UK Keratoconus Self-Help and Support Association

Just watched through the first talk in this seasons newsletter DVD where timescale on CXL was mentioned. I kind of wish I hadn't!

Seeing as though he describes anything less than 20 minutes to have a lesser effect on your eye... my exposure time was just 10 minutes, because I was told it was a new 'higher power machine' which I now know isn't really the point and doesn't help at all! In fact, quite the opposite. I wonder, are these machines adjustable?

I'm yet to have my second eye done and would like to inquire if they could increase the time spent under the UV light. For anyone that hasn't watched the DVD yet, the reason behind this is that it's the reaction with oxygen that makes the treatment work better. Less exposure time... less oxygen involved

are you still happy with your decision to go ahead with it? I am waiting for my consultation for CLX

My vision is still worse than it was before I had it done (two months in now) but I just had a check up on it and he said it was good news, as my astigmatism has been slightly reduced. Meaning once it's settled (in about another months time) they'll start the contact lens fitting process again and I should see slightly better results. I have an appointment on the 24th September for a CT scan which should tell me if my keratoconus has stopped progressing in that eye... so fingers crossed, I'll report back!

thanks and how are you manging without any contact lens? Have you been able to go back to work?

You're able to start wearing contact lenses after a month (for soft lenses, RGPs is more like 3 months) and it's okay... ish. But I wouldn't be able to read etc. without the support of my better eye.

This is what worries me about getting my better eye done! I'm going to be relying on my poor eye I think the recovery time would be a lot longer...

I can't remember exactly how long the UV light exposure was for my cross-linking, but I do remember that for my 2nd eye a newer machine was used and the light exposure time was a bit shorter than for the first. Nearly 2 years on, and the KC in both eyes has stabilised, so that might offer some reassurance Olly!

Regarding exposure to oxygen, I know some people have said that this could be a problem with 'epi on' CXL and that's why some consultants supplement oxygen into the cornea during the procedure. But if you have normal 'epi off' CXL, even with a newer machine, I can't see that lack of oxygen would be a problem.

There is an explanation on the DVD but it's part of an hour long speech lol, so I can't rely it all here... did you get the newsletter yourself? Hopefully I'll be alright anyway.

James, I'm sure I've asked this before, but seeing as though I'm now actually in this situation... did you find you needed a new prescription after a few months of CXL? It just worries me a bit that my vision is still worse than before I had it performed, but hopefully a new prescription will sort that out.

I'd say my vision was worse for the first 3 months after each CXL and then it settled back to where it was before the CXL, so hopefully over the next month things should get a bit better as your cornea recovers.

In terms of prescriptions, it's difficult for me to say, as before the CXL I wore glasses (which had reached the point where I didn't get good vision out of them) and then after the CXL I moved to contact lenses. The prescriptions are worked out differently so I don't really have any comparison. What I found was that when I moved to contact lenses, I couldn't move back to glasses easily as my eyes just couldn't get used to the very high prescription again, so now I don't wear glasses at all.

Do you wear RGPs or soft lenses? I found I couldn't move from RGPs back to my glasses... but with soft lenses it's not so bad.

I wear soft lenses Olly, but what you're mentioning is a different issue. Sometimes with harder lenses, they mould your eyes during the day so that when you take them out at night it takes a while for your eyes to adjust back to wearing glasses (this is called 'spectacle blur'). I've never had this issue with soft lenses.

Rather for me, when I was wearing glasses before I had cross-linking, I think they were really straining my eyes. So when I stopped wearing glasses and switched to contact lenses after I had the CXL done, my eyes 'relaxed' a bit more (even though the vision still isn't great), and I found I couldn't go back to wearing glasses at all. Even when I've been for a glasses test since then, I can't get anything which is much better than my vision without glasses.