UK Keratoconus Self-Help and Support Association

It is now about 8 months since i did CXL in my left eye. I had never been able to have lenses so I have head spectacles all the time.
In my right eye I have a transplant and I can see about 9/10 with spectacles. Previous to CXL i saw 7/10 in my left eye. Now I can see 0/10.
I was at a checkup about 6 months after the procedure. The docs said its to early to tell the definite result. Now 8 months after the procedure I can still not see with the eye. Everything is blurry as hell. I am really worried.
Is any other here on this forum experienced similar situation? Should I expect any improvement in the last couple of months or is my eye screwed?
Please give me some input, I am really worried....

Im so sorry to hear that matey.

I see almost 80 views, is there really no one for could give me some input based on own experiences?

Hi Grim - I am sorry but I really can't offer you words of wisdom here - if you have read my "Anyone Else in The Same Boat" you will know what I mean. The one thing I can share with you is the frustration that at nearly 200 viewings I have had so few comments/responses. I know everyone is busy. I also understand that sometimes to post a reply means facing our own demons but... It does feel like laying your soul a bit bare in a stadium - would be nice to be cheered on a bit though!!! I guess we know many viewings are guests interested, for whatever reason, but not ready/able to respond.
Good luck Grim!
Jez

Very sorry to hear how it has gone. I haven't been through the same, but have been considering CXL in my "good" eye. Have they said anything about the cause? Was there an infection or anything? Have they discussed any other options?

I have never had Crosslinking, and have been criticized here for saying that, even if it had been offered, I wouldn't have agreed to have it.
For some people it is absolutely the right choice, but for others it is not. I am sorry to read about your experience and sincerely hope that things come right for you.
If not, is there any prospect of a cornea graft?

Andrew

Hi Grim,

I am really so sorry... Everyone in this forum feels like a potential “candidate” for having serious KC problems, one day in the future…

The CXL treatments are progressing since 1999, but who really knows what kind of problems could appear 20 or 30 years after?

I am a Medical student, I live in Athens and as far as I know in some countries the KC patients are 10X or 100X than in North Europe. Thus there is a huge experience of CXL treatments, since 2000…

It is very important that a KC patient chooses a specialized clinic or hospital, with over 5 years of experience in CXL and very well equipped for this kind of treatment (i.e. Avedro KXL device).

I was recently treated with CXL in my right eye and I feel well now. I was lucky, as in Medicine everything is a matter of statistics. The day of the treatment, I realized that my surgeon performs almost 5 CXLs per day !!! So I propose to you to visit a very experienced surgeon in your country. Try to find the best, the one who has 10 or 100 publications in the KC research field.

The US NATIONAL LIBRARY of MEDECINE is a safe place to find the best of the bests….

http://www.ncbi.nlm.nih.gov/pubmed?term=keratoconus

Good luck

Epik