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I saw my former ophthalmologist today for a corneal topography, which is the gold standard in diagnosing keratoconus (KC).  My optometrist had diagnosed me with the disease on July 13, 2012, roughly 9 months after my vision started to fail.  That was a Friday, so I suggest not going to a doctor on Friday the 13th.

General information on keratoconus can be found here.

My ophthalmologist is a corneal specialist and I feel comfortable putting my eyes in his hands, so to speak.  I only wish I had not been shifted around in his practice, as I feel I would have gotten a diagnosis earlier and before my vision progressed to its current state.  I ended up seeing him after killing myself—body and eyes—doing online research non-stop following the initial diagnosis last month.  Forget the worst-case scenarios out there unless you have advanced KC.  I discovered a procedure known as corneal collagen cross-linking (CXL) that is awaiting FDA-approval in the U.S.

For information on CXL, click here.

CXL is approved everywhere but the U.S., per usual.  This procedure stops the progression of keratoconus by strengthening the cornea and has been available in the EU (European Union) since 2007.  After I discovered this, I had to find a way to get the procedure without flying to Europe since disability does not allow for the jet-set lifestyle.  I scoured the internet and came upon some posts from people who were getting the procedure via clinical trials.  I figured I would have to go to L.A., but to my surprise my former ophthalmologist was participating in a clinical trial and my prayers were answered.

If you are searching for a clinical trial for CXL near you, the U.S. government site is here.

So, today I not only went in for the official diagnosis, but also for the screening process to see if I am a candidate for the trial.  I should also mention that since this is a treatment trial, there is a charge of $2,500 per eye, but each trial is different it appears.  Well, what are my options really?  The other bad news is that my doctor is not sure if I am a candidate as they still do not have clear exclusionary guidelines from the FDA, but he thinks my chances of being approved are at about 80%.  There is a waiting period of 45 days per the guidelines and considering the fact that my vision is progressing for the worse so rapidly, we have decided to do the CXL—if I am approved—on my worse eye and I will be getting surgically implanted rings (2 semi-circles) called Intacs in my better eye.  This will flatten my cornea and allow me to have better vision with glasses for now.

For information on Intacs, click here.

Due to my insurance, I need to fail a pair of contact lenses before I will be approved for Intacs surgery.  So, I go back to the optometrist later this week to get fitted for contact lenses and then next week I see my ophthalmologist’s optometrist to get measured for Intacs.

If all goes well after I fail the contact lenses—my severely dry eyes will make me toss them in a day, the plan is to get CXL in the better eye after FDA-approval as Intacs will disqualify that eye from the trial.  In other words, I will get CXL in my right (worse) eye to stop the progression and Intacs in my left (better) eye to improve my vision temporarily until I can get CXL in that eye once it is approved, covered by insurance, and the trial restrictions are a none-issue.  If you are confused, so am I, but the bottom line is that I should be getting Intacs in my left eye within a month if I can get through the insurance loopholes in a timely manner.

What a convoluted process!

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  1. cynthiablue says:

    Ugh I’m sorry that your vision is actually failing. Mine isn’t quite as bad. I was also diagnosed by an optometrist, after trying to get Lazik surgery years and years ago. The 2 or 3 ophthalmologist that I saw at that time just told me they couldn’t do the lazik because my eyes were a weird shape, but they didn’t know what it was. I find it odd, and sad, that they didn’t diagnose my keratoconusat the time.

    • Thanks for dropping by and all your great comments! Ugh is right. I hate misdiagnoses and am REALLY fed up. My vision is actually stable (and improved) now due to cross-linking (CXL), but I wouldn’t have lost as much if they’d diagnosed it right away–my better eye was at about 20/30 still.

      Interesting about the Lasik connection–I do know that everyone who wants vision-correction surgery has to get a topography so they can look for early signs of keratoconus. How could they not tell it was KC and how do these doctors get medical degrees? I sure hope you got the mild KC that never really advances, but if not, CXL is a good option to halt it. Love modern medicine!

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