Keratoconus: Yarsky - France

Yarsky's Cross-linking Story

by Yarsky in France

I discovered I had Keratoconus in September 2000. I went to see an eye doctor because my vision was troubled. The images started to "melt". I had trouble playing tennis... At my first visit to an Ophthalmologist's, she said it might be KC. So, later I went for a topography and the hypothesis was confirmed: stage one KC. She said all that was known at that time: glasses, lenses, a possible degeneration and transplant. I was not very impressed or desperate. My imagination did not draw any anxious pictures of a possible future state. Glasses were prescribed and I wore them occasionally at first, then systematically.

At the time, I did not have the habit of looking with one eye to test how it was doing. I do not know how the brain plays tricks: even if one eye shuts down, the other compensates for that and you do not feel anything... I now wish I had that habit!

I went back to see the same eye doctor after a year and a half. Her substitute, a murky person, told me my original doctor had deceased that Christmas... The face of this person expressed nothing but a slight disgust at my demand of checking out the situation with my eyes...Anyway, new glasses were prescribed. I did not order them and decided to see another doctor, in a hospital this time.

I'd like to add that I just started to discover the reality of medicine in France: long waiting times, bad expression on the doctors' faces, especially when they hear you have Keratoconus...

The right eye was hurting, I felt something was not well but I still managed without glasses. I wanted to check it right away, all the same. But waiting times were always so long, like a month and a half... So I started to look at private doctors. It was already 2003!

One day I got an appointment the same day I called. I discovered the same doctor that I met at the hospital, with a different attitude. My Keratoconus had advanced in the right eye, sending her into a panic, which was disgusting... I called her a day later for a certain paper... her substitute, reviewing my file, had some desperate notes of panic in her voice... I put the phone down!

In a week or so, I found another doctor nearby. It was quick. Contact lenses time had come! Along with visits to a contact lens lab. First couple of RGPs... Bad time.

In June of the following year, I flew to New York and then Chicago. Really bad cities for contact lens wearers, I think. Wind, insufficient humidity, etc. I took off the RGPs and did not put them on until the following year's medical aptitude test.

Meanwhile, I met new KC friends at the local (French) KC association; I changed the eye doctor and the contact lens lab. It was Rose K on the horizon. Multiple essays. Bad time, insufficient corrections, residual doubling, discomfort, corneal fog after day-wear... I took them off until the following year's medical aptitude test... The situation with the eyes was such that the left eye was doing all the work. The right eye gave only bad information about the objects outside. The fine tuning was (and still is!) done by the left eye. Well, that asymmetry was adaptable. I adapted myself to this situation, preferring to see less but feel better... without the lenses, that troubled my everyday life so much.

I was (and still am) living in Paris. I tried to visit the best eye clinic in France. I waited three months for an appointment. The visit was short, disgusting, new contact lenses were prescribed...

Then Internet time came... French KC forum... Surfing... Some news on Mini A.R.K... This subject is a "no-no" subject on the French forum. I did not know much at the time (summer 2004) about the cornea. And the method seemed weird to me. (Now I know, after 2 years of reading articles on the subject, that it is all very possible and may be an option for the early stages).

Then I found X-linking (CXL) pages, X-linking articles, X-linking news... the horizon was getting clearer to me. Why? Because I started to read articles from the internet. I bought articles myself. Subjects such as corneal structure and functioning, biochemistry, etc. etc... I think, I hooked onto this procedure because it seemed to me that I understood it intimately, being that I am a physicist. I found in "The Cornea" review a short note by the editor (Kaufman) that was saying X-linking was still experimental, but very promising. The majority of links were pointing to Dr. Boxer Wachler from Beverly Hills. But the research was coming from Germany, Dresden University Clinic... The French forum was very reticent about this technique as well.  French specialists heard nothing, said nothing... a wall of rejection.

I was looking for a X-linking experience, when I found kcglobal.org, the site that matters a lot to the KC patients and me personally. I found what I was looking for: the first internet report on X-linking and I found my way to it. It was June 2005. I contacted Dresden. I made an appointment in July. I went there. The team of doctors was very friendly and attentive. So we decided to go ahead and operate my right eye, the worst one (-11D in myopia, 3-4D in astigmatism, 440 micron central pachymetry) and leave the left one for the future.  I'd like to add that they explained to me that the procedure was still "experimental" but had been done since 1999.

The major risk - since the epithelium is removed - is that of ocular infection. But this risk is reduced by the use of antibiotic drops. Otherwise, I was told it hurts for a day post-op. So I did it. I was alone, nobody supported me, apart from the kcglobal.org forum friends... No problem. One week later, the eye was sore. The following month it was still a bit light-sensitive. The corneal wound healing process is always accompanied by a corneal haze which scatters the light. The healing time table post-op is like this:

1 week - 3 months - 6 months - years

One week = epithelium closure.

3 months = corneal wound healing process, slight haze, keratocyte repopulation.

6 months = corneal stabilization in a new shape, smoother and flatter than before.

Years = time to enjoy the absence of the KC progression but a possible chance of slight reversal of KC in the right direction.

Two months ago, in April 2006, I went to Dortmund and had my best eye operated on.

I did it from a prophylactic point of view, to reinforce the cornea of my best eye... to continue to live as I want to and not as keratoconus might dictate me to live.

At this time, France was not yet doing the procedure. It started to, however, at the end of May, in Toulouse. But personally I could not wait.

All content is subject to change from first appearing and is intended as an informational series and should not be used as a substitute for medical advice.