UK Keratoconus Self-Help and Support Association

Hey guys. My name is Dan, I'm 24, and was diagnosed with KC in my left eye back when I was 15. It progressed quite quickly, and I had a corneal graft a few months before I turned 17. Susequently, I have had refractive surgery performed, and just under 2 years ago, a Verisyse intraocular lens implanted. I have pretty bad allergies, and after the work done on my left eye, it is *very* sensitive, and as such contacts are out of the question

The thing is, my vision has only marginally increased. I cannot even make out the top letter on an eye chart. I was told that the hospital had "given up and called it a spare" (those words were indeed used - I assume due to funding, as suffolk are heavily in debt). The sight in my right eye is respectible, but has been slowly deteriorating for the last few years. Visual artifacts are present - prominent halos present around lights, especially in the evening, double vision, trouble focusing etc. Just as in my left eye all those years ago.

The optometrist who originally diagnosed me about 9 years ago is of the opinion that there is definite KC shadowing present, but the specialists ( I rarely see the same one twice :/ ) at my local hosptial have no such concerns - Putting my issues down to eye strain...

So I guess my question is, where do I go from here? Over the last 2 years I've essentially adjusted to the fact that I'll never be able to watch Jaws 3d in all it's glory But should I have to put up with blindness in my left eye? And what if my optometrist is indeed correct, and have KC in my right eye too or my right is damaged in an accident? I'm pretty sure that you guys inderstand how I don't want to end up!

Should I go back to him for another checkup? (it's been a couple of years) And what about my left eye? As the NHS isn't an option, Is private treatment a viable solution? (if I can find enough funds that is ) It's been 9 years, and have adjusted well, I guess due to the fact that I was so young. But it's not getting any better, in the case of my right eye, slowly worse, and the older I'm getting, the more I am realising that things indeed don't last forever (including corneal grafts).

Thanks for reading. Any advice would be most apreciated!

All the best
-Dan

Hi Dan welcome to the forum.

Going private is an option, but in my experience you still end up seeing the same people! You are also entitled to select which hospital you go to (you can choose from 4 I think?), so there may be another corneal clinic you can go to.

I know you say contacts are out the question but what about a scleral lens?

This are larger than corneals and would 'vault' the area of the graft, so not touching the cornea. I have found that lubricating eye drops and avoiding preservatives in as many of the lens solutions as possible helps with sensitivity of my grafts which are nearly 20 yeasr old now.

Hi Dan and welcome to the forum. Sorry to hear that your corneal graft hasn't given you better vision. But most people still need correction after a graft (some manage with specs, others need contact lenses to get reasonable vision). Have sceral lenses ever been tried for your grafted eye? Some people who can't tolerate rgps do very well with sclerals. And yes, if your other eye is changing, it is worth getting things checked out again. If your local hospital says they can't do any more for you, another option would be to ask for a second opinion. These days patients have the choice of which hospital they are treated at, so you could ask your GP if he would refer you to Moorfields or if that's too much of a trek, maybe Cambridge. There are new options becoming available for KC such as Intacs and C3R. These aren't yet available on the NHS in many hospitals, but that's likely to change in the next few years. So there may be a number of things that could help your ungrafted eye. If you PM me your postal address, I can send you some of our literature, including a DVD of the 2005 conference which you might find helpful. I'm sure others here will come up with other suggestions.
All the very best
Anne