Keratoconus?! in my mind I still had that 20/20 vision I always felt proud of.


I am currently 29 years old. As a child I would be pretty healthy, I always felt proud because in a health exam I was told I had a 20/20 vision. To me everything would seem normal and I didn't know that by age 23 my vision would start to degrade. It was during a regular check up that I was asked if I had never used glasses. I couldn't understand that question, in my mind I still had that 20/20 vision I always felt proud of. I was convinced into seeing a specialist who would later mention to me for the first time the word keratoconus.

By then I was about to move to Turkey so a deep diagnosis was not done. Once in Turkey I was told by a new doctor that our best course was to examine the development of this condition every six months.

By then I had a small idea of what keratoconus was, my vision had not deteriorated so much so I decided to wait. I could still see a little bit with lots of effort. Unfortunately I was never told not to rub my eyes and I noticed that if I pressed my eye in certain areas the image would be clearer. So for six months unknowingly I helped to worsen my condition.

By the time my checkup came, I could notice much more blurriness and the doctor at the time suggested to get rings done. However it was not something of his expertise so he suggested me to go to another private hospital where I could get something different done. Thus time, the new doctor suggested doing crosslinking in both eyes. Sadly, such surgery was not covered by my insurance and it would take me so many years to pay.

Not knowing what to do I opted for a second opinion from a professor who works in a state hospital. She told me that private hospitals tend to manipulate patients in to surgeries because of the monetary side. Such hospitals tend to suggest surgeries even though they are not completely necessary.

This new doctor told me that it would be worth waiting to see new developments in my condition. That keratoconus would stop by the age of 30 and since I was 27 at the time I thought it would be a good idea to wait. In the meanwhile I was given glasses that would slightly improve my vision enough to continue working.

Two years after no significant developments I moved back from Turkey and I was forced to find a new doctor. Again I was suggested to get cross linking and corneal rings done in order to regain a bit of sight according to the new doctor. They also suggested using a special contact lens, though I was not convinced.

I am still waiting for proof that surgery is a must.

Carlos García

10 comments:

  1. Cross-linking has stopped my progression of the disease. Granted I have to wear scleral lenses, but that brings me the closest I've been to 20/20 since diagnosis 4 years ago.

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  2. Please dont wait. My eyes were stable until 43! I was never told about developing hydrops. Went blind in right eye at 43 and then left at 46. My hydrops has not cleared on its own so had to have cornea graft and then developed tramatic glucoma resulting in a shunt being put in the left eye. Sight is about 50%. Currently waiting on decision on whether i cam haave graft n right eye. If i had been offered cross linking i would have jumped at the chance and never gone blind

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  3. Cross linking is the way to go. Now it is approved by the FDA. For more than 20 years I was not able to correct my vision more than 20/60 and could not drive at night. When I have it done in 2011, it was still experimental, but saved me from a cornea transplant. The deterioration stop completely and now with the help of scleral lenses my vision is 20/30. Although I prefer not to drive at night, a month ago, I had to do it and was able to see clearly without problems.

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    1. I believe that "some" cross – linking has been approved. There is "Epi on" and Epi off" we just did off with our 17-year-old son because it is FDA approved. Epi "on" is not. Expensive… Our insurance did not cover it – and we did not want to wait so our son could have full advantage of being young and having this done. Doing the second Eye in April.

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    2. If you don't mind, what was the actual cost?

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  4. Definitely get the Cross Linking done!!! If I hadn't of had both my eyes done a few years ago I would definitely be blind by now. The longer you wait, the worse the condition gets and you can't turn back from that. From someone who has had both eyes please consider it seriously.

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  5. Please go ahead with c3R, it is worthful to have it. It will stop further deterioration of your eyes. Highly suggested to go ahead !

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