UK Keratoconus Self-Help and Support Association

Hi, I hope some people out there can help me out??

I have had keratoconus for a long time, but in the last 2 years, my vision has deteriorated and I have developed some scarring to the cornea in my right eye. I have been trialling scleral contact lenses which are really comfortable and have improved the vision in my right eye, which is great but my surgeon is suggesting a corneal graft... i have been reading some users experiences in this forum group and now I am not sure whether to go ahead or not... The recovery period does sound quite daunting...

I am 34 years old and he also wants to carry out collagen cross linking in my left eye as I am borderline for having this procedure done to stabilise my cornea. I was happy to go ahead with the cross linking, but have a number of things buzzing around my head, such as How long will I be off work for?
and How long before i will be able to drive again after both procedures?

I work in veterinary practice and have my own horse.. i am allergic to the usual things associated with this condition and I am even considering selling the horse as not sure how I would cope.. I also have a 40 mile commute daily - will this be achievable post-operatively?

I have been somewhat assured by reading other people's experiences, so this forum is great.

If anyone has any suggestions or advice, i would really appreciate it..

Should I go ahead with the cross linking and worry about the corneal graft at a later date?? i am not getting any younger???

Thanks

The dilemma of whether or not to have surgery is one that many of us face, and it's such an individual decision. And of course, surgeons, because they're surgeons, will suggest surgery, while optometrists will try their hardest to give us the best possible vision and keep us off the operating table! I'll leave the people who have had CXL to comment on that. As for a corneal graft, if you're now happy with the vision the sclerals have given you, then it doesn't sound like it's a decision you need to make urgently. Although it would be worth asking your surgeon about how thin that cornea is, and whether that influenced the advice to think about a graft now. I had corneal transplants in both my eyes (2 years apart) when I was just a couple of years older than you. By that point, my vision even in contact lenses was poor, I'd had to give up driving, I was struggling to cope with full time work, the lenses were extremely uncomfortable (I was never offered sclerals and didn't know they existed!) so for me the decision was a no-brainer. My post graft journey was a long one in terms of getting good vision back (though I was back at work 3 weeks after each op) but again it's a very individual thing. Some people get the benefit of better vision 3-6 months after a graft. As on all forums, you get more posts from the people who've had problems along the way while the ones for whom everything went smoothly often don't come back to tell us about it!
So of course there's no easy answer to your questions.
If you'd like our information booklet about KC do e-mail your postal address to anne@keratoconus-group.org.uk and I'll send you a copy.
All the best
Anne

Hello and welcome. I come from the other perspective of having CXL performed on both eyes, but no grafts.

After my first one I was ful of recommendation; it went really well and my vision actually improved slightly because of it. I was back to work within a week, and driving within two.

However on my second one (on my good eye, unfortunately) things didn't go so well. I suffered severe corneal hazing and as a result, I've currently lost around 8 lines on the Snellen chart. It's been just over 4 months now and I haven't driven since, although I will attempt it soon as my confidence is slightly better during the day. At night it's absolutely impossible. I was told the older you are (old being 30 when it comes to keratoconus) the more likely you are to develop problems... but then again I was also told hazing ususally only occurrs in advanced cases where the cornea is very thin, but my eye was only moderate!

It's a really hard choice. With my right eye it was absolutely the correct choice, with my left eye I regret it more than anything.

I delayed my corneal grafts until I was legally blind. Once I decided to accept the procedure, I was happy with the outcome and regretted neither the decision to delay nor the decision to go ahead.