Is crosslinking the right option?

[rascasse]

Hi I'm new here. I have been reading the site and the forum a lot since I was diagnosed with Keratoconus at the end of last year. It is good to know that people go to such effort to help those in similar positions. It was all thanks to the optician in Specsavers telling me why he couldn't fix my vision with stronger glasses, and referring me to the hospital that I got my diagnosis.

Right now, I can see very well through my left eye with glasses or a standard monthly contact lens in, but my right eye is much worse. I can read the text I am typing now clearly with my left eye but it is a complete blur with my right. I have been provided with a lens for my right eye that has no prescription and surprisingly it helps a bit, but it is never close to what I can see with my left eye. Often I just wear my glasses because it is much less hassle to put them on than it is to put the lenses in.

I have been to the hospital twice now for check ups with the consultants there. Three months ago they confirmed that I had the condition, and this week they have informed me that it is getting worse and that I should have cross linking performed as soon as possible.

They said it would cost around £1000. Is this a reasonable estimate?

Having read the forum it seems there are lots of treatments available, but I don't understand them all. Can anyone help? I'm worried that if I have cross linking done, I won't be able to then have any newer treatments that actually correct the vision.

I also don't understand why some people have it done "epi on" and some people have it done "epi off". Surely one treatment is superior to the other?

I'm also worried that having this done will prevent me from doing two things that I absolutely have to - my job, and driving to it! I work in software development, so I have to look at a screen all day. How long does it take to recover from this, and is it okay to drive during the recovery period?

Thanks everyone.

[Anne Klepacz]

Hi Rascasse and welcome to the forum!
If you e-mail or PM me your postal address, I can send you our information booklet on KC and the DVD of our 2009 conference, which covered the current options in more detail, which will give you better information to make your decision. There are always new options coming along, although of course the newest one have little evidence of how effective they are and what the possible risks might be.
Crosslinking is available on the NHS in a very few hospitals. The price you've been quoted to have it done privately is very reasonable. I think most CXL in the UK is 'epi off' which is the method that was originally developed in Dresden. If you've been looking at the forum for a few months, you'll probably have seen that Moorfields Eye Hospital in London is hoping to get funding for a clinical trial of epi on crosslinking which would start next year.
I'll leave members who have had CXL (or have decided not to) to tell you more about their experience. When I was diagnosed it hadn't been invented!
Anne