C3R Cross Linking

[ThomasH]

Hi there.

I didn't want to start a new topic, and thought my questions would fit nicely in here. I was diagnosed about 3-4 years ago when i was 17/18 by a high-street optician, just like the original poster. Having read about the procedure and various accounts of how it went for people, it seems like it might be an option for me. My KC is fairly slow at progressing and I just wear glasses and visit my optician once every 6 months or so. I guess I'm just after some advice on whether anyone would recommend the procedure? I'm a little skeptical about possible future side effects, seeing as it's a new procedure and nobody really knows. The not knowing is a little disconcerting to me. I have tried taking as little notice as i can to my eye condition because I, quite frankly, hate it. A quick browse online this morning led me to C3R and I am intrigued. Would it be a good idea to talk to my opticians about it?

Thanks

[Andrew MacLean]

ThomasH

Welcome to the forum!

C3R (or CXL as it is now known) is still relatively new. I wonder whether you have been to see an ophthalmologist yet?

CXL is not offered by optometrists, it needs an ophthalmologist. I'd advise that you go to your GP and see if you can get a referral to an ophthalmology clinic at a hospital. It may be that your local hospital is involved in one of the studies underway, and can offer you treatment on the NHS.

Otherwise, I am afraid, it is still a matter of either going abroad or paying to have the procedure under a private consultant.

All the best. Let us know how you get on.

Andrew

[ThomasH]

When I was first diagnosed, I was referred to an ophthalmologist. He just babbled something about KC being "academic" and took little interest from what I could gather. Thanks for the advice. Perhaps when I finish University and get a job, I can pay for it privately. Although I'm not not sure whether getting it done sooner rather than later would be best or not. Thanks again.

[Lynn White]

Hi Thomas,

It all comes down to what you define as "relatively new" and "risk assessemnt". It has been carried out for around ten years now, the earliest procedures being done in Germany. The results from all the studies so far show that progression is halted (only a very few have gone on to needing grafts and it can be argued that those cases were very advanced anyway) and there have been no reported side effects.

If your keratoconus is progressing rapidly, what you have to weigh up are the risks with having it done against the risks of not having it done. Of course, one cannot look into the future, but a rapidly progressing KC is more likely to result in scarring and the possibility of needing a graft than one that seems to be only slightly progressing or indeed to have stopped changing. If you think you are likely to need a graft in the future if you do nothing, then the risks of CXL are small. If you are fairly sure your KC is relatively stable, then the risk of something going wrong is higher than doing nothing.

Knowledge about CXL is patchy in the UK at the moment. In Europe, professionals are much more proactive about it, having seen some really good results. Many now do intacs followed by CXL as a routine procedure and some surgeons are even doing CXL prophylactically before doing laser surgery on high minus cases. I would suggest talking to others that have had it done and you can read up on how a US woman got intacs and CXL here http://tntkcg.org/14.html. She was on the brink of losing her vision entirely and for her the risk of not going ahead was greater than doing nothing.

The main risk in CXL is the UV exposure and that in itself depends a lot on corneal thickness. This is a function of how bad your KC is, so ironically, its safer to have it done when you have little wrong with you.

Lynn

[ThomasH]

Hi Lynn,

Thanks for the reply, much appreciated. With my glasses on, I have pretty good eyesight so maybe going for the procedure is unwise at the moment. Like you say, the risk of something going wrong is higher than leaving it be for the time being. I am learning to drive at the moment and I still have another year at University to go, so I will assess my options after that perhaps. I feel quite lucky compared to some of the people on here since my KC seems to be slow progressing.

The main risk in CXL is the UV exposure and that in itself depends a lot on corneal thickness. This is a function of how bad your KC is, so ironically, its safer to have it done when you have little wrong with you.

So those which have it bad have thinner corneas? Sorry if this is common knowledge to KC sufferers, but like I said before, I have been trying to block this condition out of my life so I haven't done much reading up.

[Lynn White]

Thomas,

Keratoconus happens BECAUSE the cornea thins. Have a look at the Wiki article http://en.wikipedia.org/wiki/Keratoconus

[helenh999]

I am very interested to keep up to date with this thread.

I am 24 and have had KC for 5 years. I have tried soft lenses, hard lenses and flex-edge lenses but because I am a CDT teacher, I work in a very dusty workshop and have had problems using all three. I also suffer with allergic conjunctivitis and hayfever and really cannot get away with lenses, despite my Doctors' pleas for me not to give up on them. I've reached the end of my patience with them after trying for 3 years.

I just feel really desperate to keep up to date with new options and to find out what will be available to me in future. I don't feel that my consultant gives me this information and find it very frustrating. He can be quite short tempered with me and just doesn't understand why I don't try harder with the lenses. I wish I could wear the lenses as my vision is excellent with them but it is simply too diificult if I want to be able to work and to enjoy my normal everyday activities.

I currently wear glasses and my eyes are coorectable to driving standard but only just. It is now "clinically necessary" for my glasses to be tinted to reduce light sensitivity.

Please do keep us upto date on this treatment and how you are getting on as I am very interested to hear more.

[serge_b]

this question is for people who had c3-r done:

I had it done in California, USA. I was seated in a chair, then had a dr manually use an eye dropper to put drops in my eye and then shine a UV light for about 30 min, adding drops every 10 min, i think.

I for some reason thought it would be some kind of machine doing it. Was your procedure similar? Thanks

[Lynn White]

Hi Serge-b

Yes that is how it is done! It is a non surgical procedure in that respect.

Lynn

[Andrew MacLean]

We had an ophthalmologist who came to speak to the Scottish Group. He described this procedure, and it all sounded so inconsequential; it hardly seemed credible that such a simple procedure could produce such great potential benefit. But, there you are!

Heroic interventions maybe make better film scripts, but in ophthalmology it seems the simplest intervention holds the greatest potential for advantage.

Andrew