UK Keratoconus Self-Help and Support Association

I have KC in both eyes. My left was diagnosed 8 years ago, had a lens fitted, Doc said at the time it's rare to get this at your age it won't get much worse so if you don't get on with it don't worry. I didn't get on with it so I didn't.

It got much worse and 2 docs I've seen very quickly say that needs a graft. I only went to see them when my left "good" eye started getting the effects of KC, I had CXL and so far its stablized.

My brain does a very good job at compensating my vision and generally I don't think about it too much. When I went for an eye test and she put up the biggest letter A that would fit on the quite large screen it was huge but I couldn't see it with my left eye at all, she said erm... can you even see the screen? Then she held up fingers and on her report said left eye can see fingers. So its not good.

I can't read text at a distance, at night street lights are a very pretty light show with large glistening halo's. Walking through London if its not daytime or bright I can't read the street signs they have up high on the buildings. I work in I.T. where I have two large computers screens on my desk. Writing this at my desk (maybe more that I'm thinking about it) I'm squinting a little bit and I see little dots floating across my vision every now and then but thats in my good eye. If I'm helping someone with a computer problem I can't read their screen over their shoulder. Things do seem blurry especially if I'm tired. I know my vision is not great but I live with it without too much discomfort. My doc says he thinks I could benefit from a graft, he also said that worse case you can lose all vision in the eye. So do I put myself through this?

I'd be interested to hear from people who have had a graft and do you think given my situation whether you think its a good idea?

Hi Dom,
I've had corneal grafts in both eyes, and certainly don't regret it. But I was in rather a different situation from yours. I'd already been wearing rgps for about 10 years (7 of those before I even knew I had KC!) so the point at which I decided to go for it was when the contact lenses no longer gave me good enough vision. And without lenses or glasses, I still wouldn't be able to read anything on the eye chart, though my vision with correction is now fine. The stats say that the majority of people still need correction after a graft, though some are lucky and get good vision post graft without any aids. And you might get good vision with specs (with an unpowered lens for your good eye). So it's not an easy decision to make. Did the docs who recommended a graft tell you how thin your cornea was in your bad eye? If it's very thin, then that could be an argument for having a graft.
The other option would be to check out contact lenses again. Things have moved on a lot in the variety of lenses now available for KC since you tried your rgp lens. There are special soft lenses for KC, hybrid lenses (part hard, part soft), scleral and mini scleral lenses. So you might find a lens that would give you much better vision AND comfort.
If you e-mail me anne@keratoconus-group.org.uk your postal address, there's some stuff I can send you which might help your decision - a good talk from a Moorfields consultant on when to go for a graft on our 2005 conference DVD, plus more info on the different types of contact lenses available.
Anne

Yes they said I couldn't get it cross linked as my cornea was too thin. He said there was lots of scarring on my cornea.

I had CXL done privately and amazingly my company paid. When I said to my Doc I would like to get the graft done but I can't afford it for now he said he would give me a letter to ask my GP to refer me to him. I thought that was pretty decent of him so I was about to embark along that path.

You are right though I should look at lens first. I only haven't from the time I had with the RPG lens a long time ago.

My Doc did give me a contact of a lens fitter he recommended. My good eye is still not perfect so I should get that one fitted too.