to go back to work after 3 years.
Additional Comments:I am taking my last class at college now, & I will graduate in June. I still have some problems I need to compensate for. My depth perception is bad, my colors are not true. I DO NOT drive at night. After reading just a few of these entries, I realize just how thankful and blessed I have been in regaining the vision I have. I see that quite a few people have had relapsed. I always knew what a miralce it was that I could see again, but today I understand even more just how blessed I have been. I am still legally blind in my right eye. My left eye is now seeing 20/25. Thank God!
Date: -
Name:Sarah. Email: <sarahlynn91@hotmail.com>
Location:Bannister, MI USA
Date of First Histo Occurence:1992?
Affected Eyes:right one first
Other Stresses at Those Times:I had just gotten over the flu. I worked on computers every day.
Laser Surgeries:1 in left eye. Results:I was considered legally blind in both eyes for a period of 3 years. After about 3 years, I noticed that I could see a little bit better. I went to see if I could pass the test to get my driver's license back, and I DID! My doctor said he did not know why I could see again in my left eye. When I had the surgery, I was told I would never see any better and maybe a little bit worse than I was when I had the surgery.
Sub Macular Surgeries:. Results:
Other Medical Treatment:
Nutritional Supplements:My doctor told me to take Occuvite or an equivalent. I also take Calcium, C, E, B vitamins and Lysine
Vision Products Used:My Commission for the Blind was a tremendous help, once I was able to find them. I called a local clinic and asked if they knew of any one who could help me. I was going nuts, having to quit my job, quit driving, quit reading. She told me of a blind lady in our town. I called her & went to speak to her. She put me in touch with the Commission for the Blind. I was sent to "blind school". I then went to college for 3 years while I was legally blind. At this time, I have a 21 inch monitor that I used on my job. I was able to go back to work after 3 years.
Additional Comments:I am taking my last class at college now. I still have some problems I need to compensate for. My depth perception is bad, my colors are not true. I DO NOT drive at night. After reading just a few of these entries, I realize just how thankful and blessed I have been in regaining the vision I have. I see that quite a few people have had relapes. I always knew what a miralce it was that I could see again, but today I understand even more just how blessed I have been.
Date: -
Name:carol williams. Email: <will2567@hotmail>
Location:Uniontown, pa USA
Date of First Histo Occurence:may 1998
Affected Eyes:both but only the left has been active
Other Stresses at Those Times:emotional stress due to being on worker comp after back surgery
Laser Surgeries:1. Results:dried the bleeding in left eye but became active again six months later
Sub Macular Surgeries:1. Results:removed jelly from left eye and cut away at the affected area. has been okay since then
Other Medical Treatment:none. I lost my health benefits in april 99 and haven't been examined since
Nutritional Supplements:no
Vision Products Used:no. I was told by my local chapter of the blind association that even though i have lost all central vision in left eye, i am not considered "low vision"
Additional Comments:there needs to be more information about treatment, long term effects of living without central vision (ie: what to expect after treatment, after central vision loss. I am unable to do fine tasks like threading a needle, also my depth perception is off) it would have been helpful to have literature readily available to alleviate fears and answer questions
Date: -
Name:Patricia
Location:west central, Ohio USA
Date of First Histo Occurence:February 2000
Affected Eyes:Right at onset (became subfoveal within a month), as of April 2000 angiogram showing activity in the left eye as well
Other Stresses at Those Times:Had just returned from an overnight business/pleasure trip a few days prior to my first occurrence and was preparing to leave in a few days for an extended vacation. Did not feel unduly or overly stressed. No history of medical problems.
Laser Surgeries:one. Results:Distortion and double vision was decreased almost immediately. Things seemed to be improving, then 2 weeks later the leaking and bleeding started up again.
Sub Macular Surgeries:none. Results:
Other Medical Treatment:One injection of Kenalog directly in my right eye with hope of reducing the inflamation and thus stabilizing the eye. Vision seemed to be improving, then within week or so the leaking and bleeding started up again.
Nutritional Supplements:
Vision Products Used:
Additional Comments:I've had continuous leaks and bleeds since the onset (over 3 months now). Visual acquity has steadily deteriorated in my right eye. Vision is still correctable to 20/20 in the left eye as the histo activity is not affecting the central vision there. I'm considering Photodynamic Therapy as my next option with hope of stabilizing things. Finding this website has been a godsend for me! It's a wonderful source of information and support. Thank you Blink for creating it! And thank all of you who offer support and share your experiences! :-)
Date: -
Name:Eva
Location:Conyer, GA, USA
Date of First Histo Occurence:During early childhood
Affected Eyes:none, right lung
Other Stresses at Those Times:Had a severe case of pleurisy when I was young. Apparently, contracted the disease around the same time. Thankfully, it became encased in calcium. The calcium has continued to spread and now "grows" up my sternum and around the left side of my neck constricting a vital vein for blood flow to the brain.
Laser Surgeries:. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:
Nutritional Supplements:
Vision Products Used:
Additional Comments:
Date: -
Name:Eva
Location: USA
Date of First Histo Occurence:
Affected Eyes:
Other Stresses at Those Times:
Laser Surgeries:. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:
Nutritional Supplements:
Vision Products Used:
Additional Comments:
Date: -
Name:Jack Goins Jr. Email: <k7hfarms@aol.com>
Location: Kentucky USA
Date of First Histo Occurence:July 87
Affected Eyes:Right
Other Stresses at Those Times:New,full-time job and trying to farm 500 acres. Previous month, Grandfather just passed away and did not know outcome of farming situation. Blood pressue 210/100, but got down to 170/90 with medication.
Laser Surgeries:6. Results:Two laser treatments in 87 which stopped blood vessel growth and leakages for 12 years in right eye, but left me with a medium size blind spot in lower left corner of central vision. Could still read with right eye with know visual aids.
Leakage occured again in April 99. Had 4 laser treatments each appx 6-8 weeks apart. Leakage would stop for 2 wks to a month and then start bleeding again. Stayed on high dose of steroids (60-80 mg pregnisone) throughout time. Have lost all central vision in right eye and impacted visual loss area continues to spread. Evaluating the Visudyne treatment now to stop expansion of loss.
Sub Macular Surgeries:None. Results:
Other Medical Treatment:Keep blood pressure in check with 50mb Capoten/day. May see about another round of steroids, but experienced weight gain and mood swings last time I used steroids. Don't like taking anything, but would do anything to save vision, job and lifestyle.
Nutritional Supplements:Watch my diet and take vit c (1000mg/day) and vit e (1000 IU/day).
Vision Products Used:No. Just praying everyday that my good eye (left) holds up and doesn't start bleeding.
Additional Comments:This is a great sight! There is not an hour of the day that I don't notice or thiink about my eye problems. My mood swings from anger to depression. Unless you experience this problem I don't think anyone understands the devistation and the loss. Stats say 80% of info is processed through your eyes. I have almost zero depth perception, and have trouble driving at night. Late evening or dusk vision is especially bad. Pray everyday that left eye holds up or medical scienc will come up with a solution. Sorry, guess I'm depressed and whining today, and should be thankful my condition is not as bad as some of the surveys I've seen on this site. Good luck to all!
Date: -
Name:Deb. Email: <debnurse@webtv.net>
Location:Cedar Rapids, Iowa USA
Date of First Histo Occurence:1997
Affected Eyes:left
Other Stresses at Those Times:Normal stress. No medical problems.
Laser Surgeries:one. Results:20/30 vision after one laser for two years. 1999 another leak in the central vision. Laser not an option.
Sub Macular Surgeries:none. Results:
Other Medical Treatment:none Am considering PDT for this leak in the central vision.
Nutritional Supplements:Vitamin C, E, and A. Also eating blueberries and drinking green tea at times.
Vision Products Used:
Additional Comments:
Date: -
Name:carolyn. Email: <moscow425@webtv.net>
Location:clinton, ky USA
Date of First Histo Occurence:1990
Affected Eyes:both
Other Stresses at Those Times:
Laser Surgeries:none. Results:
Sub Macular Surgeries:none. Results:
Other Medical Treatment:
Nutritional Supplements:
Vision Products Used:
Additional Comments:i am really stressed from this disease. i am not getting any treatment at this time, i have lost all my central vision in my left eye and now am losing the vision in my right eye.
Date: -
Name:YOLANDA. Email: <accounting@uls.com>
Location:Calgary, Alberta Canada
Date of First Histo Occurence:March 2000
Affected Eyes:Left
Other Stresses at Those Times:Not to my knowledge
Laser Surgeries:one . Results:It blew a leak two weeks later. Now affected area is to close to my central vision.
Waiting for PDT option, Surgery last resort.
Sub Macular Surgeries:. Results:
Other Medical Treatment:Have been on Prednisone 50 mg from beginning. When may vision slightly improved,
It was reduced to 25mg. One week later my vision dropped from 20/25 to 20/60.
Currently my vision is no worse but no better.
Nutritional Supplements:Green Tea, Grapeseed Extract, Phyto-Vision (contains bilberry/grapeseed/gingo),
Fax seed Oil
Vision Products Used:None
Additional Comments:
Date: -
Name:Rae. Email: <mcherewyk@hotmail.com>
Location:Calgary, AB Canada
Date of First Histo Occurence:October 1999
Affected Eyes:Right
Other Stresses at Those Times:Was working 2 part-time jobs, just moved 800 miles away from current home/family to a big city, was looking for other work
Laser Surgeries:. Results:
Sub Macular Surgeries:1. Results:Had surgery on Mar. 20/00. Still waiting to "see" results. There is still some blood at the surgery site that isn't allowing me to see past.
Other Medical Treatment:
Nutritional Supplements:Mulit- vit's, try to drink green tea and take biliberry, eating more fruit/ veggies.
Vision Products Used:no
Additional Comments:
Date: -
Name:Linda. Email: <LKAlberda@aol.com>
Location:Highland Hts., OH USA
Date of First Histo Occurence:1/31/90
Affected Eyes:both
Other Stresses at Those Times:I was involved in lawsuits as trustee of a trust
Laser Surgeries:8-10. Results:first laser surguey successfully stopped the bleeding; two years later, bleeding started again; for next 7-8 weeks, we did surgery and a few days later, it began bleeding again; this went on for several weeks until we decided to stop doing the laser surgery and let it bleed because the macula was already gone
Sub Macular Surgeries:. Results:
Other Medical Treatment:heavy doses of steroids (80 mg/day) for 8 months
Nutritional Supplements:multi-vitamin
Vision Products Used:I use glasses for reading which block out the vision from my bad eye
Additional Comments:
Date: -
Name:Jess. Email: <GirlChick1112 & RoswellGirl1112 (@aol.com)>
Location:Highland, Indiana USA
Date of First Histo Occurence:August 1998
Affected Eyes:One-right eye
Other Stresses at Those Times:I was just beginning middle school and here came this huge problem. I also had to deal with homework, friends, and getting over the scary thought that I might go blind.
Laser Surgeries:1. Results:My eye was doing okay for about 3 months. Then it began leaking again.
Sub Macular Surgeries:2. Results:After the first surgery I was doing great until about 7 months later. I had another surgery, and I have been okay for about 11 months, but it may be leaking again.
Other Medical Treatment:I take eye drops now 4 times a day to help my pressure and imflammation which began acting up just recently.
Nutritional Supplements:
Vision Products Used:I have to wear glasses to protect my good eye.
Additional Comments:I am now 14 years old and I would really like to talk to any other teens around my age about histo. None of my friends understand. So, if you are a teen with histo, please e-mail me!
Date: -
Name:Carol . Email: <giraphics@tyler.net>
Location:Tyler, Texas USA
Date of First Histo Occurence:February 1988
Affected Eyes:both: I have scarring in the center of my right eye, and scarring around the center of my left.
Other Stresses at Those Times:Very stressful time. It was the second year into our own business. I had two small children. Two months after my initial onset, I had to have a partial hysterectomy. 1988 was a very stressful year for me!
Laser Surgeries:none. Results:
Sub Macular Surgeries:none. Results:
Other Medical Treatment:Initially treated with heavy dose of steroids which halted the leakage immediately.
Nutritional Supplements:I take MSM, bilberry, vitamin C, B-Complex, and eats lots of carrots!
Vision Products Used:“Coke bottle” glasses and bifocals. Can’t wear contacts anymore.
Additional Comments:Try to keep my stress level to normal. Keep a good watch on my health in general.
Date: -
Name:Holly. Email: <Kribowski@aol.com>
Location:Milwaukee, WI USA
Date of First Histo Occurence:01/98
Affected Eyes:both
Other Stresses at Those Times:Usual stress. I do have psoriasis' flare-ups in winter.
Laser Surgeries:. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:
Nutritional Supplements:Bilberry
Vision Products Used:None
Additional Comments:My left eye is good. Only inactive spots. Right eye is 20/200. Surgery is not an option for me. Scarring is right in center of right eye. Sub-mac would only offer maybe 5% chance of improvement. Could get worse.
Date: -
Name:Jane Francis. Email: <janefrancis@starpower.net>
Location:Baltimore, Maryland USA
Date of First Histo Occurence:August 1995
Affected Eyes:Both
Other Stresses at Those Times:I'm really healthy but both of my leakages were during stressful times at work. The first time it took me 9 months after the surgery before I switched jobs; this time, I knew things were getting stressful and the leakage started right after I switched jobs!
Laser Surgeries:Two. Results:Right eye stable after laser; it's been almost five years. The left eye was lasered just about 3 weeks ago.
Sub Macular Surgeries:. Results:
Other Medical Treatment:
Nutritional Supplements:
Vision Products Used:
Additional Comments:I hope to keep enough vision to continue my work as an editor, but, even if I can't, and I lose more vision, I'm determined not to lose my sense of humor and positive attitude. This experience has taught me to be brave, to value my friends and family, and to find qualities in them (and me!) that I didn't notice, or pay much attention to before. So, while it is not a good thing, it is also for me a powerful and in some ways very positive experience.
Date: -
Name:kim
Location: USA
Date of First Histo Occurence:
Affected Eyes:
Other Stresses at Those Times:
Laser Surgeries:. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:
Nutritional Supplements:
Vision Products Used:
Additional Comments:
Date: -
Name:kim. Email: <kevbo1971@msn.com>
Location:rockformd, mi USA
Date of First Histo Occurence:april 1999
Affected Eyes:both left and right
Other Stresses at Those Times:Before I was diagnosed, and had laser surgery in the right eye, I suffered from alot of headaches.
Laser Surgeries:1 in the right eye. Results:I had laser surgery in Sept 99 on my right eye.It stopped the grwoth and leakage until March 2000.
Sub Macular Surgeries:1 on the right eye. Results:The macular surgery was performed on March 14th,2000. It is too soon to tell what my vision will be. It does not seem to be that much worse than before I had the surgery.
Other Medical Treatment:As for the left eye, my phsyscian has told me that the disease had gone into the center of the eye and it has been stabilzed since my first visit to him in August of 1999.
Nutritional Supplements:none
Vision Products Used:mY place of employment purchased a pc and a new monitor that is alot larger than what I had before. So far I am able to use this and not any other products.
Additional Comments:
Date: -
Name:John B. Email: <jonh12b@aol.com>
Location:Ramsey, NJ USA
Date of First Histo Occurence:
Affected Eyes:
Other Stresses at Those Times:
Laser Surgeries:. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:
Nutritional Supplements:
Vision Products Used:
Additional Comments:This site is cool.
Good work guys!
You can join Top100-Websites.com, (http://www.top100-websites.com)
Top100-Websites.com
Date: -
Name:Emma Batchelor. Email: <blindbat49@aol.com>
Location:Louisville, Ky USA
Date of First Histo Occurence:Oct, 1973
Affected Eyes:left then right
Other Stresses at Those Times:none at the onset but I was pregnant at the second occurrance both in the left eye
Laser Surgeries:1. Results:I had lasar surgery on right eye in june 1975 on three histo hemorages result was a tiny spot on my vision and it histo recurred within 6 momths and took out my central vision
then it recurred in 1983 and I lost the top of the central vision in the right eye
Sub Macular Surgeries:. Results:
Other Medical Treatment:I had steriod treatment for the left eye in 1973 it seemed to heip my vision cleared up the dr took me off medication and two weeks later histo recurred and took out my central vision in left eye I went back on steriods briefly but due to pregnancy I had to stop treatment
Nutritional Supplements:no just normal vitamins
Vision Products Used:yes I use a handheld magnifier, a CCTv, Magnification with speech program on my computer and hand held monocular for distance vision and a head mounted monocular for school. I also having a talking watch, calculator and alarm clock.
Additional Comments:I have 20/200 in my left eye and 20/300 in my right eye My eye dr. says I have unusally large histo scars in both eyes I have also seen a low vision specialest
Date: -
Name:Linda. Email: <lbill@columbus.rr.com>
Location:Columbus, Ohio USA
Date of First Histo Occurence:July, 1996
Affected Eyes:right
Other Stresses at Those Times:recently divorced; just bought a new home
Laser Surgeries:two. Results:After the first surgery, I had a new flare-up about two weeks later. The second surgery left me with 20/400 vision, but it's now closer to 20/200. Central vision is gone, but peripheral is good.
Sub Macular Surgeries:none. Results:
Other Medical Treatment:no
Nutritional Supplements:just daily vitamins
Vision Products Used:no
Additional Comments:I have asthma (diagnosed in 1994) and nasal polyps. The polyps were removed by laser surgery in May, 1996, but are likely to grow again. I was treated with steroids in December, 1995 to try and shrink the polyps. I've read various viewpoints about steriods and occurences of POHS on this web site.
Date: -
Name:Lora. Email: <jda@defnet.com>
Location:Defiance, Ohio USA
Date of First Histo Occurence:May 1982
Affected Eyes:mostly left ,but right is also affected
Other Stresses at Those Times:I dont remember having any medical problems at the time of onset . It was so many years ago.
Laser Surgeries:1. Results:lost all useable vision in left eye since laser surgery
Sub Macular Surgeries:. Results:
Other Medical Treatment:Ilost the macula early on,and had minor problems,such as retinatitus, pink eye and a lot of pain. Then in 1998 I went to the Drfor a check up in Sept, everything was fine. But 3 weeks later while at my family Dr ,we were talking and I explained what I was seeing , he told me to call my eye Dr at once. When I got home I called him, he asked if I could come right there. I went to the Dr he refered me to a Retina Dr for the next day. The Retins Dr set up surgery on the following Monday, I had a detached retina with sevral tears. Three weeks after surgery I had the laser surgery done. And have since been told by a low vision Dr and NEURO OPTHAMOLOGISTSthat I had a stroke and as a result have lost 75% vision in my right eye.
Nutritional Supplements:I take OMEGA3 (a fish oil),bilberry,DHEA, TriBoron
Vision Products Used:I have a nasal prism on my glasses
Additional Comments:
Date: -
Name:Orinda B. Christoph. Email: <Orinda.Christoph@dsu.edu>
Location:Madison, SD/USA USA
Date of First Histo Occurence:Summer 1985/Fall 1999
Affected Eyes:Right eye/left eye
Other Stresses at Those Times:Stress prior to right eye occurrence - finishing PHD coursework, interviewing for employement and moving to VA. One year prior to the right eye, moved to SD. Teaching more classes with more preps. Children and parent stress due to various life stages each going through.
Laser Surgeries:0. Considering if I am a candidate for sub-macular on left eye.. Results:NA
Sub Macular Surgeries:0 . Results:
Other Medical Treatment:Took prednisone for about 10 days with left eye but with no result.
Nutritional Supplements:I take calcium and vitamin c regularly and did so for different reasons.
Vision Products Used:yes. Have pumped up the size of everything on my computer and have a magnifier for reading the newspaper and magazines.
Additional Comments:
Date: -
Name:Cory. Email: <OlBreathEz@aol.com>
Location:St.Louis, Mo USA
Date of First Histo Occurence:? Found Feb. 2000
Affected Eyes:neither, right lung
Other Stresses at Those Times:Lots of medical problems. I was slowly dying. It was getting harder to do anything. I ran out of breath easily and it was just getting worse. Constant plesursay and pnemunoia,(hope that is spelled right) in the right lung. I was coughing up large amounts of blood, wich the doctors thought that I had T.B.
Laser Surgeries:. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:I had histo in my right lung and ended up having my whole right lung removed. I am now on a med called Sporanox that is supposed to kill the histo.
Nutritional Supplements:
Vision Products Used:
Additional Comments:The doctors didnt know what was wrong with me, they had a hard time diagnosing the histo, as a matter of fact they didnt know what it was untill they took my lung out. I went through three surgeries before they finally figured out what it was. The doctors have told me that from a medical view, this only happens once in a lifetime, to them that is. They really have never seen this kind of histo before. The histo had attacked the three main airways in my lung where they come together as one and was pinching them shut. It was so scarred that the doctors could do nothing to help, but take the whole lung out. The coughing up of the blood was actually from a tear in my lung wich I was told that one more good cough and I would have died. By the way I am very young for this to happen, I am only 24. I have been told that I am the youngest person to have this kind of histo. I have not heard or seen much about histo in the lungs and would like to see or read more about it. Any help would be appreciated.
Date: -
Name:Bob Riegle. Email: <bnriegle@netdirect.net>
Location:Indianapolis, IN USA
Date of First Histo Occurence:Fall--1955
Affected Eyes:left,...later both
Other Stresses at Those Times:NONE
Laser Surgeries: 1---1995. Results:In right eye...another spot-close to macula
was treated with steriods. treatment stopped any further activity.
Sub Macular Surgeries:. Results:
Other Medical Treatment:On Feb 20, 2000, right eye had flare-up...Spot near macula {as in 1995} showing leakage.
Steriod shot into righe eye ball halted leakage. As the lesion to close to macula
no laser treatment was advised..Present 20/40..in right eye.....No central vision in left eye.
Will see my DR. one month out, or sooner.......
Nutritional Supplements:N/A
Vision Products Used:Magnifing glass for newspaper....Am still driving...
Additional Comments: When I first experienced my problem in 1955, I spent a week in the hospital going through various testing ...Back then, no one knew what was causing the vision problem. Six years later, at the Kansas Univ. Eye Dept gave me the answer..HISTO....
Date: -
Name:TOM BENNETT. Email: <TB0462>
Location:SCOTT, ARKANSAS USA
Date of First Histo Occurence:NOV. 95
Affected Eyes:BOTH
Other Stresses at Those Times:NONE THAT I CAN RECALL
Laser Surgeries:TWO. Results:LAZER HAD NO EFFECT.REGRET LAZER . WAS BURNT THROUGH MACULA.LOST TOP HAIF OF MACULA AND FOVEA IN LEFT EYE.
Sub Macular Surgeries:ONE. Results:SUB RETINAL SURGERY WAS SUCESSFUL WITH RESTORED VISION TO 20/80. ALL PROGRESS WAS LOST DUE TO RECURANCES.NO FOLLOW UP SURGERY WAS CONSIDERD. .
Other Medical Treatment:NONE
Nutritional Supplements:I TAKE DIFFERENT TYPES OF VITAMINS.
Vision Products Used:I USE BIOCULAR GLASSES
Additional Comments:I FEEL I HAVE GAINED A LOT BY INCREASING MY OXEGEN INTAKE.DO NOTICE IMPROVEMENT ON AMSLER GRID. BUT CANNOT CONTROL RECURANESES
Date: -
Name:TOM BENNETT
Location: USA
Date of First Histo Occurence:
Affected Eyes:
Other Stresses at Those Times:
Laser Surgeries:. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:
Nutritional Supplements:
Vision Products Used:
Additional Comments:
Date: -
Name:Susan Skoog. Email: <suzjonsun@hotmail.com>
Location:Minneapolis, MN USA
Date of First Histo Occurence:September 1993
Affected Eyes:Both eyes have scars but only left has been treated
Other Stresses at Those Times:Don't think I was stressed prior to the diagnosis; however, by the 2nd and 3rd occurrences I was extremely stressed. In fact, I was rather depressed.
Laser Surgeries:Three: 9/93, 5/94, 9/95. Results:All three laser surgeries were very successful in stopping the bleeding. I was really fortunate in not losing my central vision because of where the treatment was done. By the third surgery my vision was correctable to 20/40, which I am told is a miracle.
Sub Macular Surgeries:None. Results:
Other Medical Treatment:No.
Nutritional Supplements:When I was first diagnosed with ocular histo I went on a frenzied search to find out what I could take to nourish my eyes. I was spending a lot of money on herbs, vitamins, etc. and eating lots of green-leafy vegetables. I will never know if it helped my vision because I still had 2 other bleeds within 2 years of being diagnosed, but I do strongly feel that all of the "extras" that I took helped me retain my 20/40 vision.
Vision Products Used:No.
Additional Comments:When I was diagnosed there really was so little information available to the "layperson." Most everything I could find was in medical terminology that was really difficult to interpret. Because I have been symptom-free for almost 5 years, I have actually become sort of lazy in eating healthy and taking supplements. Since spending the afternoon on the Internet and reading so many interesting stories from others it has made me realize 1) get rid of stress, 2) eat healthy, 3) take supplements, and 4) get enough sleep. I'm sure there have been numerous people who've benefited from this and other websites on histo, but just haven't been able to express their thanks. I am really appreciative of the work that others have done to help educate us!! Thanks.
Date: -
Name:Kerry Jamerson. Email: <kjamerso@harper-wyman.com>
Location:Aurora, Il USA
Date of First Histo Occurence:Oct 1999
Affected Eyes:Right
Other Stresses at Those Times:Had Flu shot a few weeks before, and developed flu like symptoms.
Laser Surgeries:. Results:
Sub Macular Surgeries:1. Results:Initially promising. 20/60 to 20/80 before surgery. Almost totally blind in right eye immediatly following surgery, gradually improved. 20/200 after 2 months. 20/80 after 3 months, then regressed to 20/100 for almost a month, then suddenly in 1 weeks time went to below 20/400. As of 3/16/00, doctors can't determine where the blood is coming from. No new vessels in area.
Other Medical Treatment:Prednisone for 2 months. Didn't seem do make a difference.
Nutritional Supplements:
Vision Products Used:
Additional Comments:
Date: -
Name:Max Hearn. Email: <m-shearn@mindspring.com>
Location:Charleston, South Carolina USA
Date of First Histo Occurence:Right ey should be: 1976 - not 1986!
Affected Eyes:
Other Stresses at Those Times:
Laser Surgeries:. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:
Nutritional Supplements:
Vision Products Used:
Additional Comments:
Date: -
Name:Max Hearn. Email: <m-shearn@mindspring.com>
Location:Charleston, Soutn Carolina, USA USA
Date of First Histo Occurence:Right: November 1986; Left: December 1987
Affected Eyes:Both
Other Stresses at Those Times:In the military, one tends to feel that they must compete with everyone! I was no different. At that time I was away from my family and on an extensive exercise program. This year tour may have contributed to the stress in 1976. I as in manpower (450 employees and placement in positions) and attending college full-time the second flare-up. That was somewhat stressfull!
Laser Surgeries:Three. Results:1977: No treatment or surgery to right eye. 1987:First laser stopped the spot in the edge of my central vision. It didn't sprad. 1994: Second laser did not completely envelope the lesion due to being so close to my fovea. It continued to spread and I had a third to stop the spred (that one had a vessel under it. I could tell by the shapes at the edge of the lesion.) With crossed fingers I tell you that the lesions have stablized at this time .... 20/200 in both eyes.
Sub Macular Surgeries:none. Results:N/A
Other Medical Treatment:My retinal specialist did not have much faith in the steriods, but did tell me about it. I took 60 mg. of prednisone every other day for months. I was on 80 mg. but could not stand the effects ( nor could my wife! .... The steriods changed an already lousey personality even more!) I take no vitamins or natural or prescribed medications for my eyes. I've often wondered about the things that come out about natural medications, but have not jumped off that bridge at this time.
Nutritional Supplements:None
Vision Products Used:I am a veteran of military service and have availed myself of the Blind Rehabilitation Centers that the Veterans Administration has to offer. It is terrific for all that life can throw at you! I can only hope that the state and local governments have something similar to offer to tthe general population. I use a CCTV type reading machine at work and at home. I have computers with Zoomtex and Open Book. I have a set of glasses for everything that you can think of, including a telescopic pair for woodworking! However, the most important thing that I received from the Veterans Administration and from the folks at work .... was to never give in and push for what you are doing or want to do .... by taking ONE STEP AT A TIME until you have made it! Sorry, the last couple of sentences are not about low-vision aids. The Blind Rehabilitation Center allowed me to see and live and work with people that have the same problems in life for a few weeks. It changed mny outlook on life! Boy, what a powerful low-vision aid!
Additional Comments:Thank you for the posting of this site! I have enjoyed reading the experiences that others ahve had. To all who continue down the road of diminished vision let me say two things: If you have POHS, you will always be able to see light and try to keep the attitude of the "half-full" glass. Sure, life is tough! .... but .... think of the alternatives.
Date: -
Name:George Sears. Email: <geos8@excite.com>
Location:Mt. Orab, OH USA
Date of First Histo Occurence:5/93
Affected Eyes:both
Other Stresses at Those Times:At that time, experiencing severe financial problems stemming from illness & death of my mother. These led to bankruptcy, so there was stress there!
Laser Surgeries:1. Results:Completely halted the leakage, while leaving a blind spot of about 5% of macular vision area in left eye. No reoccurence yet, but since I was told I have approx. 30 spots in both eyes, I figure it's just a matter of time.
Sub Macular Surgeries:none. Results:I had never heard of this procedure until I found this site.
Other Medical Treatment:none
Nutritional Supplements:I take a daily multi-vitamin, and 400 I.U. vitamin E persuant to an unrelated condition.
Vision Products Used:None, other than the correctional glasses that I've worn since I was 11.
Additional Comments:Thanks so much for this place where we can come and not feel so all alone with this illness. It really does make one feel isolated, doesn't it? While we each have to deal with our individual condition, it's nice to know that there are others who understand and commiserate. I just wish each person who has this to deal with all the luck in the world. My heart goes out to you all, and I'll pray for you. And finally, it's obvious after reading so many testimomies that stress definitely plays a large part in the level of affliction and re-occurence. I know it's easier said than done, but try to stay relaxed and don't let things get to you. After all, what could be more important than your sight?
Date: -
Name:Caprice Henderson. Email: <Beriblond@yahoo.com >
Location:Lakeland, FL USA
Date of First Histo Occurence:
Affected Eyes:
Other Stresses at Those Times:Not sure what Histo is...My 6 year old son has had bleeding in the back of his righteye and now his left eye. We don't know what is causing it. He has had three operations since December 7. I don't know where to turn or what to look for. If anyone has any suggestons or ideas please email me.
Laser Surgeries:3. Results:After first surgery, retina became detached. Then became detached again. Was also torn.
Sub Macular Surgeries:. Results:
Other Medical Treatment:Used prednisolone, lotemax, maxitrol
Nutritional Supplements:Need ideas on what to take.
Vision Products Used:no
Additional Comments:Please, please email with any comments...I am a desperate mother looking for answers.
Date: -
Name:susan haldiman. Email: <shaldiman@abdgroup.com>
Location:Chicago, IL USA
Date of First Histo Occurence:since childhood *see addnl comments - I have multifocal choroiditis
Affected Eyes:both
Other Stresses at Those Times:lazy eye in the left eye. Since right eye was dominant, I didn't notice problems that came up in the left eye. I first had a lesion or hemorrage near the fovea of my right eye in July of 1999. Laser treatment took care of it, but I had a new hemorrage over the fovea in August of 1999. Been on and off steroids for six months. Now I have to decide on surgery.
Laser Surgeries:1. Results:see my comments above.
Sub Macular Surgeries:. Results:
Other Medical Treatment:
Nutritional Supplements:Was taking an herbal supplement called MaximEyes containing lutein, bilberry and vitamin E. Now taking blue-green algae supplements and enzymes with vitamin E.
Vision Products Used:No... current vision is 20/40 in left eye(with scars from past lesions) and 20/80 in right eye that currently has a pigmented blood vessel directly over the fovea.
Additional Comments:I have a condition similar to but distinct from histo, called multifocal choroiditis or punctate inner choroidopathy. It causes hemorrages/lesions similar to histo, but of unknown cause. I have been searching dilligently for info, but have found very little, and nothing on support groups or alternative treatments. Please help!
Date: - Wednesday, March 01, 2000 at 13:32:58 (EST)
Name:Debbie Buttle. Email: <wayne.buttle@ns.sympatico.ca>
Location:New Glasgow, Nova Scotia Canada
Date of First Histo Occurence:Feb 24 ,1999
Affected Eyes:left
Other Stresses at Those Times:I was in a car accident . Rear-ended in a parking lot. Severe whiplash and
my vision dimmed for a month or so .Then I began to see a spot and it got larger
so I went to see about it . I was sent to 2 other Dr.'s the second being a retinologist
and he said that he didn't know what it was or why it was there but I was bleeding
in the back of the eye and needed laser treatment immediately.
So I had that done then and again on my return visit 2 weeks later.
Then he still didn't know what it was. It wasn't until he received
a letter from my lawyer that he put this mane to my condition
PRESUMED OCULAR HISTOPLASMOSIS. I HAVE NEVER HEARD OF
THIS BEFORE AND I STILL DON'T BELIEVE THAT IS WHAT I HAVE!
I am seeking information on what testing can be done to affirm that
this is what I actually. I have read on the internet that there are blood tests ,
skin and urine test also. Any information will be appreciated!
Laser Surgeries:2. Results:Have a blind spot just below the retina on the
left eye and it at first was like a shimmering
pool of mercury and it would react if I had stress
or did something strenuos like housework or chase my grandson
while we played. I asked my Dr. was this a reaction to the
laser and he answered that it was nothing that he did! Great! I thought
I also experienced a glowing after the laser .
I even saw this glowing disc when I closed my eyes .
It was very hard to go to sleep and to do my chores as
it would shimmer like the waves on a lake with the noon-day sun
shining down onit. Very distracting and stressfull
Sub Macular Surgeries:. Results:
Other Medical Treatment:My Dr. when asked what I could do to prevent this
was" we did it already your treatment is done !
There is nothing you can take to prevent this .
Just keep checking every few days on the grid and
if you have any change call me right away"
Nutritional Supplements:
Vision Products Used:I had to get new rx glasses as the ones I have from 2 years ago didn't help after the treatment. My eyes seemed to get worse rather quickly. I also have flashes in the lower left hand corner of my eye. But He of course defended himself and said that he wasn't the cause of that either. He has no idea what is causing these flashes of light several times a day.
Additional Comments:I am seeking information on teseing for histo. If anyone has information on this would they please contact me at this email address so I can find out if this is really histo or not . Thanks and God bless us Every one!!!!
Date: - Wednesday, February 23, 2000 at 13:46:24 (EST)
Name:Troy Eriksen. Email: <ajerik@mvillage.com>
Location:Montpelier, Ohio USA
Date of First Histo Occurence:app nov 1996
Affected Eyes:right eye
Other Stresses at Those Times:none
Laser Surgeries:1. Results:1 month later blood vessels worse resulting in surgery
Sub Macular Surgeries:1. Results:Jan/february 1997. left donut hole blind spot in eye
Other Medical Treatment:none. but the size of the donut hole has doubled recently while strangely enough the vision has improved to 20/30
Nutritional Supplements:
Vision Products Used:
Additional Comments:has histo scar tissue in left eye, no signs of vessel development yet. posted for my brother as he does not have computer
Date: - Sunday, February 20, 2000 at 21:45:47 (EST)
Name:Troy Eriksen. Email: <ajerik@mvillage.com>
Location:Montpelier, Ohio USA
Date of First Histo Occurence:app nov 1996
Affected Eyes:right eye
Other Stresses at Those Times:none
Laser Surgeries:1. Results:1 month later blood vessels worse resulting in surgery
Sub Macular Surgeries:1. Results:Jan/february 1997. left donut hole blind spot in eye
Other Medical Treatment:none. but the size of the donut hole has doubled recently while strangely enough the vision has improved to 20/30
Nutritional Supplements:
Vision Products Used:
Additional Comments:posted by his sister as he does not have computer
Date: - Sunday, February 20, 2000 at 21:44:16 (EST)
Name:Jennifer. Email: <Jennifer_Cole@southmont.k12.in.us>
Location:Crawfordsville, IN USA
Date of First Histo Occurence:July 1999
Affected Eyes:Right
Other Stresses at Those Times:I am a Jr. High and High School Choral Director. Last year was my first in a very high-powered program. My father
passed away in March 1999.
Laser Surgeries:. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:I am in the PDT study at Emory University. I have visited Emory three times. I was diagnosed in Danville, IL on July 27. I was referred to Dr. Cuilla at IU Med Center in Indianapolis and saw him on July 29. He laid out the options for me: 1. Do Nothing 2. Steroids 3. Sub-macular Surgery 4. PDT Study (if I qualified). What he didn't know was that the study was closing enrollment on July 30. Through a stroke of good luck, and I truly believe, a grander power, I was able to connect with Emory, make flight arrrangements and fly (with my Mother) to Atlanta to be screened for the study the very next day. I met the requirements and received my first treatment that day. I believe my vision in the affected eye was 20/100. I returned to Emory for the 3 month follow-up on November 2. I actually read one letter worse than the previous visit. There was still leakage and bleeding, so I received another
treatment. I was ther on Jan. 25 for my third visit. at that time, the vision in my affected eye was 20/64. There was no leakage or bleeding, so I did not receive a treatment. I will continue to go to Emory every three months until July 2001.
Nutritional Supplements:
Vision Products Used:
Additional Comments:
Date: - Thursday, February 17, 2000 at 21:40:48 (EST)
Name:Peete
Location: USA
Date of First Histo Occurence:1991
Affected Eyes:both
Other Stresses at Those Times:none
Laser Surgeries:1. Results:20/70 before surger,20/400 now
Sub Macular Surgeries:. Results:
Other Medical Treatment:
Nutritional Supplements:tak vit. a, e, & c daily
Vision Products Used:5x to 7 x mag. to work
Additional Comments:Wish I had more inf. help, and if any thing has been found to help this cond.
Date: - Thursday, February 17, 2000 at 16:53:52 (EST)
Name:Ineke Kaman. Email: <hkaman@hetnet.nl>
Location:Oostwold (old), Groningen Netherlands
Date of First Histo Occurence:1991
Affected Eyes:Both
Other Stresses at Those Times:Pregnant of third child.
Laser Surgeries:several. Results:The laser surgeries were later, when my eyes developed "strange" bloodvessels
Sub Macular Surgeries:. Results:
Other Medical Treatment:
Nutritional Supplements:I used prednisolon.
Vision Products Used:I wear contact-lenses.
Additional Comments:Great idea, this Survey.
Date: - Thursday, February 17, 2000 at 14:54:47 (EST)
Name:Jose Bloemsma. Email: <bloemsma_jose@hotmail.com>
Location:Emmen, Drenthe Netherlands
Date of First Histo Occurence:september 1997
Affected Eyes:left eye
Other Stresses at Those Times:I had some problems with my sinusses, in terms off chronicle inflammation and always a cold.
Laser Surgeries:1. Results:No substantial loss off vision, this was my first Laser Surgery(in August 1999), following former Sub Macular Surgerie in sep. 1997
Sub Macular Surgeries:1. Results:Before: Vision left eye 1/60(ca. 2-5% sight), so almost no sharp vision. After: Vision left eye approximately 80%.
Other Medical Treatment:I also have been treated for my sinussus( October 1997 ) after I was diagnosed positive for P.O.H.S.
Nutritional Supplements:
Vision Products Used:Glasses.
Additional Comments:I am very glad that I have had surgery in december 1997 in Nymegen , in one of the two hospitals in the Netherlands were they do this kind of surgeries. Because before the surgery I had almost no sharp vision left.
Date: - Friday, February 11, 2000 at 15:22:14 (EST)
Name:Jose Bloemsma
Location: USA
Date of First Histo Occurence:
Affected Eyes:
Other Stresses at Those Times:
Laser Surgeries:. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:
Nutritional Supplements:
Vision Products Used:
Additional Comments:
Date: - Friday, February 11, 2000 at 14:40:45 (EST)
Name:Natasha Stephan. Email: <stephann@lindahall.org>
Location:Kansas City, MO USA
Date of First Histo Occurence:unknown (childhood?)
Affected Eyes:histo spots in both
Other Stresses at Those Times:I didn't know stress could be a factor, but I will try to be careful! I hope computers (my job) don't provide too much eyestrain!
Laser Surgeries:. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:My retinal specialist gave me an Amsler grid to look at every day.
Nutritional Supplements:I have heard that bilberry (blueberry) is good for vision (prevents macular degeneration). Good thing, because I love blueberries!
Vision Products Used:I wear contacts/glasses.
Additional Comments:I am glad my regular optometrist happened to notice the histo spots - I'm lucky to be aware of the potential for problems later in life (I'm 26 now).
Date: - Friday, February 11, 2000 at 10:36:50 (EST)
Date of First Histo Occurence:
Affected Eyes:
Other Stresses at Those Times:
Laser Surgeries:. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:
Nutritional Supplements:
Vision Products Used:
Additional Comments:
Date: - Thursday, February 10, 2000 at 00:19:44 (EST)
Name:Donna. Email: <Starseeker46@aol.com>
Location: Kentucky USA
Date of First Histo Occurence:August 99
Affected Eyes:Left
Other Stresses at Those Times:none
Laser Surgeries:none. Results:
Sub Macular Surgeries:none. Results:
Other Medical Treatment:none
Nutritional Supplements:none
Vision Products Used:none
Additional Comments:My vision in my left eye gets better then gets worse again and this saga seems to be continuing. I don't want to have laser or sub mac surgery because I don't want the permanent damage these treatments leave. The doctor says I have no histo scars in my right eye. I have learned a lot by reading others post to this site. Thank you for posting.
Date: - Tuesday, February 08, 2000 at 19:06:36 (EST)
Name:Vicki Nash. Email: <vnash@hotmail.com>
Location:MONTROSS, VA USA
Date of First Histo Occurence:SEPTEMBER 1996
Affected Eyes:RIGHT
Other Stresses at Those Times:
Laser Surgeries:1. Results:STOPPED THE LEAKAGE, BUT I HAVE TO SQUINT (ALMOST CLOSE)THAT EYE IN ORDER TO READ ANYTHING.
Sub Macular Surgeries:. Results:
Other Medical Treatment:NO
Nutritional Supplements:NO
Vision Products Used:NO
Additional Comments:
Date: - Monday, February 07, 2000 at 16:11:52 (EST)
Name:Kathy. Email: <kattor@sympatico.ca>
Location:Kitchener, Ontario Canada
Date of First Histo Occurence:Oct '98
Affected Eyes:scars in both; flareup in left
Other Stresses at Those Times:nothing unusual
Laser Surgeries:1. Results:expected blind spot in left eye
Sub Macular Surgeries:. Results:
Other Medical Treatment:
Nutritional Supplements:
Vision Products Used:contact lenses
Additional Comments:
Date: - Saturday, February 05, 2000 at 22:50:51 (EST)
Name:Kathy. Email: <kattor@sympatico.ca>
Location:Kitchener, Ontario Canada
Date of First Histo Occurence:Oct '98
Affected Eyes:scars in both; flareup in left
Other Stresses at Those Times:nothing unusual
Laser Surgeries:1. Results:expected blind spot in left eye
Sub Macular Surgeries:. Results:
Other Medical Treatment:
Nutritional Supplements:
Vision Products Used:
Additional Comments:
Date: - Saturday, February 05, 2000 at 22:50:00 (EST)
Name:Jane. Email: <joeandjaneb@cornhusker.net>
Location:lincoln, ne USA
Date of First Histo Occurence:January 2000
Affected Eyes:Right
Other Stresses at Those Times:Personal Stress, but not serious or medicated
Laser Surgeries:One. Results:Still Waiting- No improvement in sight so far
Sub Macular Surgeries:NONE. Results:
Other Medical Treatment:No
Nutritional Supplements:No
Vision Products Used:Glasses for reading
Additional Comments:
Date: - Friday, February 04, 2000 at 22:40:07 (EST)
Name:j
Location: USA
Date of First Histo Occurence:
Affected Eyes:
Other Stresses at Those Times:
Laser Surgeries:. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:
Nutritional Supplements:
Vision Products Used:
Additional Comments:
Date: - Friday, February 04, 2000 at 22:36:28 (EST)
Name:Marlea. Email: <5457@aol.com>
Location:Covington, IN USA
Date of First Histo Occurence:September 1983
Affected Eyes:Right 1983 Left l996
Other Stresses at Those Times:Stress of son with depression and ADD, and daughter in car wreck
Laser Surgeries:2. Results:Right - total loss of center vision Left - annoying blind spot from laser surgery
Sub Macular Surgeries:none. Results:
Other Medical Treatment:I had a cortisone shot in 1983. It did not help. The laser surgery left me with total center vision loss. Was on prednisone for a few days. Couldn't sleep and couln't stop eating. Didn't help my eye
Nutritional Supplements:
Vision Products Used:
Additional Comments:
Date: - Friday, February 04, 2000 at 18:11:02 (EST)
Name:Jane. Email: <joeandjane@cornhusker.net>
Location:lincoln, ne USA
Date of First Histo Occurence:Jan 2000
Affected Eyes:Right
Other Stresses at Those Times:Lots of personal stress at the time-nothing that I didn't think I couldn't handle.
Laser Surgeries:One. Results:Only done 5 days ago-no results yet.
Sub Macular Surgeries:o. Results:
Other Medical Treatment:I was scheduled for ovarian surgery the day after this occured. Of course, that surgery was cancelled. Don't feel there was any relationship.
Nutritional Supplements:No-still learning
Vision Products Used:Just magnification glasses for close reading.
Additional Comments:I am a nurse in a doctor's office, and had never heard of this. I am very worried about my livelihood, and the prospect of living with this condition. My vision is very poor in my right eye, and I have headaches on stressful days. I have been confused over the information received, and the "hurry up" attitude of having the laser. I wanted something done, but I was very hesitant because I didn't know all the options. My doctor did relieve some of the fears, but I am still full of questions.
Date: - Friday, January 28, 2000 at 21:35:21 (EST)
Name:Olive. Email: <Raustin741@cs.com>
Location: TN USA8
Date of First Histo Occurence:8-80
Affected Eyes:right
Other Stresses at Those Times:1st occurrence was after I had given birth to our daughter. 2nd occurrence was about 9 years later and all was going well in my life. After that I have had continuous problems until 2 years ago. I started taking Zyrtec for my allergies (food allergies). I take it 2 times a day and I haven't had a flair up since. Maybe coincidence, but I'm glad.
Laser Surgeries:one. Results:Was only good for about 1 year, then more flair ups in different places, but still only in right eye.
Sub Macular Surgeries: two. Results:Better for only about a year, then more problems and my retina decided to detatch. They put on a "buckle" on to help hold retina
Other Medical Treatment:I've taken lots of Predisone over the years. Sometimes I've had to take it for 9 months out of 12. It kept me from surgery.
Nutritional Supplements:multi vitiamin and calcium
Vision Products Used:no
Additional Comments:I've lived with this for 20 years. It hasn't always been easy, but I do have vision out of my left eye which I am thankful!
Date: - Saturday, January 22, 2000 at 21:09:16 (EST)
Name:Olive. Email: <Raustin741@cs.com>
Location: TN USA8
Date of First Histo Occurence:8-80
Affected Eyes:right
Other Stresses at Those Times:
Laser Surgeries:. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:
Nutritional Supplements:
Vision Products Used:
Additional Comments:
Date: - Saturday, January 22, 2000 at 20:48:46 (EST)
Name:Olive. Email: <Raustin741@cs.com>
Location: USA
Date of First Histo Occurence:
Affected Eyes:
Other Stresses at Those Times:
Laser Surgeries:. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:
Nutritional Supplements:
Vision Products Used:
Additional Comments:
Date: - Saturday, January 22, 2000 at 20:47:09 (EST)
Name:Kathie. Email: <kmg@greenapple.com>
Location:Pleasantville, Ohio USA
Date of First Histo Occurence:1982
Affected Eyes:Both
Other Stresses at Those Times:Pregnancy, colds, flus,
Laser Surgeries:. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:Massive doses of prednisone upon onset until "hot spot" fades. Then dose reduced.
Nutritional Supplements:Yes. Mostly just multiple vitimins.
Vision Products Used:I use 2.75 reading glasses. My computer at work and home have very large display. I love to read but now I listen to books on tapes.
Additional Comments:I enjoy wildlife but when the birds have more rights than I do, I think this goes to far.
Date: - Sunday, January 16, 2000 at 21:32:29 (EST)
Name:Lisa. Email: <LMS31463@aol.com>
Location:Cincinnati, OH USA
Date of First Histo Occurence:March 1999
Affected Eyes:Both
Other Stresses at Those Times:I am a teacher and that can be stressful sometimes! Last year we got a new principal and the climate of the school changed. I wasn't happy there and that added more stress. This year I moved to a new school and I love it! The work stress has resolved itself, but I still live in fear that I will have a blood vessel burst in my right eye as I did in my left. I lost all central vision when that happened last year. It would be devastating to anyone to face such a loss, but it was really hard for me because I use my eyes so much to grade papers and watch sneaky children. (Fortunately, I still have vision from the side...that helps with sneaky!:)) My doctor was initially having me come in every month to screen the left eye and was screening the right every 3 months. Now I am on a 6 month screen with my next appointment in February. The dye makes me sick every time I go! Does anyone else have that happen? I also suffer from digestive trouble. I had never heard that it was a possible side effect of the histo. I'd like to investigate that more. I was glad to find this place on the net. It will be nice to talk to other people who have gone through the same things. My husband has been suppotive, but I don't think he understands my fears. I don't think anyone really can comprehend unless they have been there themselves!
Laser Surgeries:1. Results:I lost most of the vision in my left eye. The doctor says due to the severity of the blood vessel rupture, I am very lucky I can see out of the eye at all.
Sub Macular Surgeries:. Results:
Other Medical Treatment:None
Nutritional Supplements:None
Vision Products Used:No, but I have had some tinted glasses made to help deal with distortion while at work. Flourescent lights drive me crazy!
Additional Comments:
Date: - Friday, January 14, 2000 at 10:52:12 (EST)
Name:Karleen Clark. Email: <kclark@coloradomtn.edu>
Location:Glenwood Springs, CO USA
Date of First Histo Occurence:Oct 1999
Affected Eyes:Left only
Other Stresses at Those Times:Vein problems in lower leggs, working mom, attending college.
Laser Surgeries:. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:Recently had Vein stripping done in both leggs due the valves not working.
As a result, blood was pooling in my lower legs and not returning to the heart.
Had alot of swelling and leg pain. Since surgery, doing great and have no
swelling nor leg pain.
Nutritional Supplements:Daily Vitamins
Vision Products Used:No
Additional Comments:Initial occurance seemed to take care of itself. Grewup in Iowa.
Date: - Monday, January 10, 2000 at 15:08:40 (EST)
Name:Michael Dale. Email: <mdale1@columbus.rr.com>
Location:Delaware, Ohio USA
Date of First Histo Occurence:1981
Affected Eyes:both
Other Stresses at Those Times:Developed first problem in my left eye just after I had started a new job in a new city. The problem in my other eye was a few months later and I was under the stress of loosing the vision in my left eye.
Laser Surgeries:1. Results:Stopped the damage from spreading but of course, the laser left permanent damage.
Sub Macular Surgeries:none. Results:This procedure wasn't yet available
Other Medical Treatment:The problem in my left eye (now 20/200) was diagnoised too late for treatment other than steroids which provided no help. Laser surgery stopped the spread of the problem in my right eye leaving some impared vision.
Nutritional Supplements:multi vitamins
Vision Products Used:No
Additional Comments:Sudden vision loss is extremely traumatic. I wish there was a group around like this for me 20 years ago. I also suffer from some digestive problems and I have heard this can be yet another side effect from histo. Does anyone have any information and/or treatment for this possible connection?
Date: - Thursday, January 06, 2000 at 12:12:48 (EST)
Name:Rayna. Email: <reinaleg@cs.com>
Location:Hattiesburg, Mississippi USA
Date of First Histo Occurence:Nov. 15, 1999
Affected Eyes:right
Other Stresses at Those Times:no
Laser Surgeries:1. Results:Sealed the blood vessel. I still have distorted vision. I also have 2 weak spots in the left eye.
Sub Macular Surgeries:. Results:
Other Medical Treatment:
Nutritional Supplements:
Vision Products Used:
Additional Comments:
Date: - Tuesday, January 04, 2000 at 23:22:25 (EST)
Name:MARY MINOR. Email: <MLM5250>
Location:ATLANTA, GA USA
Date of First Histo Occurence:APRIL 96
Affected Eyes:BOTH
Other Stresses at Those Times:
Laser Surgeries:. Results:
Sub Macular Surgeries:2. Results:NOT SO GOOD
Other Medical Treatment:
Nutritional Supplements:
Vision Products Used:
Additional Comments:
Date: - Sunday, January 02, 2000 at 15:33:12 (EST)
Name:Ann. Email: <cubby01@ibm.net>
Location: Michigan USA
Date of First Histo Occurence:11/83
Affected Eyes:right
Other Stresses at Those Times:At the time the haemorrhage occured I was feeling angry, otherwise the usual ups and downs of life
Laser Surgeries:none. Results:I lived in Ontario at the time of my initial occurence, I had lost all my central vision and there was no lazer available that wouldn't do more extensive damage. To cut a long story short, I never did have lazer treatment, and though it took a long time to resolve I am told I have retained more sight because I didn't have the treatment.
Sub Macular Surgeries:none. Results:
Other Medical Treatment:
Nutritional Supplements:Multivitamins
Vision Products Used:No
Additional Comments:
Date: - Saturday, January 01, 2000 at 15:11:38 (EST)
Name:robyn. Email: <butcher@tir.com>
Location: mi USA
Date of First Histo Occurence:10/20/99
Affected Eyes:right
Other Stresses at Those Times:no
Laser Surgeries:1. Results:not successful
Sub Macular Surgeries:. Results:
Other Medical Treatment:
Nutritional Supplements:
Vision Products Used:no
Additional Comments:
Date: - Wednesday, December 29, 1999 at 18:21:19 (EST)
Name:Jim. Email: <jimh@seavcom.com>
Location:Seattle, WA USA
Date of First Histo Occurence:1981, 86, 94, 97
Affected Eyes:both
Other Stresses at Those Times:Much work-related stress, other existential stresses also.
Laser Surgeries:two. Results:one add'l blindspot in left eye that is no longeran annoyance, no central vision in right eye.
Sub Macular Surgeries:none. Results:
Other Medical Treatment:Thalidomide. I credit this with stopping and reversing the most recent two simultaneous events in my left eye that threatened to take the central vision.
Nutritional Supplements:I take vitamins, but I always have. I Don't attribute any special properties to them. I have been taking 5HTP and SAM-e (amino acids) as an alternate to traditional antidepressants. This is my own idea.
Vision Products Used:With glasses the vision in my left eye is OK.
Additional Comments:
Date: - Monday, December 27, 1999 at 18:31:40 (EST)
Name:DAVID AGNEW. Email: <bleekcat@yahoo.com>
Location:kansas cty, missouri USA
Date of First Histo Occurence:march 1992
Affected Eyes:right
Other Stresses at Those Times:
Laser Surgeries:maybey in feb 2000. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:
Nutritional Supplements:
Vision Products Used:
Additional Comments:
Date: - Friday, December 24, 1999 at 12:38:36 (EST)
Name:Linda. Email: <stitcher@iquest.net>
Location:Indianapoliss, IN USA
Date of First Histo Occurence:1974
Affected Eyes:only left until 1995
Other Stresses at Those Times:normal stresses
Laser Surgeries:. Results:
Sub Macular Surgeries:1. Results:Submac in right eye in 1996. Vision back to approx 20/50, until 11/99. Currently 20/100 to 20/200 with docs saying the histo is not active.
Other Medical Treatment:Ususally treated with oral prednisone, which improved vision all but two times
Nutritional Supplements:No, but interested in finding out more.
Vision Products Used:No, but hope to consult with one soon.
Additional Comments:Also have asthma, narcolepsy, low thyroid, diabetes.
Date: - Tuesday, December 21, 1999 at 18:52:16 (EST)
Name:Scott W. DeLozier. Email: <delozier@hotmail.com>
Location:Lemoore, Ca USA
Date of First Histo Occurence:12/99
Affected Eyes:Right
Other Stresses at Those Times:
Laser Surgeries:1. Results:Going for follow-up on January 4th, 2000. I still have blury vision and now have a small black spot from surgery
Sub Macular Surgeries:none. Results:
Other Medical Treatment:none
Nutritional Supplements:none
Vision Products Used:none
Additional Comments:I am currently in the U.S. Navy. I am an aircraft electrician on F/A-18 airplanes. I just hope this doesn't end my career
Date: - Thursday, December 16, 1999 at 01:18:11 (EST)
Name:Gina Cronican. Email: <GCronican@agp.com>
Location:Omaha, NE USA
Date of First Histo Occurence:11/95
Affected Eyes:left
Other Stresses at Those Times:first occurrence happened when I was six months pregnant and traveling a lot.
Laser Surgeries:2. Results:hemmarage was stopped - lost vision in about 1/4 of left eye.
Sub Macular Surgeries:none. Results:
Other Medical Treatment:
Nutritional Supplements:No - what is recommended ?
Vision Products Used:no
Additional Comments:
Date: - Tuesday, December 14, 1999 at 19:43:49 (EST)
Name:Kris Woodhouse. Email: <kaydeewood@msn.com>
Location:Hoffman, IL USA
Date of First Histo Occurence:August 1997
Affected Eyes:right eye
Other Stresses at Those Times:just after returning from vacation with family
Laser Surgeries:2. Results:1st laser stopped it well we thought, I still had the 'center dot' left. 2nd laser on December 14, 1997, sucessful in stopping the leaking & bleeding, yet 'center dot' gone.
Spots in my good eye, yet not near central vision.
Sub Macular Surgeries:none. Results:n/a
Other Medical Treatment:none to speak of, other than lots of sinus problems
Nutritional Supplements:multivitimens, tried occuvite for awhile after the 1st laser, then stopped.
Vision Products Used:none,
Additional Comments:First, I'm totally amazed that there are really so many people effected by this. I have rarely found anyone who knew what it was. Second, this is great that so much information is available here to share. My first occurance I saw the side of the kids faces distored, covered my eye and realized I should call my eye doc. I did, when he finally sqeezed me in, he gave me no answers and said not to lift anything heavy until I see the retina doc. After looking the retina doc. asked me if I was from 'around here'. When I told him I grew up on a farm, he then asked, did you have chickens? I didn't know what to think, horses, cattle, dogs, & cats, but no chickens. Not knowing anything about it, it seemed so rushed to make that decision to have the first laser or to 'wait it out'. It dried up somewhat, but obviously not good enough, as my 2nd recurrence was just before christmas that year, 8 weeks later. Life totally changes and it is so out of your control. I was a stay at home mom with a 1 & 5 yr. old, and used to contract audit work (very stressful). After the first occurance when I still had central vision, yet distored, I thought I wouldnever be able to do that again. I decided to learn to paint. I did and absolutely love it. Then after the 2nd reccurance, with the central now gone, I did find a way to audit again, not the same, it takes me longer but I'd rather paint!
Date: - Monday, December 13, 1999 at 22:40:09 (EST)
Name:Dean Heckman. Email: <tigertoo@netzero.net>
Location:Springwater, New York USA
Date of First Histo Occurence:March 1996
Affected Eyes:Both
Other Stresses at Those Times:My job was very stressfull at the time I was experiencing vision problems.
Laser Surgeries:. Results:Left eye has completely scared over and now at 20/400 with no sign of leakages. Right eye is showing signs of leakage and requires surgery.
Sub Macular Surgeries:. Results:
Other Medical Treatment:
Nutritional Supplements:No
Vision Products Used:No
Additional Comments:Comjpletely over-whelmed with this condition.
Date: - Saturday, December 11, 1999 at 00:08:17 (EST)
Name:Dean Heckman. Email: <tigertoooooiuhnj>
Location: USA
Date of First Histo Occurence:
Affected Eyes:
Other Stresses at Those Times:
Laser Surgeries:. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:
Nutritional Supplements:
Vision Products Used:
Additional Comments:
Date: - Friday, December 10, 1999 at 23:34:43 (EST)
Name:Cathe. Email: <etter@pa.net>
Location:Blain, PA USA
Date of First Histo Occurence:10/96
Affected Eyes:none
Other Stresses at Those Times:The only stess that I had at that time was due the doctors not knowing what the tumor in my lung was from. They orginally thought that I had lung cancer. After the lung biopsy and open lung surgery they found that I had histoplasmosis
Laser Surgeries:. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:Amph B for 60 days throught a central line, prednisone 60 mg daily for 3 months
Nutritional Supplements:no
Vision Products Used:no
Additional Comments:I have never developed eye problems from the histo. I am interested in knowing if anyone has developed skin lesions after having histoplasmosis. I have been under a doctors care since December 1996. I have had two open lung biopsies and had many weeks of amphotericin B therapy. I have never recovered my strength, I often get sick in my stomach and throw up often. In the last seven months I have develop skin lesion on my leg and arms. I have been on many different types of medicine to clear it up. Unfortunely, the rash cleared up two time, but it has now returned and I have not been able to get rid of it for the last two months. I would like very much to hear from any one who had these symptoms after having histoplasmosis
Date: - Tuesday, December 07, 1999 at 23:53:06 (EST)
Name:Jason Simms. Email: <simms7@marshall.edu>
Location:Huntington, WV, USA USA
Date of First Histo Occurence:May 1999
Affected Eyes:Both have histo spots, right eye is active
Other Stresses at Those Times:None really. I am a senior college student trying to graduate in the next year and a half.
Laser Surgeries:1. Results:stoped growth of blood vessels for a few weeks.
Sub Macular Surgeries:not yet. Results:
Other Medical Treatment:In June I was sent to Johns Hopkins, the Wilmer Eye Institute, to be included in the
submacular surgery trials. After going through the interview process and
flueroscene angiogram, Dr. Haller reviewed my pictures. Between the time I had
my last pictures taken and this point (about 2 weeks) the bleeding and fluid had
decreased, so I wasn't accepted into the study. The growth of blood vessels stabilized
until a week ago. Within the next two weeks I will undergo submacular surgery.
Currently my vission is 20/300.
Nutritional Supplements:
Vision Products Used:No
Additional Comments:I would like to hear from others who have had submacular surgery.
Date: - Tuesday, December 07, 1999 at 20:36:18 (EST)
Name:Megan. Email: <mcmackme@yahoo.com>
Location: MI USA
Date of First Histo Occurence:December 1993
Affected Eyes:Right
Other Stresses at Those Times:Started freshman year of college, which was probably somewhat stressful.
Laser Surgeries:2. Results:Permanent blind spot surrounding and including the macula
Sub Macular Surgeries:. Results:n/a
Other Medical Treatment:Took oral corticosteroids for six weeks. No change in my eye, but I put on about ten pounds!
Nutritional Supplements:No
Vision Products Used:Just wearing glasses with polycarbonate lenses to protect my healthy eye from external damage or trauma.
Additional Comments:
Date: - Tuesday, December 07, 1999 at 09:48:02 (EST)
Name:Robert. Email: <bbfobfan@gnt.net>
Location:Fort Walton Beach, Florida USA
Date of First Histo Occurence:December 1995
Affected Eyes:Both
Other Stresses at Those Times:Hemorrhage occurances seemed stress related
Laser Surgeries:3. Results:Laser surgery was successful in stopping the hemorrhaging, although left me with 20/200 vision in the right and 20/30 in left eye
Sub Macular Surgeries:None. Results:
Other Medical Treatment:Steroid treatments in the left eye
Nutritional Supplements:vitamins
Vision Products Used:No
Additional Comments:Thank you for your superb informative site, good luck to all!
Date: - Monday, December 06, 1999 at 22:05:24 (EST)
Name:Robert. Email: <bbfobfan@gnt.net>
Location:Fort Walton Beach, Florida USA
Date of First Histo Occurence:Dec. 1995
Affected Eyes:Both
Other Stresses at Those Times:
Laser Surgeries:. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:
Nutritional Supplements:
Vision Products Used:
Additional Comments:
Date: - Monday, December 06, 1999 at 21:41:03 (EST)
Date of First Histo Occurence:
Affected Eyes:
Other Stresses at Those Times:
Laser Surgeries:. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:
Nutritional Supplements:
Vision Products Used:
Additional Comments:
Date: - Monday, December 06, 1999 at 16:39:31 (EST)
Name:Bonnie. Email: <BIGJIM11o4@aol.com>
Location:Louisville, KY USA
Date of First Histo Occurence:Jan, 1999
Affected Eyes:right
Other Stresses at Those Times:Death in the family.
Laser Surgeries:one. Results:Stopped the bleeding, but have lost almost all reading vision in eye.
Sub Macular Surgeries:none. Results:
Other Medical Treatment:
Nutritional Supplements:No, Would it help?
Vision Products Used:No, just a magnifying glass when needed.
Additional Comments:I would like to talk to others with histo. I've enjoyed reading the messages.
Date: - Monday, November 29, 1999 at 21:56:03 (EST)
Name:James R. Wyrosdick. Email: <bama2@earthlink.net>
Location:Salem, Alabama USA
Date of First Histo Occurence:09-27-99
Affected Eyes:both
Other Stresses at Those Times:usual
Laser Surgeries:3. Results:The first two were hot laser the third was cold laser done at Emory U.11-15 seems to be some changes hard to tell if good or bad,go back to Emory 12-06
Sub Macular Surgeries:n/a. Results:n/a
Other Medical Treatment:n/a
Nutritional Supplements:vitamines,green tea,blueberrys,&antidoxents
Vision Products Used:n/a
Additional Comments:Good luck to anyone with this.Would like to talk with anyone with this in eastern part of Alabama or west Georgia.
Date: - Monday, November 29, 1999 at 19:21:42 (EST)
Name:golden girl. Email: <ontna@sprint.ca>
Location:Kingston, Ontario Canada
Date of First Histo Occurence:Sept 91
Affected Eyes:right only
Other Stresses at Those Times:taking coursed at community college and work
Laser Surgeries:2. Results:as always left with permanent damage but no further bleeds
Sub Macular Surgeries:. Results:
Other Medical Treatment:none
Nutritional Supplements:vitimins only
Vision Products Used:no
Additional Comments:have lost all depth perception
Date: - Saturday, November 27, 1999 at 08:35:38 (EST)
Name:Denise . Email: <dbungartz@webtv.net>
Location:La Croose, La Crosse USA
Date of First Histo Occurence:01/18/1999
Affected Eyes:right
Other Stresses at Those Times:none
Laser Surgeries:2. Results:"too aggressive" "can not be stopped"
Quotes from my retina specialist
Sub Macular Surgeries:. Results:
Other Medical Treatment:none
Nutritional Supplements:multi vitamin
Vision Products Used:no
Additional Comments:
Date: - Wednesday, November 24, 1999 at 15:54:10 (EST)
Name:Denise Bungartz. Email: <dbungartz@webtv.net>
Location:La Croose, La Crosse USA
Date of First Histo Occurence:01/18/1999
Affected Eyes:right
Other Stresses at Those Times:none
Laser Surgeries:2. Results:"too aggressive" "can not be stopped"
Quotes from my retina specialist
Sub Macular Surgeries:. Results:
Other Medical Treatment:none
Nutritional Supplements:multi vitamin
Vision Products Used:no
Additional Comments:
Date: - Wednesday, November 24, 1999 at 15:53:31 (EST)
Name:Carol. Email: <cluv@northnet.org>
Location: New york USA
Date of First Histo Occurence:may 97
Affected Eyes:Left
Other Stresses at Those Times:menieres disease. found out in december of 97 that i had heart disease also.
Laser Surgeries:one may 97. Results:i have a blurr spot in left eye.
Sub Macular Surgeries:none. Results:
Other Medical Treatment:
Nutritional Supplements:I take muti vitamin . cardiologists orders
Vision Products Used:
Additional Comments:
Date: - Sunday, November 14, 1999 at 22:23:45 (EST)
Name:Sue. >
Location:Vancouver, British Columbia Canada
Date of First Histo Occurence:August 1983, then age 20
Affected Eyes:both - legally blind since '88
Other Stresses at Those Times:In most cases, my histo problems were preceded by stress and a feeling of being rundown. When I am under stress now, I remind myself of the possible consequences - which of course, just makes me more stressed...
I am from Montreal (moved to Vancouver in '90) which is apparently full of histo, but I have never met anyone else aside from doctors who has even heard of histo.
Laser Surgeries:2. Results:The bleeding was stopped. My left eye was lasered pretty much dead center (1988), and immediately adjacent (1993). I had another active histo spot on the optic nerve (later in 1993), but was advised not to have it lasered for fear of losing all my vision. That particular situation resolved itself. My right eye has never been treated and has a massive scar over the macula (1983).
Sub Macular Surgeries:none. Results:(had never heard of this before seeing this site)
Other Medical Treatment:Have so far tried prednisone (60mg/day) 3 times without any benefits whatsoever. I will flatly refuse to take the stuff again.
Nutritional Supplements:multivitamins when I feel rundown
Vision Products Used:I use a large screen monitor and large fonts. I do have low vision aids such as small binoculars, reading glasses and magnifiers, but I rarely use them.
Additional Comments:My initial reaction to becoming legally blind was to start a torrid love affair (with a man who is now my husband) and then run off to Europe to do the backpack thing for four months. I recommend this wholeheartedly - nothing like solo travel to learn self-reliance. I quit my job as a market analyst and eventually decided to return to school to get a BFA. We recently started a publishing company, and our fisrt book is doing well. My screen saver says "work hard" - in big letters of course - and this, for me, is the best way to cope with histo. I've been moved by your stories and relate to them all. Thank you all for sharing. As I am losing vision once again, it makes me feel better to know that I am part of a community who understands exactly what histo is all about.
Date: - Sunday, November 14, 1999 at 00:06:32 (EST)
Name:Kerry Jamerson. Email: <kjamerso>
Location:Aurora, Il USA
Date of First Histo Occurence:3 Nov 99
Affected Eyes:Right
Other Stresses at Those Times:Flu like symptoms a few weeks before, even though I had a flu shot. Lungs showed calcuim granules (something like that) indicating some infection had taken place.
Laser Surgeries:. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:
Nutritional Supplements:
Vision Products Used:
Additional Comments:
Date: - Friday, November 12, 1999 at 12:51:49 (EST)
Name:Kirsten Wilson. Email: <Kiluwi@aol.com>
Location:Del Mar, California USA
Date of First Histo Occurence:July 1994
Affected Eyes:Left 20/200 Rt 20/400
Other Stresses at Those Times:A divorce and later went back to school.
Laser Surgeries:I have had several laser treatments. Results:Good resluts at the beginning. My left eye vision went from 20/200 to 20/25 but regressed two years later. Good results in right eye also until it too regressed.
Sub Macular Surgeries:3. Results:The first surgery on the left eye proved fruitless. There was far too much scarring and the vision has remained stable at 20/200-20/300 since 1998. I had my last two submacs un March and OCt. of this year. The right eye in the first surgery in March stabilized to 20/80 from 20/200 and held until October when it dropped again to 20/100 - 20/200. I have been post-op for four weeks now and results are not conclusive.
Other Medical Treatment:Along with the submac in October 1999 I also had a foveal translocation
Nutritional Supplements:No - I had started taking Ocuvite vitamins. As a norm I eat fairly helathy, lots of vegetables, fruit etc.
Vision Products Used:I have recently purchased two magnifying flourescent lamps and found them exceedingly helpful before the surgery in October. The high lighting is the most beneficial. I also purchased a hand held magnifier which I use only rarely as it is somewhat awkward and gives such a limited field of view.
Additional Comments:I would love to be helpful in any way possible!
Date: - Wednesday, November 10, 1999 at 03:01:59 (EST)
Name:Helen Boddington. Email: <H_Boddington@xtra.com.nz>
Location:Christchurch, South Island New Zealand
Date of First Histo Occurence:Nov 1995
Affected Eyes:both (right 95, left 97)
Other Stresses at Those Times:miscarriage, viral conjunctivis
Laser Surgeries:. Results:
Sub Macular Surgeries:, left eye only. Results:spectactular, although it took about 18 months to settle. Went from being classified as legally blind to being able to drive again
Other Medical Treatment:just antibiotics and anti inflam steroids after the surgery
Nutritional Supplements:no
Vision Products Used:no
Additional Comments:I consider myself fairly lucky, especially after reading some of th other survey entries. My right eye was mis-dianosed and not treated. A second opinion was sought when the same symptoms occured in my left eye. This disease is rare in NZ, in fact I was only the second person they had seen with POHS in 6 years. I am greatful that macular surgery was available to me as I understand the laser has a higher incidence of reoccurance. Still it is early days and I am under constant watch with check-ups every 6 months. No explanation as to how I may have picked this up???
Date: - Tuesday, November 09, 1999 at 06:23:40 (EST)
Name:Laura James. Email: <casey3363>
Location:Montgomery, Louisiana USA
Date of First Histo Occurence:December 1992
Affected Eyes:Both
Other Stresses at Those Times:Graduating from college;having 3 children VERY close together, unhappy marriage, divorce, new job, new home, remarriage, legal problems with ex-husband (MUCH STRESS!) Question: Have ohs occurrences been shown to be related to stress factors?
Laser Surgeries:Three. Results:Left eye-finger count
Right eye-vision has continued to decrease. Laser has only slowed the vision loss. Still have pin hole of about 20/40 in right eye
Sub Macular Surgeries:None. Results:
Other Medical Treatment:Am currently taking steriods (oral and drops) inorder to avoid Sub. Mac. surgery. Will know outcome November 11
Nutritional Supplements:No. I have read a few things about what may help, but I guess I wonder if any of it has been proven to help in the controlling/improvement of ohs.
Vision Products Used:No. I am still currently teaching school and I am really struggling! I have wondered what aids would be available to me that might enable me to keep working. The only problem-I teach English and at some point I will have to be responsible for grading papers, maintaing records, etc. Don't know if there are aids to help me do this.
Additional Comments:I realize that I'm not the only one to feel this way - but what a kick in the butt! I try so hard not to be angry, but I am. I put myself through college to become a teacher and I'm a good teacher. So now I find out that the very thing I worked to accomplish I won't be able to do! Even worse - my family. My children are ages 3, 5, & 6. My heart breaks at the thought of them saying, "Hey, mama, can you take us to Mac Donald's?" "No, Mama can't see to drive." "Mama, can you read this book to me, or help me with my spelling words?" "No, Mama can't see." Sometimes I just wish I would loose my vision and be done with it. I'm so very tired of this "cat and mouse" game. I want to know what I'm going to have to deal with and atleast be able to start dealing with it. I am exhaused of living my life on the edge - waiting for the next doctor's visit. In my heart though I have to believe that there is a reason for this - I must become a better person because of this. As a Christian, I know that God did not cause this to happen to me, but he did ALLOW it to happen to me. My only question is now - what is he trying to conform me into. What am I suppose to become because of this. As much anger as I have, I do know that there is so much more to this than I see with my eyes. In the long run this must work for the good. Please feel free to contact me at Casey3363@yahoo.com. Thanks
Date: - Tuesday, November 02, 1999 at 11:08:47 (EST)
Name:Daniel Haase. Email: <dhaase55@netconx.net>
Location:Masoc City, Iowa USA
Date of First Histo Occurence:
Affected Eyes:
Other Stresses at Those Times:
Laser Surgeries:. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:
Nutritional Supplements:
Vision Products Used:
Additional Comments:Forgot to add my email first time around-sorry
Date: - Wednesday, October 27, 1999 at 17:28:39 (EDT)
Name:Daniel
Location:Mason City, Iowa USA
Date of First Histo Occurence:1985
Affected Eyes:Both
Other Stresses at Those Times:No
Laser Surgeries:Three. Results:Stopped the bleeding-vision got better for awhile.
Sub Macular Surgeries:None. Results:N/A
Other Medical Treatment:Just drops and pills
Nutritional Supplements:No
Vision Products Used:No
Additional Comments:Hoping my one good eye,which does have histo spots, hangs in there for me.
Date: - Wednesday, October 27, 1999 at 00:18:11 (EDT)
Name:Andrea. Email: <andrea.denney@fvhr.org>
Location:Chilliwack, British Columbia Canada
Date of First Histo Occurence:Oct. 97
Affected Eyes:both-only one active
Other Stresses at Those Times:Got married spring 97, husband went back to school full time fall 97, brother died spring 96. In general do not feel stressed.
Laser Surgeries:. Results:N/A
Sub Macular Surgeries:1. Results:Theoretically the surgery was successful, but obviously something went wrong as I lost ALL vision in my left eye.
Other Medical Treatment:no
Nutritional Supplements:multi vitamin (now pregnant)
usually ocu-vite, bilberry
Vision Products Used:no
Additional Comments:I work in the Fraser River Valley, in a small farming community. I am involved in soils work on properties/farms in the area. I have filed for worker's compensation, been rejected and am now appealling. Reason - they say histo is only in the "histo belt"/mid-west, not in western Canada (or north western USA). I grew up in the city of Vancouver, and only moved here in 1992 to work. Has anyone else contracted this disease through work? Did you receive compensation? Has anyone had unsuccessful surgery (lost all vision). I would love to hear from others as this seems to be unheard of in this part of Canada.
Date: - Tuesday, October 19, 1999 at 20:34:05 (EDT)
Name:AK. Email: <Ladisk@aol.com>
Location:Denver, co USA
Date of First Histo Occurence:
Affected Eyes:
Other Stresses at Those Times:
Laser Surgeries:. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:
Nutritional Supplements:
Vision Products Used:
Additional Comments:
Date: - Monday, October 11, 1999 at 13:24:35 (EDT)
Name:JD. Email: <iron_52@hotmail.com>
Location:st.louis, missouri USA
Date of First Histo Occurence:may 1999
Affected Eyes:right
Other Stresses at Those Times:ARMY
Laser Surgeries:4. Results:THE HISTO ACTUALLY GOT WORSE AFTER SURGERY
Sub Macular Surgeries:. Results:N/A
Other Medical Treatment:N/A
Nutritional Supplements:NO
Vision Products Used:NO
Additional Comments:I JOINED THE ARMY IN NOV 94 WITH NO EYE PROBLEMS. I NOTICED THE HISTO IN MAY 99, I WAS MISS DIAGNOSED WITH TORN RETINA. I'M STATIONED IN GERMANY AND HAVE DEPLOYED TO PLACES IN THE BALKANS. MY ARMY DOCTORS TOLD ME THIS IS MY PROBLEM THAT I HAD THIS DISEASE MY WHOLE LIFE WELL I HAD EYE CHECK UPS WHEN I FIRST CAME IN THE ARMY AND WAS GIVEN THE RATING OF 20/20 IN BOTH EYES NOW I'M GETTING READY TO ETS AND I'M GOING TO A MEDICAL EVALUATION BOARD TRYING TO GET SOME DISABILITY I WAS GOING TO BE A COP BUT NOW THEY SAID THEY COULDN'T HIRE ME BECAUSE OF MY EYE AND NOW THE ARMY IS SAYING I WONT GET ANYTHING AND IF I DO GET SOMTHING IT WILL BE 10% OF MY PAY AND I GET PAID A MONTH $1400.00 10% IS ONLY AROUND $140.00 A MONTH NOT TO FORGET I'M MARRIED AND IT'S IMPOSSIBLE TO SO THE ARMY HAS SAID SORRY THIS IS YOUR PROBLEM. THE ARMY HAS SAID ITS BECAUSE I COME FROM MISSOURI WELL NEVER HAD THE PROBLEM UNTIL I CAME IN THE ARMY AND WENT TO THE BALKANS.
Date: - Friday, October 08, 1999 at 17:05:31 (EDT)
Name:ANN. Email: <TEAR2MANY@AOL.COM>
Location:ANDERSON, MO USA
Date of First Histo Occurence:1984
Affected Eyes:BOTH
Other Stresses at Those Times:
Laser Surgeries:10. Results:LEGALLY BLIND. ONLY SMALL AREA IN LEFT EYE HAS ANY VISION.
Sub Macular Surgeries:. Results:
Other Medical Treatment:N/A
Nutritional Supplements:NO
Vision Products Used:YES.. HAVE ZOOMTEX PLUS FOR COMPUTER FOR DOCUMENT READING AND ALSO HAVE DIGITAL MAGNIFIER FOR TV FOR READING
Additional Comments:THIS DISEASE IS JUST NOT CAUSED BY WATER FOWL.. IT ALSO HAS BEEN FOUND IN CHICKEN LITTER ALSO.
Date: - Thursday, October 07, 1999 at 17:38:34 (EDT)
Name:ANN. Email: <TEAR2MANY@AOL.COM>
Location:ANDERSON, MO USA
Date of First Histo Occurence:1984
Affected Eyes:BOTH
Other Stresses at Those Times:
Laser Surgeries:10. Results:LEGALLY BLIND. ONLY SMALL AREA IN LEFT EYE HAS ANY VISION.
Sub Macular Surgeries:. Results:
Other Medical Treatment:N/A
Nutritional Supplements:NO
Vision Products Used:YES.. HAVE ZOOMTEX PLUS FOR COMPUTER FOR DOCUMENT READING AND ALSO HAVE DIGITAL MAGNIFIER FOR TV FOR READING
Additional Comments:
Date: - Thursday, October 07, 1999 at 17:36:39 (EDT)
Name:ANN. Email: <TEAR2MANY@AOL.COM>
Location:ANDERSON, MO USA
Date of First Histo Occurence:
Affected Eyes:
Other Stresses at Those Times:
Laser Surgeries:. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:
Nutritional Supplements:
Vision Products Used:
Additional Comments:
Date: - Thursday, October 07, 1999 at 17:30:56 (EDT)
Name:Stacy Mc Mullen. Email: <Skatr62367 @aol.com>
Location:Columbus, Ohio USA
Date of First Histo Occurence:March of 1998
Affected Eyes:Left
Other Stresses at Those Times:
Laser Surgeries:1. Results:As a result, my vision started to clear up but on my 2nd visit 3weeks after the surgery my vision began to get worse again.
Sub Macular Surgeries:1. Results:As a result, my vision started to clear up but on my 2nd visit 3weeks after the surgery my vision began to get worse again.
Other Medical Treatment:
Nutritional Supplements:
Vision Products Used:no. because the vision in my left eye is to far gone for anything to help it.
Additional Comments:
Date: - Thursday, October 07, 1999 at 13:11:41 (EDT)
Name:Lisa Evans. Email: <Voluntrfir@aol.com>
Location:Athens, Alabama USA
Date of First Histo Occurence:1987
Affected Eyes:mainly left
Other Stresses at Those Times:I work for the post office! Enough said!
Laser Surgeries:. Results:n/a
Sub Macular Surgeries:. Results:n/a
Other Medical Treatment:none
Nutritional Supplements:none
Vision Products Used:none
Additional Comments:I was diagnosed in 1987 with histo but my vision cleared up before the retina specialist could even examine me. I haven't thought anymore about it to be honest till Monday, September 27th. Woke up and the central vision was gone in the left eye. Spent 3 days at the dr's office doing all the tests to be told my central vision had been affected, like I didn't know that already. No surgery would be helpful. I would get used to it in 6 to 12 months. My problem seems to be my job. I deliver a mail route for a living and the loss of central in my left eye has really been a change!
Date: - Wednesday, October 06, 1999 at 09:39:04 (EDT)
Name:David Allen Dodds
Location:Dallas, Texas USA
Date of First Histo Occurence:11/5/96
Affected Eyes:Primarily left
Other Stresses at Those Times:As a "type A" person, I am always a bit stressed about something. However, the initial onset in my left eye occurred in November 1996 shortly after I had started a new job as an attorney for a large Dallas law firm.
Laser Surgeries:. Results:n/a
Sub Macular Surgeries:1. Results:Vision did not improve, but CNV membrane that was removed has not returned.
Other Medical Treatment:n/a
Nutritional Supplements:At times I have taken various ocular multi-vitamins.
Vision Products Used:n/a
Additional Comments:The last day of my life with perfect vision was on November 4, 1996, when I was 27. On that day I noticed a spot in my eye, which lead me to see a retina specialist who said that I had "myopic degeneration" (I have always been extremely myopic--something like a -9.5 in glasses and contacts). The doctor said that I had a hemmorage/leakage in my left eye that was too close to the macula for laser treatment. I was not satisfied with this answer and sought the advice of several other retina specialists, including Dr. Jim Folk at the University of Iowa and Dr. David Callanan of Texas Retina Associates. Dr. Folk and Dr. Callanan diagnosed me as having either "punctate inner choroidopathy" or "presumed ocular histoplasmosis" and recommended submacular surgery for my left eye. Dr. Callanan performed the surgery in April 1998. By that time, the vision in my left eye had deteriorated to somewhere between 20/100 and 20/200 because of the CNV membrane in my macular region. The surgery did not improve the sight in my left eye, but to date there is no sign that the CNV has grown back. The vision in my right eye is still in tact--I have a small scar much farther from my macula that affects only my peripheral vision. Like some many other people listed on this website, this eye problem has fundamentally changed my outlook on life. One final question: It seems that POHS has been getting a little more attention within the last couple of years. Is this because of the Internet, or is it possible that POHS is becoming more endemic for some unknown reason?
Date: - Sunday, September 26, 1999 at 15:17:21 (EDT)
Name:Jean Taylor. Email: <trippshome@blomand.net>
Location:Beechgrove, TN USA
Date of First Histo Occurence:6/76
Affected Eyes:both
Other Stresses at Those Times:At the time I was "back to nature" farming with minimal elec., no plumbing and hundreds of animals to care for inc. about 100 chickens...
Laser Surgeries:. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:The Doctor simply handed me an Amsler Gris (I have bad floaters that cropped up with a pregnancy at 43 last year) and said, Look at this.
Nutritional Supplements:Not presently.
Vision Products Used:N/A
Additional Comments:My husband has Toxoplasmosis, apparently from birth, and was treated vigorously by the exact same physician (a supposedly reknowned expert)...yet, my histo was poo poo'ed as something common and non-worrisome.
Date: - Sunday, September 19, 1999 at 18:46:00 (EDT)
Name:mimi. Email: <chocolatebymimi@yahoo.com>
Location:Baltimore, md USA
Date of First Histo Occurence:July 1992
Affected Eyes:both
Other Stresses at Those Times:Job Stress,Asthma--I had food poisoning one week before an occurrence (that was after 5 years of no occurrences).
Laser Surgeries:10. Results:So far so good. no leakage for 6 weeks
Sub Macular Surgeries:none. Results:n/a
Other Medical Treatment:
Nutritional Supplements:Multivitamin,iron supplement. I just began using protein powder to create a balance at each meal of carbs/protein.
Vision Products Used:Yes. I have a 19" computer screen and use a huge font. Also I use a hand magnifying glass and magnifying glasses over my contacts. Also a 60 watt bulb in a good neck lamp over the shoulder or the "better" eye. My Low vision doc has suggested "telescopes" glasses over my contacts (kind of like surgeons glasses). I've tried them in her office and they are very cool. Pricey--But they make reading street signs possible when driving.
Additional Comments:I am a patient at Glaser-Murphy Retina treatment center where they do the new laser surgery. They use a dye enhanced cold laser to seal off the "feeder" vessel that leads to the leak. After having 5 lasers the old way in '92-'93 I have to tell you it is amazing to see the "blood/fluid" spill slowly dissipate. It's wonderful to slowly be able to "see" things better instead of "seeing" a bigger scar.
Date: - Thursday, September 16, 1999 at 17:25:05 (EDT)
Name:Lori Roa. Email: <ROA5@iol14.com>
Location:Tampa, FL USA
Date of First Histo Occurence:summer 1994
Affected Eyes:both
Other Stresses at Those Times:My first experience was at a stressful time in my life. I am not currently under any stress.
Laser Surgeries:none. Results:n/a
Sub Macular Surgeries:none. Results:n/a
Other Medical Treatment:no treatment. I take a couple of pain killers as soon as my vision first gets fuzzy in hopes that it will head off the pain. This seems to help. I also try to rest my eyes.
Nutritional Supplements:Multivitamin, Vitamin E, Beta Carotin, Selenium
Vision Products Used:I wear glasses for reading.
Additional Comments:Occurences have started to increase. I have not been officially diagnosed but have spoke to an optometrist who said "sounds like occular migraines", he didn't seem concerned but did suggest I have an exam which I intend to do. The reason for my present concern is that I would get them as seldom as once a year and I have had two this week. I would like to know what is the cause?
Date: - Wednesday, September 15, 1999 at 13:20:16 (EDT)
Name:Donna. Email: <Delight245@aol.com>
Location: Kentucky USA
Date of First Histo Occurence:September 12, 1999
Affected Eyes:Left
Other Stresses at Those Times:none
Laser Surgeries:none. Results:
Sub Macular Surgeries:none. Results:
Other Medical Treatment:no
Nutritional Supplements:no
Vision Products Used:
Additional Comments:I have just been diagnosed with this disease. It is active right on my left macula. No surgery will be helpful. I'm still in shock and not sure what to add to this forum
Date: - Tuesday, September 14, 1999 at 18:52:48 (EDT)
Name:Lee Ann. Email: <MerryMoon7@AOL.com>
Location:St. Louis, MO USA
Date of First Histo Occurence:Feb 1992
Affected Eyes:both
Other Stresses at Those Times:Stress, yes.... but not medical problems
Laser Surgeries:3. Results:Right eye successfully quiet since 1992. Left eye quiet after two lasers from 1996 until now (Sept. 1999)
Sub Macular Surgeries:zero and counting down. Results:
Other Medical Treatment:am presently on steroids, but doubt they will help.
Nutritional Supplements:metabolife
Vision Products Used:no. My central vision is good in the right eye and compensates nicely.... so far.
Additional Comments:OHS is a spooky disease. You never know when it will strike, and how devastating the damage will be. As anyone with OHS would ask..... WHY ME? I's like someone to find the answer to that question.
Date: - Tuesday, September 14, 1999 at 14:32:09 (EDT)
Name:Suzanne Magnier. Email: <Suzanne.Magnier.hunhcare.co.uk>
Location:Luton, Bedfordforshire England
Date of First Histo Occurence:January 1999
Affected Eyes:Right, both scarring in both
Other Stresses at Those Times:I had graduated within the previous six months, and was finding it difficult to enter my chosen field, thankfully I have now succeeded. My brother died three years ago, but in reality I have always coped well with stress
Laser Surgeries:one. Results:Vision did improve but I still have blind spots in my right eye. Reading is sometimes difficult and I have to refocus and at times I have got into the habit of closing my right eye and looking through my left only
Sub Macular Surgeries:None, not suitable.. Results:
Other Medical Treatment:No
Nutritional Supplements:No
Vision Products Used:I have always been shortsighted, and have needed glasses since I was 10 years old (I am now 26)Because of the Lazer treatment my prescription for my glasses and contact lenses has to be increased.
Additional Comments:I know my goegraphical location is different form everyone esle in this survey but many of the symtoms sound so familiar to me. I grew up in Ireland and have been living in the UK for four years. At the time I noticed my distorted vision I had recently returned from Ireland although my Consultant said I may have had this condition for some time. After 2-3 wrong diagnosis, it was confirmed as POHS.After answering many questions with regard to where I had traveled within the last three years( the only place was New York in March 1998)and various other health issues( my health and immune system are good, I was treated by a Consultant from Cambridge, who had seen and treated the condition in american officers stationed in Cambridge, England. ( and no I have never had any liason with an officer. After reading this site I have been taken by surprise. I did not know it could get so bad and I know nothing about nutritional supplements that could be helpful. At the moment I have adjusted quiet well and I can just hope and pray it does not return of get any worse. Am I being naive
Date: - Friday, September 10, 1999 at 07:21:51 (EDT)
Name:Suzanne Magnier. Email: <Suzanne.Magnier.hunhcare.co.uk>
Location:Luton, Bedfordforshire England
Date of First Histo Occurence:January 1999
Affected Eyes:Right, both scarring in both
Other Stresses at Those Times:I had graduated within the previous six months, and was finding it difficult to enter my chosen field, thankfully I have now succeeded. My brother had died three years previous, but in reality I have always coped well with stress
Laser Surgeries:one. Results:Vision did improve but I still have blind spots in my right eye. Reading is sometimes difficult and I have to refocus and at times I have got into the habit of closing my right eye and looking through my left only
Sub Macular Surgeries:None, not suitable.. Results:
Other Medical Treatment:No
Nutritional Supplements:No
Vision Products Used:I have always been shortsighted, and have needed glasses since I was 10 years old
Additional Comments:
Date: - Friday, September 10, 1999 at 06:49:42 (EDT)
Name:Susan. Email: <pax@bellsouth.net>
Location:Spartanburg, SC USA
Date of First Histo Occurence:diagnosed 1987
Affected Eyes:both
Other Stresses at Those Times:The second breakout occurred several weeks after undergoing eye surgery to correct my nearsightedness.
Laser Surgeries:One. Results:I was able to adapt quickly to the blind spots.
Sub Macular Surgeries:. Results:
Other Medical Treatment:
Nutritional Supplements:I've never heard anything about nutritional supplements and histo, but I do take a multivitamin and glucosamine and chondroiton for arthritis.
Vision Products Used:Eyeglasses. My surgery for nearsightedness eliminated the need for glasses, but then histo struck again -- this time so near my central vision that the doctor could not perform laser surgery. It decreased my vision so much I had to go back to glasses.
Additional Comments:
Date: - Tuesday, September 07, 1999 at 17:15:44 (EDT)
Name:Raina Baker. Email: <rbaker103@aol.com>
Location:Plano, Texas USA
Date of First Histo Occurence:1997
Affected Eyes:Both
Other Stresses at Those Times:Just went through a very ugly divorce.....custody battle. Trying to make it on my own for the first time in my life. After being a stay at home mom for 13 years.
Laser Surgeries:2. Results:The first one didn't get the whole area so it was repeated. Have no more leakage at this time.
Sub Macular Surgeries:. Results:
Other Medical Treatment:Was treated with Sporonox back in 1997. Eye got better. Didn't have any more problems util June of this year. Legally blind in right eye. Just got a new spot in left eye thiw week.
Nutritional Supplements:
Vision Products Used:
Additional Comments:My prayers are with all histo victoms. "Keep lookin up.....cause that's where it all is!!!"
Date: - Saturday, August 28, 1999 at 13:32:05 (EDT)
Name:Terry Brown. Email: <teebs@hotmail.com>
Location:Jackson, OH USA
Date of First Histo Occurence:October 1990
Affected Eyes:Both
Other Stresses at Those Times:Nothing significant
Laser Surgeries:3. Results:Prior to the last occurrence (7/99) my visual accuity was fairly stable at 20/60. I dpn't know what it is at this time, I would guess no better than 20/200, maybe no that good.
Sub Macular Surgeries:. Results:
Other Medical Treatment:I just finished a course of steroids with no improvement.
Nutritional Supplements:Just started antioxidant vitamins, and plan to start taking bilberry extract
Vision Products Used:Not yet, but will be soon.
Additional Comments:I am only hoping that eventally there will be a cure for this condition.
Date: - Friday, August 27, 1999 at 06:51:25 (EDT)
Name:Jim Elwood. Email: <jgelwood@aol.com>
Location:Huntersville, NC USA
Date of First Histo Occurence:Oct. 1997
Affected Eyes:Both
Other Stresses at Those Times:Stressful job
Laser Surgeries:9. Results:The right eye has stabilized after 5 laser surguries with 20/15 vision. There is no distortion in center vision. Left eye has distorted vision after 4 laser surguries. The blank spot in left eye very near the fovea which makes for difficult reading and other activities that require fine tuned vision, but the good news is that I am still able to drive. I have an appointment with my doctor today due to further distortion.
Sub Macular Surgeries:. Results:N/A
Other Medical Treatment:N/A
Nutritional Supplements:Multivitamins, but will trything that anyone recomends that appears (no pun intended) to work.
Vision Products Used:No
Additional Comments:Pretty crappy disease. Hard to participate in sports/reading with my three sons.
Date: - Wednesday, August 25, 1999 at 11:26:11 (EDT)
Name:John Everitt. Email: <johne4783@aol.com>
Location:Jackson, MS USA
Date of First Histo Occurence:December 1996
Affected Eyes:right eye
Other Stresses at Those Times:At time of onset, I was in an extremely stressful job, my mother was dying from lung cancer, and I was looking for a new job.
Laser Surgeries:1. Results:Went from 20/200 in right eye to 20/70, but approximately 2 months later the veins started leaking again.
Sub Macular Surgeries:1. Results:Had submac surgery in April 1997 with Dr. Chen at University Medical Center, Jackson. My vision slowly cleared to 20/70, but broke loose again approximately 2 months later.
Other Medical Treatment:At my dad's urging, I consulted with Dr. Morton Goldberg at the Wilmer Eye Institute in March 99. After a thorough consultation, he told me there was nothing that could be done for my right eye at this time. My dad had insisted I go because he had seen the article in USA Weekend about the surgeries Wilmer was pioneering (retinal relocation) and detachment surgery. The scarring and leaking now covers about 90% of my central vision, and Dr. Goldberg said the chances of success were not good. Am hopeful about the PKC 412 drug awaiting trials next year.
Nutritional Supplements:Green Tea, multivitamin with chromium picolinate for weight loss.
Vision Products Used:Nothing at present. Vision in my left eye is 20/20 (I do have some very minor scarring in that eye, but none anywhere close to the retina.
Additional Comments:This group simply must schedule a face to face meeting for all--too much valuable information being passed along here--would really like to meet some of these folks!!!
Date: - Sunday, August 22, 1999 at 23:17:37 (EDT)
Name:Bill Cope. Email: <WC6692@WAMUSA.COM>
Location:Litchfield, Illinois USA
Date of First Histo Occurence:1994
Affected Eyes:both
Other Stresses at Those Times:I work in a very high stress level position, dispatching for a trucking company and working in customer service
Laser Surgeries:2. Results:Lasre was done in 1994 on right eye, this held until recently when I had to have it done again in the right eye in July 1999
Sub Macular Surgeries:1. Results:Submac was done on my left eye in June 1998 this corrected my vision from 20/200 to 20/70
Other Medical Treatment:I was given prednisone in the later part of 1997 for the left eye, this corrected the problem only temporarilly, I later had to have the submac in June 1999. Also when I was first diagnosed with histo in 1994 I was put on sporanox for several months. In March I had cataract removal and lense emplant done on the left eye. This corrected my vision to 20/30 and is still holding at that. I was also put on prednisone in the later part of 1997 for this.
Nutritional Supplements:None
Vision Products Used:I only wear glasses for reading
Additional Comments: My first occurance with histo was in 1994. I suddenly got great distortion in my right eye. The eye doctor I went to at first thought I had detached the retina as I was doing some very heavy and jarring work while remodeling our home. He sent me to Springfield Clinic where it was diagnosed as Histo. I had the laser treatment done at that time. This fully corrected the vision in my right eye to 20/20 with no distortion. I started to get blind spots in my left eye in the later part of 1997. At that time I was put on prednisone. This helped for a while but I later had to have the submac done in June of 1998. I was so intent to get my vision corrected to at least 20/40, because that is as high as it could be for me and get my CDL drivers liscense renewed in April of this year. The doctors said that this would probably not happen. I was told that sometimes submac surgery can cause early developement of cataracts. In march of this year this was confirmed in my case. That is when I chose to have a cataract removal and lense emplant done on the left eye. This corrected my vision to 20/30 in this eye. I have joined a study being one by the Washington University School of Medicine at Barnes Retinal Institute. Hopefully the results will be out at the end of this year. I think one thing that frustrates me so badly is the lack of knowledge on Histo not only for the general public but also for medical professionals as well. I have a niece in her late 20's with histo and an aunt in her late 60's with it and both are told by their doctors that there is nothing to be done and to just live with it. I have advised both to get another doctor. This web site is really a blessing to all of us and I am very grateful for having found it. Every time I go to the eye doctor I pass it along to everyone i see there. I enjoy hearing from others with this so please E mail me at any time. Bill
Date: - Thursday, August 19, 1999 at 09:06:59 (EDT)
Name:Carol Schardt. Email: <Carols10@prodigy.net>
Location:Calabasas, CA USA
Date of First Histo Occurence:Dec. 1991
Affected Eyes:right
Other Stresses at Those Times:My husband died Nov. 1989. I fractured foot Dec. 1989. Co. I worked for was going bankrupt, but I stayed to help clean up and because I had too much on my plate already to deal with. Next summer I went back to Iowa for a high school reunion..stayed on the farm as usual. In Nov. 91 I had an accidental blow to the left side of my head. It was after that, I started seeing gray, smudgy sight in right eye. I got to my opthomologist immediately. He examined and did some tests and called me that Friday night and asked me to meet him at his office on Sat. He did more tezts and got me in to the Jules Stein Eye Institute at UCLA Monday morning to a top retina specialst. There I had a whole battery of tests and an MRI (to determine I didn't have a brain tumor). After hearing about my childhood years, etc. they finally determined it was POHS. I do remember the night of the day my husband died, seeing bright spots in my right eye, but after life calmed down, they went away. I would definitely say stress is a major contributor.
Laser Surgeries:none. Results:
Sub Macular Surgeries:none. Results:
Other Medical Treatment:None. Just routine visits. If I notice any change, I'm to UCLA pronto. I've had one bleeding, coincidentally, after returning from a trip to Iowa two years ago. Dr. says that has nothing to do with it, nor did the blow on my head. I'm not totally convinced of that. On the last Iowa trip, my right eye pained me so much one day I could bearly wear my contacts. To complicate matters, I have cataracts in both eyes.
Nutritional Supplements:Vitamins: E, C, daily, beta caratine, DHEA, ginko. I tried Eyebright, but I felt it was contributing to dryness. Green tea, and for sure blueberries after reading on this site and in the paper about their high level of antioxidants.
Vision Products Used:I wear drug store reading glasses over my contacts, and for really small print, pick up the magnifying glass.
Additional Comments:After each occurrence with time my eyesight improved. When concentrating with myeyes shut, I see the black shaped spot which looks like a cat's head with two years. My last bleed extended one of the ears. I'm trying to stay free of stress. I was laid off of my job 4 mths ago and just this month (Aug) I started a new job. I quit after one week because I realized I couldn't spend 11 hrs a day working on a computer, altho in the long run there would be interruptions from that. However, my eye strain was so bad, by that Fri. night my vision in the right eye had really declined and my eye was throbbing. I'm curious if anyone experiences some sort of pain with stress or overwork of eye strain? My dr. commented once that the eye wouldn't create pain. All I know, is something was creating it behind or on top of the eye. I've been a histo groupie since the page first came out. Always enjoy reading the comments and have learned a vast amount of information, much of which I copy and take to my dr. I must say, however, my dr. does keep up on all the latest as well as be in touch with other top retina specialist across the country.
Date: - Wednesday, August 18, 1999 at 16:17:50 (EDT)
Name:Lisa Dreifuerst. Email: <ldreifuerst@foth.com>
Location:Madison, WI USA
Date of First Histo Occurence:May 1997
Affected Eyes:Left only
Other Stresses at Those Times:No additional stress that I can relate to the initial onset or reoccurance
Laser Surgeries:. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:Prednisone
Nutritional Supplements:no.
Vision Products Used:no.
Additional Comments:Had a flare up in the last few weeks. Trying prednisone again for a month then possibly looking at sub mac surgery.
Date: - Wednesday, August 18, 1999 at 14:49:16 (EDT)
Name:Pamela Reed. Email: <pkreed@siu.edu>
Location:Carbondale, IL USA
Date of First Histo Occurence:January 1979
Affected Eyes:both
Other Stresses at Those Times:Definite high-stress environment in graduate school. At the first occurrence of POHS, I was incredibly stressed out. At the same time my allergies, which had been few, dramatically increased in number (both inhalants and food allergies).
Laser Surgeries:3. Results:All three were in same eye. Numbers 2 and 3 were within one month. Apparently successful.
Sub Macular Surgeries:. Results:
Other Medical Treatment:Other than being given prednisone for years, nothing else was done. All my medical problems now appear to relate to the immune system: allergy shots; chronic sinus infections; chronic ear infections (hey, how many 44 year olds have tubes?!); 8 years after stopping prednisone, I'm still fighting the effects!
Nutritional Supplements:Drinking green tea
Vision Products Used:
Additional Comments:I'm currently a subject in a study at Barnes Retina Institute. In simple terms, they believe that there is a genetic link to the severe form of the disease that most of us have. The results of the study should be out by the end of 1999.
Date: - Monday, August 16, 1999 at 18:08:45 (EDT)
Name:Hope. Email: <JustAll4Fun@worldnet.att.net>
Location:Philadelphia, Pennsylvania USA
Date of First Histo Occurence:July of 1986
Affected Eyes:both
Other Stresses at Those Times:No other medical problems. Some what stressfull for a 33 yr old. Husband died in 85 and every thing lost in a fire 10 months later.
Laser Surgeries:5. Results:Compared to blindness, the results are excellent!
Sub Macular Surgeries:. Results:
Other Medical Treatment:Just the laser treatments.
Nutritional Supplements:No
Vision Products Used:Magnified glasses and large fonts on the PC
Additional Comments:My retinal specialist is DR Steven Sinclair who is well known for his studies and teaching around the world. I started to see him when he was at Shea Eye Institute, followed him to Hanahman hospital and now to Crozer-Chester where he has been for the last few years. Thank God that hospital supplies him with the necessary equipment and up to date too. DR Sinclair has taken care of me since 1986 and has done beautiful laser surgery on both my eyes. All of the active lesions that he has had to laser have not leaked again. He's got great aim, ey? I have Multifocal Choroiditis, which is very similar to ocular histo. About the only difference is that I have bigger lesions and more of them than histo. The way science moves so fast in our world today, I am very confident that a cure or fix will be within my lifetime (hopefully) or very soon thereafter!
Date: - Saturday, August 14, 1999 at 12:21:05 (EDT)
Name:Janeen Drane. Email: <janeen@skyenet.net>
Location:Knox, IN USA
Date of First Histo Occurence:September 1996
Affected Eyes:Right
Other Stresses at Those Times:Nursing school
Laser Surgeries:2. Results:Results #1 - 20/80 vision from 20/15 with a large black spot - residual bleeding around the photocoagulation site
Results#2: the bleeding has stopped, but zero central vision. Visual acuity, right eye 20/400
Sub Macular Surgeries:. Results:
Other Medical Treatment:I was refused Submacular Surgery Trials because I had received laser treatment #1 before being evaluated. I was told by Northwestern University Dr. that I no longer had enough macula to save with the procedure.
Nutritional Supplements:OcuVite
Vision Products Used:None
Additional Comments:
Date: - Monday, August 09, 1999 at 16:28:08 (EDT)
Name:Dorothy Bates. Email: <bates-3@medctr.osu.edu>
Location:Columbus, Ohio USA
Date of First Histo Occurence:October, 1984
Affected Eyes:left & right
Other Stresses at Those Times:Back 1984 had started a new job in management, it was more stressful than
previous position. Now I have just completed a very stressful year with the
deaths of very close friends and the status of my job was up in the air.
Laser Surgeries:1. Results:This was in 1985 with no reoccurance.
Sub Macular Surgeries:. Results:
Other Medical Treatment:I am currently waiting to have sub macular surgery on August 16, 1999. My retinal
specialist is going on vacation and wants to be in town for my follow-up. He feels
I am stable until that time. I have always had allot of allergies. Over the years
I have had short term treatment with steriods.
Nutritional Supplements:Vitamin E
Vision Products Used:
Additional Comments:
Date: - Thursday, August 05, 1999 at 11:31:32 (EDT)
Name:David Norris. Email: <dnorris@pdq.net>
Location:Houston, TX USA
Date of First Histo Occurence:prior 1/21/70
Affected Eyes:numeroous
Other Stresses at Those Times:On several occasions there was job stress, but more occurred without any discernable cause.
Laser Surgeries:3. Results:Overflow after all.
Sub Macular Surgeries:. Results:
Other Medical Treatment:Photo-documentation of macular blood flow.
Nutritional Supplements:Multivitamin
Vision Products Used:CCTV, monocular, low-vision reading & computer glasses, ZoomText Plus, and 17" monitor @540x480 display.
Additional Comments:Noted hearing impairment subsequent to bilateral vision loss.
Date: - Thursday, August 05, 1999 at 06:06:51 (EDT)
Name:Brita. Email: <heygrams@home.com>
Location:San Diego, CA USA
Date of First Histo Occurence:1980
Affected Eyes:Both
Other Stresses at Those Times:I had just gotten pregnant for the 4th time when the first occurrence happened. I was 29. The 4th occurrance showed up the week I went back to college at age 35. The 5th was just prior to the birth of my first grandchild in 1991.
Laser Surgeries:3. Results:Each time the progress was halted. The first and fifth occurrences were too near the fovea for laser treatment. Each led to legal blindness in the affected eye.
Sub Macular Surgeries:. Results:
Other Medical Treatment:None
Nutritional Supplements:Just multivitamins.
Vision Products Used:I use a CCTV and a text enlargement software.
Additional Comments:Plz add questions: Age of onset, dates of each occurrence, date of legal blindness
Date: - Monday, August 02, 1999 at 16:36:36 (EDT)
Name:Chris lines. Email: <cel@stones.com>
Location:Singapore, Singapore Singapore
Date of First Histo Occurence:1975
Affected Eyes:Both
Other Stresses at Those Times:First occurrence during final college year. Otherwise pretty normal sort of stress levels.
Laser Surgeries:3 maybe 4. Results:Docs claim a succes, but it doesn't help me to see any better.
Sub Macular Surgeries:None. Results:
Other Medical Treatment:
Nutritional Supplements:No. Not yet, anyway.
Vision Products Used:No
Additional Comments:Good to find this site. Has any work been done to formalise these survey results? I was wondering, prompted by the references here to stress levels, if there might be other common factors we are not aware of. I, for instance, contracted histo in England, long before going anywhere near the Miss valley, so can't claim the common ancestry of many here. Other things that occurred to me off the cuff were eating habits, drinking habits, exposure to sun, exercise types and levels, childhood diseases - is it worth following up? I'm happy to do the legwork, maintian data tables, etc, and report anything and everything.
Date: - Monday, July 26, 1999 at 10:43:19 (EDT)
Name:Cindy. Email: <cinadoodie@hotmail.com>
Location:Phoenix, AZ USA
Date of First Histo Occurence:12/95
Affected Eyes:Both
Other Stresses at Those Times:Typical job stresses. In 1995, I was married and became a manager at my job. Both a little stressful.
Laser Surgeries:1. Results:I visited my optometrist after having terrible time driving at night. I pulled over on the way to my company christmas party and started to cry. My husband did not understand. Neither did I. I had been having floaters in my field of vision and it looked like someone had vaseline on their finger tip and put a spot on my eye glass lense. The optometrist saw the lesion and said that he was not the proper person to care for this and sent me to an opthamologist. The opthamologist could not see the spots!!!! I was very insistent and made him look until he saw them. I looked at the grid and drew what I saw on the paper so he would get an idea of where to look. He finally saw the spot, took color photos, then quickly sent me to a retina specialist. (He even tried to charge me for the photos!!!!!) Luckily I just do not roll over and take crap from these doctors. I did not have to pay for the pictures after I called and complained. I saw the retina specialist the same day. I called my husband on his cellular phone, but he did not understand how major this was. He would not even take off work to drive me to the retina specialist. I drove over there with severly impaied vision (due to the dilating drops). I had the fluorescing dye pictures taken and was told that I was going to have to have laser surgery on my eye. I called my husband again and he finally realized that I was serious. I had a difficult time holding my eye still during the surgery, so the doctor had to give me two shots to help immobilize my eye so he could do the surgery. (I had been in the doctor's office for over 7 hours by that time and was ready to just say &%(*-it!, get me outa here!). This surgery was performed at around 6 pm on Christmas Eve 1995. When I went in for my check ups, the nurses that were not even there have heard about me! How special!!! They would say, "Oh you're the one!"
I had the surgery and spent 2 1/2 days waiting for my eye to un-dilate. (By the way, did you know that your pee glows under black light for a couple of days after that flourescing eye test?)
Oh well. I just visited my doctor for my 3 1/2 year check up and the laser is still holding. I worry a lot about a reoccurance as I have about 9 spots total in my eyes. The spots in my other eye are even closer to the macula and need to be watched vigilantly.
Sub Macular Surgeries:. Results:
Other Medical Treatment:None
Nutritional Supplements:I take Gingko Biloba, Chromium Picolinate, and a multivitamin daily. However, I also take a pretty strong dose of amphetamines for weight control daily. I hope these are not causing a problem. I have been taking them since Feb. 1997.
Vision Products Used:Just my regular glasses. I still see almost 20/20 in both eyes with my glasses.
Additional Comments:Thank you all for being there with your stories. I am 30 and feel that I am totally screwed in regards to my vision problems. I feel that I have a life sentence to be eventually blind! I know that you all feel the same way and hope that this is just pessimistic perception.
Date: - Sunday, July 25, 1999 at 21:26:31 (EDT)
Name:Louise Barlow. Email: <weezie1@prodigy.net>
Location:Westfield, Massachusetts USA
Date of First Histo Occurence:First occurance about 19 years ago in my right eye
Affected Eyes:both eyes affected now
Other Stresses at Those Times:Initial occurrance happened at a very stressful time that is too numerous to elaborate on at this point but an example is that I was in my med 30's with 3 children & both of my parents were terminally ill. This recent occurance has come about at a time that is not nearly as stressful as the initial occurance but I realize that the stresses of working & not pacing myself well certainly did not help the situation.
Laser Surgeries:one . Results:Laser surgery done early March on right eye. Left me with a large blind spot to the left of central vision & started to leak again with in a few days.
Sub Macular Surgeries:one. Results:Surgery done on May 5th to same eye. Still in the healing stage but I am regaining sight slowly & doctor very pleased at this point.My left eye is not a candidate for lazer & since my eye sight has remained quite good we have decided to do nothing with that eye at this point.
Other Medical Treatment:
Nutritional Supplements:I am taking a variety of herbs & vitamins. I take a good multivitamin, calcium & mag., vitamin C, beta carotine, vitamin E, lutein (36)mg, Dr. Clayton's Eye Clear (I get this a my health food store)9 tablets a day, 4 or more cups of green tea a day plus mineral tea (this is made up at a local herberium. I have been on these since February plus I have eliminated coffee & added lots of fruits & veggies.
Vision Products Used:Occasionally I use a magnifier if my eyes are particularly tired. I did have my local eye doctor prescribe full lense reading glasses to use until I know how my eyes are going to settle so I will know what I will need in the future.
Additional Comments:Needless to say, this has been the challenge of my life. The frustration of the medical community not being able to give much information regarding the reasons for the flare-ups or why they subside is so scary & frustrating. I have always tride to take reasonable care of myself but this experience has forced me to really look beyond the normal medical field & I am trying very hard to be very aware of myself & how I react. I have additionally , cut my working hours to 30 hrs. a week, I am taking yoga, I'm trying to learn to meditate & I finally got around to starting a flower & herb garden & I have to say a lot of the things I have been putting off until I have more time, are the things I have found I have time for right now. Amazing! The upside of this whole ordeal is that I have lost 12 pounds from my healthy diet & regular walking routine, & physically I feel terrific. I also listen to books on tape because I have always been an avid reader & this has helped fill the gap since reading for any length of time is too frustrating. I still get depressed & frightened if I dwell on things too long but I am learning to accept this as part of my life too. I am very happy I found this site & hope to learn a lot & maybe offer a little encouragement along the way.
Date: - Sunday, July 25, 1999 at 17:09:35 (EDT)
Name:Louise Barlow. Email: <weezie1@prodigy.net>
Location:Westfield, Massachusetts USA
Date of First Histo Occurence:First occurance about 19 years ago in my right eye
Affected Eyes:both eyes affected now
Other Stresses at Those Times:Initial occurrance happened at a very stressful time that is too numerous to elaborate on at this point but an example is that I was in my med 30's with 3 children & both of my parents were terminally ill. This recent occurance has come about at a time that is not nearly as stressful as the initial occurance but I realize that the stresses of working & not pacing myself well certainly did not help the situation.
Laser Surgeries:one . Results:Laser surgery done early March on right eye. Left me with a large blind spot to the left of central vision & started to leak again with in a few days.
Sub Macular Surgeries:one. Results:Surgery done on May 5th to same eye. Still in the healing stage but I am regaining sight slowly & doctor very pleased at this point.My left eye is not a candidate for lazer & since my eye sight has remained quite good we have decided to do nothing with that eye at this point.
Other Medical Treatment:
Nutritional Supplements:I am taking a variety of herbs & vitamins. I take a good multivitamin, calcium & mag., vitamin C, beta carotine, vitamin E, lutein (36)mg, Dr. Clayton's Eye Clear (I get this a my health food store)9 tablets a day, 4 or more cups of green tea a day plus mineral tea (this is made up at a local herberium. I have been on these since February plus I have eliminated coffee & added lots of fruits & veggies.
Vision Products Used:Occasionally I use a magnifier if my eyes are particularly tired. I did have my local eye doctor prescribe full lense reading glasses to use until I know how my eyes are going to settle so I will know what I will need in the future.
Additional Comments:Needless to say, this has been the challenge of my life. The frustration of the medical community not being able to give much information regarding the reasons for the flare-ups or why they subside is so scary & frustrating. I have always tride to take reasonable care of myself but this experience has forced me to really look beyond the normal medical field & I am trying very hard to be very aware of myself & how I react. I have additionally , cut my working hours to 30 hrs. a week, I am taking yoga, I'm trying to learn to meditate & I finally got around to starting a flower & herb garden & I have to say a lot of the things I have been putting off until I have more time, are the things I have found I have time for right now. Amazing! The upside of this whole ordeal is that I have lost 12 pounds from my healthy diet & regular walking routine, & physically I feel terrific. I also listen to books on tape because I have always been an avid reader & this has helped fill the gap since reading for any length of time is too frustrating. I still get depressed & frightened if I dwell on things too long but I am learning to accept this as part of my life too. I am very happy I found this site & hope to learn a lot & maybe offer a little encouragement along the way.
Date: - Sunday, July 25, 1999 at 17:09:05 (EDT)
Name:Lisa Ford. Email: <laford74@hotmail.com>
Location:Decatur, IN USA
Date of First Histo Occurence:9-97
Affected Eyes:Both
Other Stresses at Those Times:Had hysterectomy earlier in the same year. Also at the same time trying to finish my bachelors degree, being married, raising kids.
Laser Surgeries:. Results:
Sub Macular Surgeries:2. Results:Had 1st surgery in left eye 11-97. Good results, vision back to 20/40. Had second surgery 5-98 in right eye. Results not as good. Vision currently at 20/70.
Other Medical Treatment:
Nutritional Supplements:Multi-vitamin, Vitamin E, B-Complex, calcium, magnesium, bilberry, beta carotene. I'm in the process of adding lutein & DHA.
Vision Products Used:No
Additional Comments:My vision isn't too bad right now. I can still work and drive which are very important to me. I have a great doctor and am happy with the results of the two submac surgeries she performed on me. Since the day I was diagnosed with this disease, I have done research to find out everything I can about histo. I think it's really important to take charge of your own health. It's great to have this site in order to share experiences & information!!
Date: - Thursday, July 22, 1999 at 11:45:16 (EDT)
Name:Lisa Ford. Email: <laford74@hotmail.com>
Location:Decatur, IN USA
Date of First Histo Occurence:9-97
Affected Eyes:Both
Other Stresses at Those Times:
Laser Surgeries:. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:
Nutritional Supplements:
Vision Products Used:
Additional Comments:
Date: - Thursday, July 22, 1999 at 11:38:24 (EDT)
Name:Lisa Kaeck. Email: <kaeck@smartor.com>
Location:Atlanta, GA USA
Date of First Histo Occurence:7/8/99 - 1 - 2 weeks ago
Affected Eyes:both
Other Stresses at Those Times:Normal stress which is normally high
Laser Surgeries:none. Results:Not possible for the right eye and not sure yet about the left.
Sub Macular Surgeries:none. Results:
Other Medical Treatment:
Nutritional Supplements:Multi vitamin - extra C - extra magnesium and calcium - will start to take E and whatever else sounds good
Vision Products Used:I've ordered glasses and am not so patiently awaiting their arrival
Additional Comments:I have 9 or more scars in my right eye (one or two in the macula) and I noticed blurring 2 weeks ago. Since then it's gotten worse. The first doctor told me it was a vitreous detachment and to come back in a week for a check up unless it got worse. I've known since I was young that I had "scars" in the back of my eyes, but was never told what they were. They thought I had "lazy eye" and I wore a patch for several years. My left eye has never been better than 20/200 (I thought because of the lazy eye). So I went from 20/20 sight (even with the left eye) to 20/200 in an evening. Weird. I got a second opinion and found out about the histo. It's not the best news I've heard. Apparently (after all these years however) my left eye can be treated with glasses and I should be able to see well again as soon as I get used to them. I also fear my left eye's central vision will some day be effected. Hopefully someone will come up with some successful treatment soon for all of us.... Thanks for the info and the entries.
Date: - Monday, July 19, 1999 at 17:07:06 (EDT)
Name:Diana Goodin. Email: <DGOODIN476@AOL.COM>
Location:Ft. Wayne, Indiana USA
Date of First Histo Occurence:Diagnosed Sept. 1998
Affected Eyes:both
Other Stresses at Those Times:
Laser Surgeries:1 in both eyes last yr.. Results:nOT SURE WHAT i HAD IT FOR.
Sub Macular Surgeries:none. Results:
Other Medical Treatment:
Nutritional Supplements:
Vision Products Used:magnifiers sometimes
Additional Comments:For once I can't wait to see my Dr. so I can get the right answers. I would love to hear from anyone.I'm struggling with the thought of not driving or working anymore. I love this website, thanks Blink
Date: - Sunday, July 18, 1999 at 15:01:31 (EDT)
Name:karen hodge. Email: <hodges@gva.net>
Location:Pearisburg, Va USA
Date of First Histo Occurence:1986
Affected Eyes:Both
Other Stresses at Those Times:One occurance after the birth of my second child, otherwise no other medical problems
Laser Surgeries:4. Results:1st was on my right eye, 3yrs later problem occured at the same place then 2nd laser on the right eye.
3rd 2yrs ago in left eye, then again a reoccurance a few weeks ago and a 4th laser.
Sub Macular Surgeries:none. Results:
Other Medical Treatment:none
Nutritional Supplements:none
Vision Products Used:none
Additional Comments:
Date: - Saturday, July 17, 1999 at 17:21:39 (EDT)
Name:Michael Phipps. Email: <mphipps_esq@yahoo.com>
Location:Dallas, TX USA
Date of First Histo Occurence:Spring 1992
Affected Eyes:both
Other Stresses at Those Times:Parents divorced a year before first occurence. Switched jobs a year
before second occurence.
Laser Surgeries:None. Results:
Sub Macular Surgeries:None. Results:
Other Medical Treatment:For the first occurence I was told to come back if it didn't heal.
For the second, I was put on Sporanox and Prednisone.
Nutritional Supplements:Just started the green tea capsules 300mg daily.
Vision Products Used:None yet
Additional Comments:My first occurence in 92 was left untreated because the doctor's didn't really know anything. So the big black spot left part of my central vision healed and left scar tissue in the shape of a rabbit. My doctor can't beleivw the vision that I still have in that eye. I just had another occurence in my left eye in May. It wasn't as bad as the first occurence. It is in the center of vision. It looks like somebody put a thumbprint on my glasses. My doctor put me on Sporanox and Prednisone. The spot was going away after being on the Sporanox for two months, so she took me off. About two days after I got off the spot came back. So I am now back on the Sporanox and I think it is very very slowly going away again. After ready these entries, I don't think that any type of surgery would be helpful. It seems to eventually make things worse. I did grow up on a farm in Oklahoma and we did have an old chicken house.
Date: - Thursday, July 15, 1999 at 11:12:11 (EDT)
Name:Jacki for Jessica (13 yrs old). Email: <JACKISHOPS@aol.com>
Location:Highland, IN USA
Date of First Histo Occurence:August 1998
Affected Eyes:Right
Other Stresses at Those Times:None-she saw a wavy line in her eye one day and 3 days later could hardly see out of the eye.
Laser Surgeries:1 in August 98. Results:Good results- most vision was regained except for a blind spot in the middle of eye.
Sub Macular Surgeries:2- Dec 98 & June 99. Results:Both surgeries were successful accoding to the retina specialist she sees. Vision restored after the first to the original blind spot- which was a little bigger. Just recovering now-vision is 20/200 in the eye-before surgery she couldn't see the eye chart. Dr. is very hopeful, although warns us it could reoccur again.
Other Medical Treatment:None
Nutritional Supplements:No
Vision Products Used:She currently wears glasses-not so much to see but to protect her other eye-Doctor's suggestion
Additional Comments:Very frightening for my daughter and for our family. We never heard of this prior to her diagnosis. Her doctor mentioned a new laser being tested that should be out sometime in early 2000 if her problem occurs again. He does not want to do surgery again-he is worried about the trauma to the eye with another surgery. Jessica is hoping there will be a cure, or at least more options, if this ever happens to her again!
Date: - Tuesday, July 13, 1999 at 00:45:39 (EDT)
Name:Cindy
Location: Ontario Canada
Date of First Histo Occurence:1987
Affected Eyes:POHS-both, Rx-right
Other Stresses at Those Times:None
Laser Surgeries:1. Results:Vision right eye 20/80 with corrective lenses
Sub Macular Surgeries:1. Results:Surgery May 99 - still waiting to gauge results
Other Medical Treatment:
Nutritional Supplements:No
Vision Products Used:No
Additional Comments:
Date: - Saturday, July 10, 1999 at 15:07:55 (EDT)
Name:Shannon for Anthony. Email: <misy@iquest.net>
Location:Indianapolis, IN USA
Date of First Histo Occurence:approx Early 1997
Affected Eyes:both
Other Stresses at Those Times:None that I can think of other than the usual preteen, teen, school stuff that
kids of that age go through
Laser Surgeries:2. Results:3/97 laser of right eye
fall of 97 laser of left eye
So far the left eye is doing ok
7/6 on a recheck a new spot was found in right eye in the center of the eye. He had a shot of Prednizone in the eye.
Sub Macular Surgeries:. Results:
Other Medical Treatment:Other than the 2 laser surgeries, he had the shot of Prednizone in his right eye.
No one has mentioned that there was anything else that could be done.
Nutritional Supplements:This web site is the first that I have heard about nutritional supplements for histo patients.
Vision Products Used:no
Additional Comments:I have so much to ask. Much of what I have read about in this web site I haven't heard of and I am wondering why. Why haven't his doctors told me that supplements may help or that there were such things that could nurish the eye. I am angry about how to explain to my son that he may never get to live a "normal" life. What else is there about Histo that I don't know? Not to mention the fact that he also has Optical Nerve Drusun. I have yet to met someone with Drusun. Will this continue to develope? I don't mean to sound freaked out about this but from the time Anthony was born keeping him healthy has been a struggle. He was born blue and kept on oxygen for the first few days then turned yellow and had to be placed under a light. He couldn't nurse due to the fact that he had severe food allergies. He was also born with asthma. Both diagnosed within weeks of birth. Then his sinuses joined in and he has has 2 sinus erogations and tubes in the ears twice also. Not to mention his tonsals and andiods being removed when he was under 2 yrs old. Anthony has had unexplainable high temperators. I would notice a fever and go to tylenol and by the time I would get back to him with it his temp would be 104-105. Once he was hospitalized and given large doses of Pinaccilin. Much of the above mentioned he has grown out of. About the only lingering problem has been asthma. The funny thing is you couldn't tell my looking at him that he was ever sick a day in his life. He has played football, baseball and is an avid fishman. I feel that he came into contact with histo when he was a baby or toddler age. Which when looking back may have been the cause of the coughing and fevers. His heart has stopped a few times but that was believed to be a reaction to a food. I keep thinking that there were signs but there was just too much other stuff going on with him. One thing that keeps nagging at me though; If steriods are supposed to help histo then why didn't the high doses he took from the time he was weeks old til he was about 10 help? Or maybe it did and I just don't know it. If anyone has any suggestions I am all ears. His current doctors are at Indiana University Medical Center in Indianapolis, IN. He sees Dr. Ronald Danis for the histo and he sees Dr. Yee for the Drusun. Feel free to email me. misy@iquest.net
Date: - Thursday, July 08, 1999 at 15:30:09 (EDT)
Name:tanya dimmich. Email: <tldimmich@aol.com>
Location:w. lafayette, IN USA
Date of First Histo Occurence:june, l998
Affected Eyes:left
Other Stresses at Those Times:no
Laser Surgeries:. Results:
Sub Macular Surgeries:one, and need another. Results:improved vision for a few months; now it's been 11 months, and there is a recurrence
Other Medical Treatment:no
Nutritional Supplements:no
Vision Products Used:no
Additional Comments:I am filling this out for my daughter, Rebekah, age l5
Date: - Thursday, July 01, 1999 at 22:09:26 (EDT)
Name:Joyce Adams. Email: <joyce@hancock.k12.mo.us>
Location:St. Louis, Mo USA
Date of First Histo Occurence:February 1998
Affected Eyes:Right Eye
Other Stresses at Those Times:High stressful job as secretary to Superintendent of School District. I have always been an easily stressed person.I have had occular migraines (no pain) but bright spots which appear, grow and then disappear in about 20 minutes since I was 18 years old. They happened less during the years and then this happened.
Laser Surgeries:None. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:My right eye vision started pulsing, spots appeared and bright lights and spots appeared. I saw many doctors, opthomologists, retina specialists, neuro opthomologist, and that useless primary care physician. After many tests and shaking of heads they couldn't decide what was happening. I never would have known if I hadn't found this web sight. Thanks. I now am getting a blind spot in the center of vision in my right eye and have another appointment with my retina doctor - I will show him the info I have from this web sight.
Nutritional Supplements:Vitamins. Not a suppliment - but several years on Prempro.
Vision Products Used:No
Additional Comments:My husband blames my hanging a bird feeder in our tree and their droppings, I guess he has to blame something. I can't figure out where I got this, no farms that I have been on. I would love to hear from anybody,
Date: - Wednesday, June 30, 1999 at 11:03:45 (EDT)
Name:Jason Simms. Email: <mwsimms@marshall.edu>
Location:Huntington, West Virginia USA
Date of First Histo Occurence:May 1999
Affected Eyes:Both
Other Stresses at Those Times:None
Laser Surgeries:1. Results:Results were good after the surgery but
got worse after two weeks.
Sub Macular Surgeries:. Results:
Other Medical Treatment:
Nutritional Supplements:
Vision Products Used:
Additional Comments:I went to Johns Hopkins for possible inclusion in the Surgery Trials. Was not included
Date: - Thursday, June 24, 1999 at 15:21:03 (EDT)
Name:Jason Simms. Email: <mwsimms@marshall.edu>
Location:Huntington, West Virginia USA
Date of First Histo Occurence:May 1999
Affected Eyes:Both
Other Stresses at Those Times:None
Laser Surgeries:1. Results:Results were good after the surgery but
got worse after two weeks.
Sub Macular Surgeries:. Results:
Other Medical Treatment:
Nutritional Supplements:
Vision Products Used:
Additional Comments:
Date: - Thursday, June 24, 1999 at 15:19:40 (EDT)
Name:Cris Willemarck. Email: <cwillema@wpsic.com>
Location:Madison, Wisconsin USA
Date of First Histo Occurence:10/84
Affected Eyes:Both
Other Stresses at Those Times:I'm an individual who thrives on stress. This last bout of problems occurred after and during an extreme level of work related stress. No other medical problmes that I can relate to the timing of flareups.
Laser Surgeries:1 left, 0 in right. Results:Surgery Done 10/84. Initially the results were positive. But over the years the scar area has experienced increased blood vessel growth and shifting of location. Net result (after 10 years) was loss of central vision in left eye. Currently at 20/200. Never even tried laser in the right eye.
Sub Macular Surgeries:0 in left, 2 in right. Results:Mixed results. After first surgery 11-16-98, I was at a wonderfull 20/80 after only one week. After four weeks I was back to a perfect 20/20. This was wonderful!! But unfortunatedly short lived, as it only lasted 4 months. The second surgery was done on 5/28/99. One week followup was at 20/180, two week followup is at 20/100. Recovery of vision after 2ns surgery has been much slower than hoped. (I'm not a patient person when it comes to myself.) Next followup is on 6/28/99. Translocation surgery may be an option.
Other Medical Treatment:Have tried the prednisone treatments, got mixed results. Preveiously it was helpful (aside from the side effects). Over the last year, it was not helpful at all and no longer worth the side effects.
Nutritional Supplements:Regular vitamin each day.
Vision Products Used:Magnifying glasses and sitting 6 inches from the computer screen.
Additional Comments:Have given up driving at night and all sport activies. I have found my local library to have a nice selection of books on tapes which has taken the place of old activities.
Date: - Saturday, June 12, 1999 at 16:43:00 (EDT)
Name:Doug Steele. Email: <dsteele@mccormickins.com>
Location:Vincennes, IN USA
Date of First Histo Occurence:5/99
Affected Eyes:Right only, but it is directly in my central vision.
Other Stresses at Those Times:None
Laser Surgeries:. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:My local Optomitrist sent me to a specialist just last week. He has put me on 100 mg. of Predisone (steroid) to be tapered off over next 3 months or so. Evidently, I am in early stages as my sight in right eye corrected is about 20/50. Hoping the steroid will help heal by itself, but not given great odds at this working.
Nutritional Supplements:No
Vision Products Used:Just my regular contacts. However, I am noticing eye strain as the day wears on. I work on the computer quite a bit and it is bothering me some.
Additional Comments:I have been well aware of histo for many years as my family (males only) have a history of getting this. My Father had laser surgery on his right eye back in the late 70's, then had a reacurrence that took his central vision in about 1984. His brother had the same thing about 4 years earlier, also in just the right eye. In addition, since finding out about my histo, I also learned that my Grandfather lost vision in his left eye about 6 years ago (he is nearly 93 now). All three of them grew up in the northern part of Indiana on the farm. I have spent most of my life in the midwest also. I am 41, which is just about the same age my father and his brother were first diagnosed, which I find amazing!!
Date: - Thursday, June 10, 1999 at 18:48:39 (EDT)
Name:Karen Davis. Email: <KarenHS2@aol.com>
Location:Springdale, AR USA
Date of First Histo Occurence:May 1998
Affected Eyes:Left (both have scars)
Other Stresses at Those Times:We had had a stressful year at our church and with my husband looking at new jobs.
Laser Surgeries:none. Results:
Sub Macular Surgeries:none. Results:
Other Medical Treatment:When the blood cleared, I still had my central vision but the vessels were too close to laser. By that time, after doing my own research on the net and
talking to others online with histo, I had decided I didn't want to laser.
My condition has stabilized for the past year.
Nutritional Supplements:My diet consists of primarily raw foods including 20 to 30 ounces of fresh juices (carrot mainly) daily. I take 1 to 2 tablespoons of BarleyGreen. I eat very little animal products. I also try to take flaxseed oil each day. At the time of the flareup I had been attempting to change my diet over to this one and the histo helped give me a good reason.
Vision Products Used:
Additional Comments:I make adjustments such as being careful about lifting heavy objects but I try not to let the histo run my life. Also, I have been through a pregnancy this past year and it doesn't seem to have affected the histo.
Date: - Thursday, June 10, 1999 at 00:16:54 (EDT)
Name:Luanne Gipson. Email: <luanne-gipson@excite.com>
Location:Villa Rica, Georgia USA
Date of First Histo Occurence:November 1998
Affected Eyes:Both eyes, right eye is the one with the active disease at the moment.
Other Stresses at Those Times:Normal work stress, attending classes at the technical school where I work. I have always had headaches but on this particular day it was really bad, and I thought it was just from studying. My right eye started seeing everything blurred and out of shape. I called a specialist that afternoon and his receptionist didn't seem to think it was an emergency. I had to wait for three weeks for my appointment, the doctor sent me straight to a retinal specialist. He performed laser surgery that afternoon. Didn't notice any changes, one week later more leakage, was in the center of my vision. Laser surgery again to try and stop the leakage. In December of 1998, had major surgery done, where they made two incisions and went in and pulled out the blood vessels. All I have left in my right eye is my peripheral vision. In January had another laser surgery, which none have done nothing but cause bigger black spots. On, Friday, May 28, 1999 having more problems, went back the doctor said the scar was spreading out. He will
not try any kinds of treatment, I have done a lot of research on many people with Occular Histoplasmosis,taking different types of steriods. At this point I am willing to try anything, my left eye is beginning to give me problems, I have a lot of scars also in that eye, he told me Friday, that the flashers and floaters I was experiencing were caused by vitreous separations. I am really considering changing doctors. I don't want to loss what sight I have left.
Laser Surgeries:4. Results:Nothing but black spots, The two doctors said, they thought I was a good candidate for laser but they were wrong.
Now the scars are spreading out causing more problems.
Sub Macular Surgeries:1. Results:No change, he wants to just watch my eye for a few months longer. There is nothing else he knows to do.
Other Medical Treatment:None, the doctors will not try any methods that others are trying to help stop in the growing of new blood vessels.
Nutritional Supplements:Vitamins B, C and E.
Vision Products Used:No!
Additional Comments:This eye disease has affected my life so very much, my husband cannot understand how I feel, the lack of medical profession is a constant frustration for me. I feel like I am not doing enough to help my self, I don't know where else to turn. I can't see to drive, and my job is working daily for 10 hours straight on a computer - I am a research assistant. I want to be able to know that I have tried everything to help and keep my sight.
Date: - Friday, June 04, 1999 at 12:07:53 (EDT)
Name:Ann Lynn. Email: <alynn@bellsouth.net>
Location:Louisville, Kentucky USA
Date of First Histo Occurence:April 1999
Affected Eyes:Right so far
Other Stresses at Those Times:Usual work stresses, nothing out of the ordinary
Laser Surgeries:not eligible. Results:
Sub Macular Surgeries:Pending. Results:
Other Medical Treatment:Oral prednisone was started, but at this point cannot be sure if it is working or not. Doctors are currently weening me off prednisone to see if bleeding starts again.
Nutritional Supplements:My mom has me taking a heavy dose of vitamins right now to pump up my immune system because of the steriods. If anyone is interested I'll share her formula and the reasons behind taking what I am taking. I guessed an improved diet, exercise and supplements couldn't hurt.
Vision Products Used:
Additional Comments:I am 28 years old and am interested in talking to anyone willing to listen. There are so many questions that I have since this started and unfortuneatly not a lot of people can answer my questions. This includes the specialists that I have seen. I am currently being treated by a wonderful doctor and the University of Louisville Eye Institute, but I just feel there maybe something else out there for me than surgery. I have only been going through this for about 2 months now, so my vision is not really all that bad yet they have it set at 20/50 in my right eye - that is corrected to that with my normal contact lens prescription. I seem to be stable at that right now, but I am still on the steriods also. So if anyone has anything at all or needs someone to listen to just let me know- And thanks for this site - the support and information has been a help.
Date: - Friday, June 04, 1999 at 09:41:37 (EDT)
Name:Melinda Richards. Email: <jmrmd@eGuide2000.com>
Location:Laguna Niguel, California USA
Date of First Histo Occurence:August 1989
Affected Eyes:Both
Other Stresses at Those Times:My POHS was diagnosed 10 years ago at the age of 33 while I was in the midst of my career as a very busy and successful female OB/GYN physician in Southern California. At the time of diagnosis I was also in the middle of a painful divorce. During the time of my more freguent exaccerbations I also had many additional stresses including the illnesses and deaths of my father, brother and grandmother, leaving a group practice and starting my own business, taking board examinations, coming to terms with my own infertility as a practicing OB/GYN, undergoing workup and treatment, and eventually adopting my wonderful son in an open adoption in which I was not just an adopting parent, but also the birthmother's M.D. Thank God for my wonderful husband of almost 9 years! Add to this just the stress of coming to terms with this illness, leaving my career to become a stay at home mom(which I can honestly say is overall more challenging than my first career!), dealing with the adoption process that dragged on for 18 months(during which time the Baby Jessica story hit the media), adjusting financially, emotionally and mentally to a drastic reduction in income and lifestyle(thank God I had a personal disability policy but it amounted to a small percentage of what I made as an M.D.), my husband loosing his job and starting a new business, and I'm sure the list goes on but that's all I care to remember at present! I stopped working after the 3rd flare up in my "good eye," or as I call it "my spare tire." You can imagine that as a physician I read everything that I could get my hands on, and some literature suggested that long hours, lack of sleep, and high stress could all contribute to more frequent exaccerbations. Not all my doctors bought into that but I sure as heck did and I know that I made the right decision to get out while I still had some vision left. I even had a world renowned retinal specialist out here look me in the eye when my good eye started going bad and say, "If I were you I would be scared #*$!#$&@#less"(if you get my drift). It's been strange being a physician with this affliction cause other M.D.'s don't really know how to deal with me except with pity or with avoidance, since my plight reminds all of them that they are vulnerable to anything as well. Most doctors don't like to think about that. At one point about 8 years ago I took what I call "the national retinal tour," visiting what I considered to be the hot spots in the USA for POHS research. I can tell you hands down that I settled on Dr. Matthew Thomas of St. Louis,MO as the #1 Man! He did submacular surgery on me in Jan. of 1995 with good results---see my comments on the Board. He pioneered this surgery, developed the instruments, teaches it around the world and is the true expert. If any of you are geographically and/or financially able to see him or any of his colleagues in their group, Retinal Consultants, Ltd. at Barnes Hospital in St. Louis by all means go do it. Anyway, I have been home for almost 6 years with my wonderful son Willie and have not have a significant flare in almost 3 years. I thank God for every day that I can see, and I pray and have faith that He will give me the strength and courage to deal with it when I can't.
Laser Surgeries:1. Results:Ablated small juxtafoveal neovascular membrane in left eye with immediate good result. Eventually(about 1 year later) the laser spot expanded(as laser spots are inclined to do, especially those near to your fovea) and my vision decreased to 20/50, then eventually 20/200.
Sub Macular Surgeries:1. Results:I ultimately grew a SFNVM out from my expanding laser scar to the point that I could barely fingercount with that eye. As mentioned above, Dr. Matthew Thomas removed that membrane and restored my vision to at least 20/200---on good days sneaking around that blind spot I can sometimes crank out 20/100 or even 20/50! I know it doesn't sound perfect, but it sure beats fingercounting!
Other Medical Treatment:My good eye is hanging at 20/30, but when I have had a flare I have resorted to intraocular(subconjuctival) steroids(not as bad as it sounds, although before I had it done the first time I had to go in the bathroom and compose myself with meditation so that I wouldn't freak!). I usually take oral prednisone as well in some hefty doses. I start with 80mg. per day for 5
"m, days, then 120mg./day every other day for 10 days, then down it by 20 mg. to 100mgm, etc.---I keep going this way until I reach 20mg., at which point I taper at a much slower rate(1mgm. every few days). I do this because if I go off too quickly I tend to get rebound arthritis in my knees, back and neck, as well as generally feeling like I am going psycho. I even developed fibromyalgia most likely due to steroid induced sleep disturbance, not to mention stress overload. I have been off steroids now for 3 years but will go back on them again if need be. I know that the research is not 100% clear as to whether they truly have a positive effect, but the one time I didn't take them I grew a neovascular membrane resulting in my laser surgery. So that's the deal until I learn more from the medical community. My fibromyalgia is still with me but if I remain active and upbeat it doesn't bother me much. I take Zoloft(an antidepressant) in the AM and a low dose(10mg.) of Elavil at bedtime for good restorative sleep.
Nutritional Supplements:I have taken 1 Ocuvit a day for the last 10 years. I started drinking green tea today after visiting this website!!(Thanks you guys!) I am excited that the new drugs that they have been coming out with for cancer(those drugs that discourage new blood vessel growth and thereby decrease tumor growth) will some day give us Histo sufferers some hope!
Vision Products Used:No.
Additional Comments:I grew up in NJ, went to college in eastern PA, medical school in NJ and moved to Southern California 12 years ago, none of which are hotbeds for Histo. I only visited St. Louis once for 2 days and did not hang out in any chicken coups or dig in the soil. The guys in St. Louis say that eventually our condition will be called Multifocal Choroiditis, with Histo being a definite cause and other agents such as viruses being possible causes of the same pathology as well. I probably can thank some virus for my troubles since I really don't have a history compatible with significant risk of exposure to histoplasmosis(that is, after all, why they call it "presumed"). I think that the Internet is a Godsend and that this group is a much needed mental health site for us all! Thanks for being here!
Date: - Friday, June 04, 1999 at 00:39:56 (EDT)
Name:Bryan. Email: <bryanh37@aol.com>
Location:Sedalia, Mo USA
Date of First Histo Occurence:September98
Affected Eyes:both
Other Stresses at Those Times:Sorry about the first post I sent it before I was through. No other mediacal problems with activity. I did notice however when I exert myself my vision goes away a little. Drink lots of green tea and vision is good. Is not in central vision but over to the left in my left eye. Has caused a little blind spot but it doesn't seem to affect me.
Laser Surgeries:none. Results:
Sub Macular Surgeries:none. Results:
Other Medical Treatment:Drink lots of Green Tea. Hopefully the visudyne drug will help us. Thanks for the board, it helps dramatically. God Bless you all
Nutritional Supplements:Green Tea
Vision Products Used:None
Additional Comments:Green Tea
Date: - Sunday, May 30, 1999 at 19:00:24 (EDT)
Name:Bryan. Email: <bryanh37@aol.com>
Location:Sedalia, Mo USA
Date of First Histo Occurence:September 98
Affected Eyes:
Other Stresses at Those Times:
Laser Surgeries:. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:
Nutritional Supplements:
Vision Products Used:
Additional Comments:
Date: - Saturday, May 29, 1999 at 17:58:54 (EDT)
Name:Tim Llewellyn. Email: <jafo@spimageworks.com>
Location:Los Angeles, CA USA
Date of First Histo Occurence:1989
Affected Eyes:Right
Other Stresses at Those Times:I first noticed it during the summer between my junior/senior year in high
school. I just had the normal stress of a high school student: girls, homework,
college, the rest of my life, etc...
Laser Surgeries:. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:The doctors always seem to put me on a steroid called prednisone.
Nutritional Supplements:My normal vitamins.
Vision Products Used:No.
Additional Comments:
Date: - Tuesday, May 25, 1999 at 15:33:02 (EDT)
Name:JODI WILLIAMS. Email: <msjodi@webtv.net>
Location:collierville, TENNESSEE USA
Date of First Histo Occurence:1954
Affected Eyes:BOTH
Other Stresses at Those Times:AMBLOPIA IN BOTH EYES
Laser Surgeries:. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:NONE
Nutritional Supplements:NO
Vision Products Used:YES
Additional Comments:
Date: - Saturday, May 15, 1999 at 19:35:05 (EDT)
Name:Lisa May. Email: <lsmay60@theramp.net>
Location:Princeton, Illinois USA
Date of First Histo Occurence:June 1986
Affected Eyes:both
Other Stresses at Those Times:My first occurrence was when I was going into my senior year of high school. I was playing softball and began to see double. I had also noticed that straight edges looked bent. Life was good and I didn'thave any unusual stress or medical problems.
Laser Surgeries:1. Results:The results of the laser surgery were excellent. I had a blind spot from the surgery in the upper right area of my vision, which didn't affect me very much. It didn't take long to get used to it. I didn't have any problems until the fall of 1995 (I think). When I noticed a new change in my right eye. Things looked bent in my peripheral vision again. I knew something was wrong immediately. I was sent to a specialist that was supposed to have the capabilities to do same day laser surgery, however, he did not feel that it was necessary and was more concerned with my good eye. He sent me home and told me to come back in three months. I was upset and frustrated because I knew that something was wrong, however I began to doubt myself and didn't get a second opinion for a few weeks. I did finally go to the University of Iowa Hospital and found a wonderful doctor! Unfortunately, by this time the bleeding had spread into the center of my vision and laser surgery couldn't be done. I did receive steroid injections and my vision remained stable for awhile. When my vision slowly started to deteriorate, we opted to try vitreoretinal surgery. What was there to lose?
Sub Macular Surgeries:1. Results:My surgery was not successful, but it was worth the risk in my opinion. My vision was getting worse anyway. I now have 20/200 vision in my right eye. It fluctuates some. I have my peripheral vision, but my center is cloudy and it seems as though I'm looking through a glass of water.
Other Medical Treatment:None
Nutritional Supplements:No
Vision Products Used:No
Additional Comments:I am fortunate that the histo has not really changed my lifestyle. I do notice that my eyes are easily fatigued and seem to be sensitive to fluorescent lights. I'm a teacher and my eyes feel very strange when I walk out of the building at the end of the day. My eye is very sensitive to the light and if I don't wear sunglasses outside, I walk around looking like Popeye! I'm so glad that this site exists! I have already learned so much from all of you! Thanks!
Date: - Friday, May 14, 1999 at 16:59:33 (EDT)
Name:Lisa May. Email: <lsmay60@theramp.net>
Location:Princeton, Illinois USA
Date of First Histo Occurence:June 1986
Affected Eyes:both
Other Stresses at Those Times:My first occurrence was when I was going into my senior year of high school. I was playing softball and began to see double. I had also noticed that straight edges looked bent. Life was good and I didn'thave any unusual stress or medical problems.
Laser Surgeries:1. Results:The results of the laser surgery were excellent. I had a blind spot from the surgery in the upper right area of my vision, which didn't affect me very much. It didn't take long to get used to it. I didn't have any problems until the fall of 1995 (I think). When I noticed a new change in my right eye. Things looked bent in my peripheral vision again. I knew something was wrong immediately. I was sent to a specialist that was supposed to have the capabilities to do same day laser surgery, however, he did not feel that it was necessary and was more concerned with my good eye. He sent me home and told me to come back in three months. I was upset and frustrated because I knew that something was wrong, however I began to doubt myself and didn't get a second opinion for a few weeks. I did finally go to the University of Iowa Hospital and found a wonderful doctor! Unfortunately, by this time the bleeding had spread into the center of my vision and laser surgery couldn't be done. I did receive steroid injections and my vision remained stable for awhile. When my vision slowly started to deteriorate, we opted to try vitreoretinal surgery. What was there to lose?
Sub Macular Surgeries:1. Results:My surgery was not successful, but it was worth the risk in my opinion. My vision was getting worse anyway. I now have 20/200 vision in my right eye. It fluctuates some. I have my peripheral vision, but my center is cloudy and it seems as though I'm looking through a glass of water.
Other Medical Treatment:None
Nutritional Supplements:No
Vision Products Used:No
Additional Comments:I am fortunate that the histo has not really changed my lifestyle. I do notice that my eyes are easily fatigued and seem to be sensitive to fluorescent lights. I'm a teacher and my eyes feel very strange when I walk out of the building at the end of the day. My eye is very sensitive to the light and if I don't wear sunglasses outside, I walk around looking like Popeye! I'm so glad that this site exists! I have already learned so much from all of you! Thanks!
Date: - Friday, May 14, 1999 at 16:56:51 (EDT)
Name:Francine Poirier. Email: <fpoirier@istar.ca>
Location:Toronto, Ontario Canada
Date of First Histo Occurence:About 12 years ago
Affected Eyes:First left, now right
Other Stresses at Those Times:No medical problem (I am quite healthy). The regular stress of a born worrier.
Laser Surgeries:3. Results:Total loss of central vision in the left eye. Small loss of central vision in right eye with a few large blind spots.
Sub Macular Surgeries:0, it was never offered to me. Results:
Other Medical Treatment:Nothing was ever offered to me beside the laser treatment (this includes no drugs of any sorts).
Nutritional Supplements:No.
Vision Products Used:I use a powerful magnifying glass for small writing.
Additional Comments:Reading all the options offered by many doctors, I have to wonder why my doctor (the chief of Ophtalmology at the leading retinal treatment hospital in Ontario)is not better informed. Can anybody recommend some good specialist in Toronto?
Date: - Tuesday, May 11, 1999 at 23:45:52 (EDT)
Name:June Hewett. Email: <JuneH1953@aol.com>
Location:Ft. Worth, TX USA
Date of First Histo Occurence:July, 1984
Affected Eyes:both
Other Stresses at Those Times:No, at the onset. In trying to find any triggers, it seems that illness and menses have more to do with it than stress.
Laser Surgeries:one - at John Hopkins in 1987. Further lose from more leakage and scaring from the laser surgery, with no further treatment.. Results:Lost central vision in left eye.
Sub Macular Surgeries:none. Results:
Other Medical Treatment:I had a wonderful physician in Asheville, NC, an allergist, Don Russell, who researched this disease. Together, (he listened to me intently) we discovered that an anti-inflammatory made a dramatic difference in the progression of my episodes. I took Voltarin for carpal tunnel syndrome. I have taken it now for about 10 years. Also, I have taken Doxycycline, 100 mg twice a day for a year, during which I have had my longest episode-free time. Recently, however, I have experienced a major episode in my right eye. I took Sporanox for a six month round as well as shorter dosages several times. I never received any noticeable benefit from it. I have recently declined (a first for me) a prescription for Sporanox from my retinal specialist because I strongly felt that it was of no use to me (and I would probably take rat poisin if I thought it might help).
Nutritional Supplements:I take multivitamins, extra C, E, and Antioxidants
Vision Products Used:I teach 4th grade and I have to hold my student's papers close and I need bright light.
Additional Comments:I would welcome anyone's experience, any known studies of antibiotics. I may be offbase, but I wonder if antibiotics in combination may be useful. My doctor currently, in Fort Worth, is only willing to prescribe more antibiotics if I can produce some studies. As for stress, I was cautioned to eliminate stress from my life. As a pastor's wife and mother of two small boy's that was impossible. I decided to not go home and wait to go blind. If I wake up and can see, I do whatever I please and can do. That has been more enriching than "eliminating stress". Finally, thanks for the opportunity (my first in 15 years)to communicate with others with this strange disease.
Date: - Friday, May 07, 1999 at 23:13:17 (EDT)
Name:pat smith. Email: <plsdss@hotmail.com>
Location:holly springs, ms USA
Date of First Histo Occurence:1978
Affected Eyes:both
Other Stresses at Those Times:nothing out of the ordinary
Laser Surgeries:. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:prednisone at the beginning for the bleeding - don't know if it helped or not
Nutritional Supplements:antioxidant supplement
Vision Products Used:
Additional Comments:I worry about the likelihood of more flareups. Does anyone know the odds?
Date: - Wednesday, May 05, 1999 at 17:49:53 (EDT)
Name:Wayne Brimhall. Email: <bwayne@mindspring.com>
Location:columbus, ohio USA
Date of First Histo Occurence:between 3-20-94 / 5-4-98
Affected Eyes:both
Other Stresses at Those Times:none
Laser Surgeries:none. Results:none
Sub Macular Surgeries:none yet. Results:none
Other Medical Treatment:none
Nutritional Supplements:
Vision Products Used:
Additional Comments:left eye is the wortse scar in the center of eye
Date: - Wednesday, April 28, 1999 at 17:46:38 (EDT)
Name:Tom W.. Email: <mardiv@msn.com>
Location:Friendswood, Texas USA
Date of First Histo Occurence:Nov. 98
Affected Eyes:both but left is the worse
Other Stresses at Those Times:My company just went thru a Major merger and over 6000 people lost their Jobs this past October (started having the prob. in Nov) In my group all but myself and one other person survived.
Laser Surgeries:one about 4 weeks ago. Results:Surgery was to seal a detachment and fluid build up. Initially had a 50% improvement in the center on my vision. Went from 20/120 to 20/40. Two weeks after the surgery I had another vision loss due to fluid build up but called the Dr. before detachment occurred, he put me on prednisone (60mgs) and after 3 days I have seen major improvement.
Sub Macular Surgeries:none. Results:n/a
Other Medical Treatment:none
Nutritional Supplements:After reading these post I am going to start taking more C,E, green tea and supplemental vitamins, I have been taking Ginsing for a long time. I started the vitamines and Ginsing because my GP informed me that the prednisone has EXTREAMLY elivated my white blood cell count(from a recent physical). Any advise for this???
Vision Products Used:No
Additional Comments:Very interested in the experiences of other concerning the steroid treatment such as side effects.
Date: - Sunday, April 18, 1999 at 14:09:45 (EDT)
Name:Tom W.. Email: <mardiv@msn.com>
Location:Friendswood, Texas USA
Date of First Histo Occurence:Nov. 98
Affected Eyes:both but left is the worse
Other Stresses at Those Times:
Laser Surgeries:. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:
Nutritional Supplements:
Vision Products Used:
Additional Comments:
Date: - Sunday, April 18, 1999 at 13:57:23 (EDT)
Name:Theresa Bailey. Email: <theresa125@aol.com>
Location:Tallahassee, FL USA
Date of First Histo Occurence:1965
Affected Eyes:both
Other Stresses at Those Times:In almost every occurrence stress was a factor. Even my doctor said 10 years ago I should eliminate stress. Every occurrence was in unduly stressful situations.
Laser Surgeries:2. Results:Huge blind spots in the left eye. Last surgery affected the fovea.
The eye with no surgeries, however, has almost as large blind areas due to retinal breaks and vitreous separation.
Sub Macular Surgeries:. Results:
Other Medical Treatment:I am on sporanox for chronic histo in other organs. My retina specialist recommends 1000 E, 1000 C(more for smokers), 60 Zinc. I have also found that a bilberry or eyebright prepartion helps my night vision problems.
Nutritional Supplements:Yes, in addition to the above, I have taken Source of Life multi vitamins for years and believe they are what keeps me alive(my infectious disease doctor does not dispute that). I take coq10, all the above vitamins and milk thistle.
Vision Products Used:Large fonts, magnifying glasses only.
Additional Comments:This disease has affected my life in many more ways than the loss of vision of the last 12 years. The lack of knowledge by the medical profession is a constant source of frustration for me now. After many years of struggling with this disease, I beg all newly affected to gather as much knowledge as they can since I have learned that we are the only ones who can make decisions regarding our health. Most of the medical doctors are themselves poorly educated or informed in the nature of this disease. Trust your doctors, but do not trust blindly, educate yourself and them in the process.
Date: - Sunday, April 18, 1999 at 01:48:40 (EDT)
Name:Mike Harrison. Email: <mrmagoo@op9.com>
Location:Stone Mountain, GA USA
Date of First Histo Occurence:Sunner, '73
Affected Eyes:Both
Other Stresses at Those Times:Nothing beyond normal, daily stress, associated with marriage, child raising, work. Mo medical problems.
Laser Surgeries:2. Results:#1. January, '74, tem "welds" in right eye. Nothing to be done to left as macula covered as well as 60 percent of central vision.
#2. April, '97, two small "welds", again in right eye, to mend bleeders before "the vit" the next day. No futher leaks noted.
Sub Macular Surgeries:one. Results:The surgery was a success, but I still could not, and can't see today. Everything went like clockwork..the surgery, the recovery, the post op followup, until May, when after a visit my eyes never cleared up after the drops wore off. No explanation , nothing further to do. But hope!!!
Other Medical Treatment:Regular follow up visits. Cataract found in right eye during exam for VA calim, too early to treat yet.
Nutritional Supplements:No, but eat a fairly balanced diet. I have to watch my weight, always have, and admittedly, I have been watching it grow around my mid-section for the last year. But, I am exercising some now, so will be back to my "fighting weight" during the summer.
Vision Products Used:Computer with 21" monitor, CCTV with 17" monitor. Don't use zoomtext or other s like it, as I make do with large font. Works most of the time. Also have Mr. Magoo glass's, a pocket mag and a monocular. oh, and I can't forget Bertha my red tipped cane, who goes everywhere with me when I leave the house.
Additional Comments:The 23+ year span between my occurances of histo are extremely rare, or so I've been told. I had rregular checkups yearly during that time, and had seen my opthalmologist in December, prior to my March outbreak two years ago. I have had no further leaks since the vit, but am due to go for a check up shortly. I did have somewhat of a scare last week, though. I started goughing on Saturday, and on Tuesday became extremely short of breath. After several tests, including a lung scan, no cause for the shortness of breath was diagmosed. I had a followup visit Tuesday of this week, and my Dr. is having a blood scan done for histo, to see if any activity noted. I also, today, had a complete PFT, pulmonary function test. And, according to the tech who administered the test, I "aced" it. So, we wait for the blood test to come back.
Date: - Friday, April 09, 1999 at 01:07:30 (EDT)
Name:Mary Ann Rapp. Email: <mar94@gwu.edu>
Location:Alexandria, VA USA
Date of First Histo Occurence:June 1996
Affected Eyes:Both
Other Stresses at Those Times:Under tremendous emotional stress due to school and work. Had back surgery previous summer for herniated disk. Major weight gain before and after surgeries. Sudden onset of miagraines at time of first occurence.
Laser Surgeries:1. Results:This was to seal up leaking about 2 weeks post sub-macular surgery. No problems associated with this since.
Sub Macular Surgeries:2 - First was July 96 in right eye - second was 10/96 in right eye - the growth grew back same location. Results:Eyesight worsened. At time of onset,vision went from 20/20 to 20/400 - spots were dead center. Improved to 20/70 two months after surgery. Four months after first surgery, eyesight was 20/200 - after second vitrectomy eyesight is at 20/1,000.
Other Medical Treatment:Not histo related but been on lots of medications for gastro-esophageal reflux, depression, etc.
Nutritional Supplements:No, but was advised by surgeon before and after surgery to take combo of Vitamin E and C.
Vision Products Used:No.
Additional Comments:I think stress was the predetermining factor in activating my scars. I'm working hard to eliminate all sources of stress and to learn better adaptive ways of dealing with stress.
Date: - Monday, April 05, 1999 at 19:35:24 (EDT)
Name:Steve Clark. Email: <clark_steve@hotmail.com >
Location:Bristol, Tennessee USA
Date of First Histo Occurence: Dec 20 1998
Affected Eyes:
right only
Other Stresses at Those Times: Supervisor of installlation of commerical refrigeration and kitchen equipment in two different max sec. prisons.
Laser Surgeries:1 on 12 -21-98. Results: not good vision went from 20/40 to 20/200 with blind spot in center of vision
Sub Macular Surgeries: 1 on 1-12-99. Results:vision back to 20/60 with blind spot in center vision some side vision looks like looking through wax paper still some blood but leaving doctor is real happy
Other Medical Treatment:none
Nutritional Supplements: none
Vision Products Used: was told ther were none. not using any.
Additional Comments:Still not happy had hopes for better vision.
Date: - Monday, March 29, 1999 at 20:01:24 (EST)
Name:Martha Emmons. Email: <emarty_@hotmail.com >
Location:Archbold, OH, USA
Date of First Histo Occurence: 3/97
Affected Eyes:Both
Other Stresses at Those Times:In October1998, my daughter was diagnosed with Hodgkin's disease. Recurrance in right eye shortly after.
Laser Surgeries: . Results:
Sub Macular Surgeries:4. Results:The surgery worked for awhile but returned 9 months after the first surgery.
Other Medical Treatment:When I was first diagnosed, they put me on Prednisone. However, it had no effect.
Nutritional Supplements: No
Vision Products Used: I have a magnification program on my computer that is very helpful. Also, I use a Dazor lamp that helps me when working on my checkbook and bills.
Additional Comments:
Date: - Monday, March 29, 1999 at 18:42:20 (EST)
Name:Lyndsay Topham. Email: <marty@bctree.com >
Location:Kelowna, British Columbia, Canada
Date of First Histo Occurence: Fall, 1974
Affected Eyes: Both
Other Stresses at Those Times:1970 High pressure job for first 2 occurences 1974,76; Normal 1979, but about time my son was concieved; had just moved 1981; last year of BFA studies 1997. It seemed to pick alternate eyes, r,l,r,etc. At present my left has no central vision and just picks up colours periphally. My right has regained sight since the 1st occurance, but again no cv. Yet I find that together l & r give me a better picture than just using he right.
Laser Surgeries: No, but had 2 Dr.s fighting whether it should bee done.. Results:
Sub Macular Surgeries:Nil. Results:
Other Medical Treatment:On Prozac at present time, but have no energy. But my husband had promised if I should ever get my drivers license back, he will buy me my own Rolls Royce. He's fairly confident he won't hace to. Also, I am from New Zealand originally which doesn't have Histo, and the Dr's all ask when was I visting Niagara Falls, - one day only in early 1968.
Nutritional Supplements: General multi-vitamins, Essential Fatty acids, Vit E, Vit C
Vision Products Used:No aids - I find most cause motion sickness. I wear progressive lens glasses for distance vision, especially after last occurnce. I found after 5 prescriptions that my vision differs from morning to night, depending on the stress level, and if I stop my physiotherapy. This is reading magazines (no glasses on) for close up, computer games (solitaire etc) for middle, and TV for fas distance. If I don't do 2-3 hours per day of these my vision is very low in all areas. I want to be as normal as possible, so I work hard at it.
Additional Comments:My son was conceived just as I had an occurance in 1979. I was on Prednisone and Clindamyacin at the time. It has been a very difficult time for us all, he was diagnosed with epilepsy at 11 mths, learning disabled at 4yrs, ADHD at 7yrs and Aspergers Syndrome (Autism spectrum) at 15 yrs. We have no idea if all this is related, does anyone else have children with medical problems. At the time of pregnancy, we asked all the specialists we could about problems and got the answer, they had never heard of a pregnant woman with histo. Most had never heard of it anyhow in the eyes, usually in the lungs.
Date: - Sunday, March 28, 1999 at 18:14:02 (EST)
Name:Jane McKeigue. Email: <jane_mckeigue@jdedwards.com>
Location:Monument, Colorado USA
Date of First Histo Occurence:Fall 1970
Affected Eyes: left/minor in right
Other Stresses at Those Times:1970 I don't remember. In 1996 major work related stress. Flare up ended without treatment -- other than being examined. Made dramatic changes in lifestyle to reduce stress.
Laser Surgeries:0. Results:
Sub Macular Surgeries:0. Results:
Other Medical Treatment:Frankly, I don't remember what they gave me in 1970, but in 1996 the flare up settled down with no meds.
Nutritional Supplements: I follow Jean Carper's regimine (Stop Aging Now. I take an aggressive amount of supplements. REcently, my doctor recommended immune boosting vitamins to reduce the chance of a flare up. Minimally this would be a good multiple and antioxidants.
Vision Products Used:
Additional Comments:
Date: - Thursday, March 25, 1999 at 15:45:28 (EST)
Name:Becky. Email: <jblount@datastar.net>
Location:Carriere, MS%/92 USA
Date of First Histo Occurence:5/92
Affected Eyes:both
Other Stresses at Those Times:None.
Laser Surgeries:2. Results:1992 left eye Good results. Corrected vision is 20/70. 1994 poor, right eye, corrected vision 20/200
Sub Macular Surgeries:. Results:My doctor said I was not a good canidate for submaculr surgeries. Because my spots are in the center of the macula region
Other Medical Treatment:I took Decadron for about 2 years for my right eye. But, in summer of 94, I had that spot lasored because of leaking and growing larger. I wish it would have been lasored to start out with. My right eye started gibing me trouble about8 months after I lost my left eye.
Nutritional Supplements:No. I work out in a gym 3 times a week. I still can't manage to get this last 10 pounds of STEROID weight off.
Vision Products Used:I use magnification. That's all that really helps.
Additional Comments:I take Prozac for depression. I've been on some type of anti-depression med since 1993. Come this May 8th, I will have suffered from histo for 7 years. I'm thankfuf it wasn't any worse, but it's like waiting for a bomb to go off!!
Date: - Thursday, March 18, 1999 at 09:41:09 (EST)
Name:Tim Martin. Email: <tmartin@imacs.com>
Location:Dallas, TX USA
Date of First Histo Occurence:3/98
Affected Eyes:Both
Other Stresses at Those Times:Plenty of stress related to my job as director of software development for a mdeical software firm in Dallas. Also, plenty of stress trying to finish work on my first music CD for Higher Octave records.
Laser Surgeries:None. Results:The spot in my right eye that has developed a CVN is too close to the center to laser. The histo spots in my left eye are not near the macula and are not active at this time
Sub Macular Surgeries:None. Results:My FA is currently being reviewed by Dr. Matthew Thomas at Barnes in St. Louis for submac surgery followed by macular relocation surgery. The relocation surgery is not a given...it is based on the damage done to the foveal epithelial pigment layer during the normal submac surgery.
Other Medical Treatment:I was on prednisone for about 3 months from 4/98 to 6/98...buit Dr. Thomas stopped that the first time he saw me. There seems to be evidence that in the long term, steroids actually exacerbate the problem...even though they may mitigate it somewhat in the near term. Currently taking 400mg Sporanox and will do so for the next 3 to nine months.
Nutritional Supplements:Bilberry 20mg, Ocuvite 200mg, Omega-3 fatty acids 500mg, Echinacea-Goldenseal 500mg, and St. Johns Wort 500mg
Vision Products Used:None
Additional Comments:This survey is really great! You might add OD/OS readings...for instance my readings are OS (left): 20/20 - 3, OD (right): 20/200. Also, if you have nothing better to do, a followup form might be useful to allow us to track each other's progress. But what you've already done is outstanding!
Date: - Wednesday, March 17, 1999 at 17:27:59 (EST)
Name:Shannon Shuck. Email: <jorshuck@aol.com>
Location:killeen, texas USA
Date of First Histo Occurence:3-31-95
Affected Eyes:left
Other Stresses at Those Times:When first diagnosed I was planning my wedding and the second time I was pregnant with my first daughter.
Laser Surgeries:1. Results:Lost vision very closr to my macula, I feel that a very large area was lost in the treatment but, still had center vision.
Sub Macular Surgeries:1. Results:With the sub-macular surgery I lost more vision, but I have good periphal vision but, no center vision except for a small spot that is my macular vision.
Other Medical Treatment:none
Nutritional Supplements:no
Vision Products Used:no
Additional Comments:
Date: - Tuesday, March 09, 1999 at 11:24:54 (EST)
Name:Bill Pickett. Email: <sgmpickett@aol.com>
Location:Fort Sam Houston, Texas USA
Date of First Histo Occurence:July 1986
Affected Eyes:Both (legally blind)
Other Stresses at Those Times:Every occurrence/recurrence has been stress-related. Most occurred during times when I was being transferrewd from one place to another (I'm in the Army).A couple have occurred during other illnesses (pneumonia). I am also an easy infector--cuts and bites lead to infections and celluolitis. Other than that I'm a really happy camper.
Laser Surgeries:Left-6 Right-3. Results:Lasers on peripheral scars were uneventful. Lasers in left eye macula were doomed from the start. Directly abutted fovea and iniital treatment resulted in further leakage and finally obliteration of foveal vision. Right eye central laser performed in Korea at Seoul University Hospital. Leakage also occurred directly above fovea. Docs there said no more and shipped me back to the states for sub-mac. To date results have left me with 20-800+ in left eye, 20/250 in right
Sub Macular Surgeries:Right-1. Results:Removal of neovascular membrane also latched onto previous laser scars and pulled them out along with some healthy stuff. Pre-surgery 20/100; post-surgery 20/250. Vision would have dterirorated tot hat point in weeks so it was worth the try.
Other Medical Treatment:Steroids-no effect.
Nutritional Supplements:
Vision Products Used:CCTV with 19-0inch screen. I see white on black better tahn black on white. I have a 2.8X and 4X telemicroscope mounted on eyeglass frames I use for reading and watching TV. (Two separate pair both scopes for my right eye, the left lens is taped over), I'm recieivng a computer with ZoomText and 19-inch monitor from the VA. I also have found that UV filter glasses increase sharpness inside and outsideand am awaiting delivery on those. Can't remeber the color numbers but they're very similar to those yellowish hunting glasses you can get on the open market. I also have a pair of Beecher binocolar scopes mounted on eyeglass-type frames that allow me to watch sports events from the sidelines and bleachers. Beliebve it or not I can even pick up more peripoheral action in my bad eye. I have a portable 4X segment reader (lighted) that allows me to read outside or in places I can't take my CCTV and a line segment reader (3X) for the same thing (non-portable). And lots of lights, the brighter the better. For those with a VA connection, the VA will give you a $3000 or $4000 grant to upgrade the lights in your place if you qualify. Oh yeah, I also got a red-tipped cane for those tight spots. I also have a tape player for "reading" books for the visually impaired (on tape)./
Additional Comments:Those of us who are legally blind and have a service connection need to take advantage of the VA's blind rehad program. All of the low-vision devices I have were given to me through this prtogram. In addition to evaluating your needs and and taking care of those needs (visual aids), they provide counseling, fellowship with fellow vets in skimilar straits, and a time to get your head together. It was a real blessing for me and my family. Five weeks of inpatient time, but well worth the ticket. Amd don't forget to file for Social Security. Every little bit helps.
Date: - Monday, March 08, 1999 at 09:17:45 (EST)
Name:Julia Klyn. Email: <klynja@mailexcite.com>
Location:Ottumwa, Iowa USA
Date of First Histo Occurence:September, 1992
Affected Eyes:Both
Other Stresses at Those Times:At the time of my initial onset, I had an alergic reaction to medication. Normal stresses at the time...i.e., mother of two, full-time job, etc.
Laser Surgeries:Three. Results:Initial onset was in right eye (I was 31 at the time), adjacent to center vision. Laser was performed immediately, leaving a small blind spot. Three years later, that spot began to leak fluid. Because it was in my center vision and I still had full vision in my left eye, it was decided not to perform laser again. In a matter of months, it spread and took the center vision in my right eye. Three years later, a spot in my left eye, again bordering on the center vision, became active. Laser surgery was immediately performed, however, three weeks later I was back in front of the laser sealing up the edge of the spot that had leaked through the laser line. That was Sept. of 1998. Have had no further problems with the histo spot in my left eye.
Sub Macular Surgeries:None. Results:n/a
Other Medical Treatment:None
Nutritional Supplements:No
Vision Products Used:None
Additional Comments:All of my major flare-ups have occurred in September, prime allergy season in this region. Before my initial flare-up, I had experienced no allergy problems.I think this survey is a great idea.
Date: - Sunday, March 07, 1999 at 22:23:36 (EST)
Name:Gayle Hawkins. Email: <ghawkins@island.net>
Location:Bamfield, British Columbia Canada
Date of First Histo Occurence:October 1979
Affected Eyes:initially right, now both
Other Stresses at Those Times:I was 18 when my first retinal hemorage occured and I was diagnosed with Histo. Virtually no stress happening at that time and no out of the ordinary stress at the time of any other activity
Laser Surgeries:One. Results:In early 1980 the one spot in my right eye was lasered leaving me with a small blind spot just left of my center of vision. the spots in my left eye are numerous, very small and too close to my center of vision to laser. I haven't had an active histo spot in over ten years yet in the past five years my vision continues to decrease. I've been told in the past couple of years my retinal scarring hasn't changed yet I know my blind spots are growing and now over lap so that I have blind spots when I have both eyes open. It has been suggested to me by my retina specialist that this could be from the laser surgery. It is now believed that this surgery causes a ripple effect of damage out from the area that is cauterized. I am assumming that as I age this area is slowly shutting down and I'm losing more vision though my scar area remains the same.
Sub Macular Surgeries:none. Results:
Other Medical Treatment:Large doses of Prednisone when first diagnosed to stop the bleeding. Similar doses when activity in left eye has been diagnosed but I don't bother anymore I haven't found that my vision recovers any quicker when taking the steroids.
Nutritional Supplements:I try to remember to take an vitamins C, E, B complex and beta carotene.
Vision Products Used:No
Additional Comments:I'm amazed at the info out there on the web now. A couple of years ago I couldn't really find anything and haven't bothered to look again until today. Yours is the first site I looked at. I haven't heard anything about sub macular surgery. What is it and how can it help? If anyone wants to contact me for info that I may have please do so.
Date: - Saturday, March 06, 1999 at 16:49:15 (EST)
Name:Pat Calchera. Email: <richard@may-uky.campuscwix>
Location:Maysville, KY USA
Date of First Histo Occurence:March 1998
Affected Eyes:Both
Other Stresses at Those Times:I work with behavior disorders in our special education department in an elementary school. Also, during my first active episode, I was experiencing a lot of allergies (I have asthma which is allergy related in my case) and was coughing a lot at the time.
Laser Surgeries:1. Results:Permanent blind spot, but it did stop the bleeding in that area. It is really close to the center of vision and therefore, there is a small distortion slightly above my center of vision.
Sub Macular Surgeries:. Results:
Other Medical Treatment:Had several (3) times of being told "Let's see if this can heal itself without treatment." I think mainly to keep from harming my 20/20 vision I have in the lasered eye.
Nutritional Supplements:I take lutein and bilberry supplements.
Vision Products Used:
Additional Comments:
Date: - Thursday, March 04, 1999 at 23:05:15 (EST)
Name:KATHY. Email: <KTeadid@aol.com>
Location:Winston salem, NC USA
Date of First Histo Occurence:Sept. 1989
Affected Eyes:both (left first)
Other Stresses at Those Times:nothing adnormal, reg stress of life
Laser Surgeries:none. Results:
Sub Macular Surgeries:none. Results:Only a possible canidate once
Other Medical Treatment:Watch and wait, I hade a major leakage in 1994, that cleared and returned to normal vision on it;s own, within 2 months time
Nutritional Supplements:when I remember
Vision Products Used:magnifying glass, mostly sitting a few inches from screen on cumputer
Additional Comments:Left eye has improved majorly since right central vision has deteriorated. No central in left for ten years, now a very small area is seeing, correctable to 20/40, this is amazing to me.
Date: - Thursday, March 04, 1999 at 12:13:00 (EST)
Name:Amanda Gerald. Email: <ahowellg@aol.com>
Location:Fayetteville, GA USA
Date of First Histo Occurence:initial 3/93.vision not affected til 11/98
Affected Eyes:left only
Other Stresses at Those Times:transfer at company to highly stressful job 5/98
Laser Surgeries:1. Results:see submac below.
Sub Macular Surgeries:2. Results:1st submac 12/15/98-within 2 weeks another spot developed right next to original. 2nd submac performed 1/12/99 (4 weeks to the day). Within 1 week another spot in same general area. Dr. decided this one was option for laser which was done on 1/15/99. 4th spot showed up within 2 weeks but decision was to "wait and see". Can now thankfully say that dr. feels it is drying up on it's own. All areas have been on edge of macula that has somewhat affected my central vision.
Other Medical Treatment:was offered steroid treatment but declined.
Nutritional Supplements:multi vitamin, vitamin A and vitamin E
Vision Products Used:no.
Additional Comments:have small blind spot over central vision area in left eye. my right eye is still at 20/20 with no occurences.this survery is a great idea!
Date: - Thursday, March 04, 1999 at 09:01:36 (EST)
Name:Anita Jensen. Email: <maggymay@gateway.net>
Location:Seattle, WA USA
Date of First Histo Occurence:1979
Affected Eyes:both
Other Stresses at Those Times:Always under high stress except this last occurrence, which seems to be a leaking laser spot.
Laser Surgeries:4 but only 2 spots. Results:1 laser spot has gone 8 years with no problems and is quite small. the other went 6 years and now is leaking and won't stop! (has been since relasered 2 times and still leaking so I think it may end up being lasered again. This spot is obviously getting bigger and bigger from all this and has very little room to grow on the fovea side of the scar).
Sub Macular Surgeries:none but could be next step if this doesn't stop.. Results:
Other Medical Treatment:Would do anything for PDT about now (I understand that it could maybe find the source of my leaks which very well might be coming from veins growing INSIDE the old laser scar).
Nutritional Supplements:Bilberry, Lutein (20mg), antioxidants, high potency general vitamins. Eating lots of spinnach!
Vision Products Used:don't need them as I can still read
Additional Comments:My general health is good. I haven't had even a cold for several years.
Date: - Thursday, March 04, 1999 at 00:04:56 (EST)
Name:Mark Reoch. Email: <lhg@silicon-north.com>
Location:Ottawa, Ontario Canada
Date of First Histo Occurence:January 1998
Affected Eyes:Both
Other Stresses at Those Times:BOTH OCCURANCES HAVE COME FALLOWING PERIODS OF HIGH STRESS AND DURING THE WINTER MONTHS ?
Laser Surgeries:Two. Results:I have a fair sized blind spot in my right eye. Fallowing the first occurance I had a small blind spot in my left eye .
Sub Macular Surgeries:Next Step. Results:None Yet
Other Medical Treatment:no
Nutritional Supplements:I'm planning on starting soon !
Vision Products Used:No
Additional Comments:This survey is a great idea !
Date: - Wednesday, March 03, 1999 at 20:41:08 (EST)
Date of First Histo Occurence:Somethime in 1988
Affected Eyes:both
Other Stresses at Those Times:
Laser Surgeries:26. Results:prolonged sight in left eye from 88 to 90. prolonged sight in right eye from 90 to 91. Legal Blindness in 91. Lost central vision in both eyes 91.
Sub Macular Surgeries: Results:
Other Medical Treatment:none
Nutritional Supplements:none
Vision Products Used:Zoomtext computer screen magnification software with 21" monitor. Optelec 20/20 CCTV, Creative Lavs Text to Speech. "An Open Book" scanning audio software. Various hand held magnifiers and lighting devices.
Additional Comments:
Date: - Monday, February 22, 1999 at 13:12:45 (EST)
Name: Meryl Smith Email: <merylsmith@att.com>
Location:Lincroft, NJ USA
Date of First Histo Occurence:2/97
Affected Eyes:right,
Other Stresses at Those Times: Both times, extremely busy with heavy responsibilities.
Laser Surgeries: 1 Results:Excellent results - small blind spot. Nothing for 2 years
Sub Macular Surgeries:noneResults:n/a
Other Medical Treatment: None
Nutritional Supplements: Lutein 6mg, Eyebright 25 mg, Bilberry 20 mg since 2/99.
Vision Products Used: Currently trying ZoomText. Looking for good book magnifier for reading.
Additional Comments:
Date: - Thursday, February 18, 1999 at 17:51:06 (EST)