Glaucoma misdiagnosed after 17 years of Latanoprost treatment!

I was diagnosed with glaucoma over 30 years ago. I'm now 79. They had trouble keeping my pressure within range 12-15. I'm now on 3 eye drops: Pilocarpine, Dorzolimide, and Rocklatan which works to keep pressure in range. I have field test at least once a year. I've now lost all central vision in left eye and I only have about 50% of field left in right eye. So I have low vision with lots of glare problems. I see an optimologist who trained at Bascom Palmer Eye Institute in Miami, and I go there every 5 years to see if anything new is recommended. I highly recommend you go to one of the top eye research centers for a second opinion if you have any questions.

In 2008 an optomitrist sent me to a glaucoma specialist. I did not see the referral and was not sure why it was felt I might have glaucoma. I had been seeing an opthalmologist for years, with no mention of glaucoma, but after moving went to a local office for a vision check. The glaucoma specialist knew that I had concerns due to the fact that my great grandmother went blind following a severe headache.....presumably acute angle glaucoma. The specialist did testing and told me I needed to begin using nightly eye drops, Lantanaprost. I did not question the specialist and just followed instructions. After years of what seemed like constant appointments with repeated tests I decided to switch to the opthalmologist my husband had seen for years. He indicated that my glaucoma was very mild and had me continue the drops, but reduced the number of tests he required compared to the glacoma specialist.

After a few years he told me that I have Fuchs' Dystrophy and I might need cornea surgery in the future, but nothing was needed at the time and I should have cataract surgery. I didn't think my vision was that bad and told him I wanted to put off cataract surgery. He had done cataract surgery on my husband who got multi-focus lenses and had great vision just a day after the procedure. I finally told the doctor it would be OK to have the cataract surgery and he told me I could only have single focus lenses due to my Fuchs'. I told him that, due to that limitation, I did not want to do the surgery. A year later he again told me I should have cataract surgery and that there was a new multi-focus lens he could insert. He told me "recovery might take longer" but he had many Fuchs' patients with successful results. I read about Fuchs', but basically trusted him and his advice. He did the surgery and I later found out he did not use the type of solution or the method of surgery recommended for Fuchs' patients. The morning after surgery my eye was very painful and I could read only the big E and one line on the eye chart. He told me my vision would be much better in two days, but I was still in pain and my vision was not improved. I now realize my cornea was greatly swollen, which was causing the pain. He seemed annoyed that I wasn't thrlled with my vision. Over weeks my vision did improve somewhat, but it was no better than before he put in the $3,600 lens. I could see the color white more clearly but that was the only improvement. I found an online forum about cornea dystrophies and learned that the treatment I had been given was definitely not appropriate. I then was lucky enough to find an exceptional eye surgeon in Florida and flew there from Texas for treatment on my other eye. A DSO (Desemet stripping only) was done along with cataract surgery and I had great results.

Then, back home I went to a cornea specialist for follow up checks, but she would not treat my glaucoma. She gave me a list of glaucoma doctors and I picked a name and made an appointment. To my disgust, the doctor turned out to be part of the practice I had left a few years earlier. Immediately I was put on the same continual testing routine. I was not happy with all the repeated glaucoma tests and I questioned the doctor about why so many more tests than the opthalomoligist had required. The doctor was not happy with my questions. At one appointment I told them I did not want to do the field test and asked if it could be done at my next appointment. The doctor told me I had to do the test right then because my insurance would not pay for it if they postponed it to the next visit when more tests would be done. Obviously, all the tests were meant to add to the financial bottom line more than being what was really required. Since my eye pressure had NEVER been elevated, I began to doubt if I even HAVE glaucoma. An assistant had called me when I asked someone to tell me the results of the tests I had recently done. She could not explain why I would have been referred in the first place and said she would have the doctor contact me. The doctor called me and stressed that because of all my questions she had spent hours of her weekiend reviewing my records and the phone call was taking up her lunch break. She told me that when I first was referred to their practice if ten doctors had seen my testing, five of them might have said I have glaucoma and fivc could have said there was no problem.................She said the doctor who initially told me I had to be treated for glaucoma is no longer with the practice. She told me I had been "aggressive" with my questions and when I had balked at the test had told me about the insurance situation. She said that I have normal pressure glaucoma. I asked if I have any loss of peripheral vision and she said no. I asked if my optic nerves were damaged and she said no, but they were a bit larger than expected....She told me that at my next appointment they will do some newer test that could give information about normal pressure glaucoma. I will go to that appointment but will then try to find an opthalomogist for my regular check ups. I feel like I have been used, treated inappropriately and taken advantage of so doctors could get more money. I had never been told that I have "normal pressure" glaucoma until I started questioning what was going on; I am now trying to find information about normal pressure glaucoma.......

In 2008 an optomitrist sent me to a glaucoma specialist. I did not see the referral and was not sure why it was felt I might have glaucoma. I had been seeing an opthalmologist for years, with no mention of glaucoma, but after moving went to a local office for a vision check. The glaucoma specialist knew that I had concerns due to the fact that my great grandmother went blind following a severe headache.....presumably acute angle glaucoma. The specialist did testing and told me I needed to begin using nightly eye drops, Lantanaprost. I did not question the specialist and just followed instructions. After years of what seemed like constant appointments with repeated tests I decided to switch to the opthalmologist my husband had seen for years. He indicated that my glaucoma was very mild and had me continue the drops, but reduced the number of tests he required compared to the glacoma specialist.

After a few years he told me that I have Fuchs' Dystrophy and I might need cornea surgery in the future, but nothing was needed at the time and I should have cataract surgery. I didn't think my vision was that bad and told him I wanted to put off cataract surgery. He had done cataract surgery on my husband who got multi-focus lenses and had great vision just a day after the procedure. I finally told the doctor it would be OK to have the cataract surgery and he told me I could only have single focus lenses due to my Fuchs'. I told him that, due to that limitation, I did not want to do the surgery. A year later he again told me I should have cataract surgery and that there was a new multi-focus lens he could insert. He told me "recovery might take longer" but he had many Fuchs' patients with successful results. I read about Fuchs', but basically trusted him and his advice. He did the surgery and I later found out he did not use the type of solution or the method of surgery recommended for Fuchs' patients. The morning after surgery my eye was very painful and I could read only the big E and one line on the eye chart. He told me my vision would be much better in two days, but I was still in pain and my vision was not improved. I now realize my cornea was greatly swollen, which was causing the pain. He seemed annoyed that I wasn't thrlled with my vision. Over weeks my vision did improve somewhat, but it was no better than before he put in the $3,600 lens. I could see the color white more clearly but that was the only improvement. I found an online forum about cornea dystrophies and learned that the treatment I had been given was definitely not appropriate. I then was lucky enough to find an exceptional eye surgeon in Florida and flew there from Texas for treatment on my other eye. A DSO (Desemet stripping only) was done along with cataract surgery and I had great results.

Then, back home I went to a cornea specialist for follow up checks, but she would not treat my glaucoma. She gave me a list of glaucoma doctors and I picked a name and made an appointment. To my disgust, the doctor turned out to be part of the practice I had left a few years earlier. Immediately I was put on the same continual testing routine. I was not happy with all the repeated glaucoma tests and I questioned the doctor about why so many more tests than the opthalomoligist had required. The doctor was not happy with my questions. At one appointment I told them I did not want to do the field test and asked if it could be done at my next appointment. The doctor told me I had to do the test right then because my insurance would not pay for it if they postponed it to the next visit when more tests would be done. Obviously, all the tests were meant to add to the financial bottom line more than being what was really required. Since my eye pressure had NEVER been elevated, I began to doubt if I even HAVE glaucoma. An assistant had called me when I asked someone to tell me the results of the tests I had recently done. She could not explain why I would have been referred in the first place and said she would have the doctor contact me. The doctor called me and stressed that because of all my questions she had spent hours of her weekiend reviewing my records and the phone call was taking up her lunch break. She told me that when I first was referred to their practice if ten doctors had seen my testing, five of them might have said I have glaucoma and fivc could have said there was no problem.................She said the doctor who initially told me I had to be treated for glaucoma is no longer with the practice. She told me I had been "aggressive" with my questions and when I had balked at the test had told me about the insurance situation. She said that I have normal pressure glaucoma. I asked if I have any loss of peripheral vision and she said no. I asked if my optic nerves were damaged and she said no, but they were a bit larger than expected....She told me that at my next appointment they will do some newer test that could give information about normal pressure glaucoma. I will go to that appointment but will then try to find an opthalomogist for my regular check ups. I feel like I have been used, treated inappropriately and taken advantage of so doctors could get more money. I had never been told that I have "normal pressure" glaucoma until I started questioning what was going on; I am now trying to find information about normal pressure glaucoma.......