UK Keratoconus Self-Help and Support Association

Hello,

Can someone who has had cross-linking done, let me know what their experience was of prescription changes and fluctuations in the months after they had the cxl done?

It's now over 9 months since I had cxl done on my right eye, and in the past couple of days I believe my prescription has changed quite suddenly as I can no longer see so clearly through my kerasoft lens. Even without the lens, my vision in that eye seems to have got a bit worse (but that could be because my eye it tired from straining).

It could just be that the prescription has changed for some reason as part of the healing process of cross-linking, or of course I'm concerned that the cross-linking hasn't worked and my vision in that eye is continuing to get worse.

Has anyone had experience of sudden prescription changes many months after the cross-linking has been done?

Thanks,
James.

Hi. I had CXL in both eyes (2.5 years ago) - one good eye and one bad eye (had wedge resection) in that eye. My bad eye has deteriorated and is becoming thinner and thinner, which wasn't the plan. Thinking back each eye was CXL by different surgeons and I wonder if the worst eye wasn't done properly purely on the grounds that the surgeon who did my left eye punctured it much more thoroughly and I suffered for it (was incredibly painful until it healed). I then had problems with both eyes - they weren't working together and I felt a bit cross-eyed. I was told that after CXL the healing process us very quick, but in reality I think the healing/stabilisation process took months and months. I now had one stable eye and one unstable eye.

Best of luck!

Hi Caroline,

It's been over 6 months since I wrote the original post in this thread. I think for me it took many months before my eyes finally 'settled down' from CXL. The most frustrating thing is that my corrected vision in one of my eyes seemed to get a lot better, and then at the 9-month stage returned to 'normal' again.

It's been over a year now since the CXL and whilst my KC is now stable, there haven't been any noticeable improvements (which I suppose is to be expected).

My personal advice for anyone who's just been diagnosed with KC, is to try and get cross-linking done as quickly as you can. Yes, we don't yet know what the long-term effects are for sure, but on balance I think the greater risk is leaving the KC to get worse and worse and cause endless problems.

Really, it makes me angry that there doesn't seem to be a concerted effort between opticians and the NHS to make sure that those who appear to have KC get diagnosed quickly and to give them the option to have CXL done before their eyesight deteriorates to a significant degree.