UK Keratoconus Self-Help and Support Association

I have booked in for a corneal collagen cross link on my right eye. They said left eye was far too advanced to cross link and would need corneal graft. Anybody who has had a corneal collagen cross link procedure give any advice about what to expect on the day and thereafter, is it painful, general stabilizing period? Kerataconus diagnosed for 3 years. RGP'S for 1 year. Uncomfortable occasionally but vision is good, really prefer a more comfortable fitting. .Please please provide me advice especially on left eye, optomerist told me it has 330 microns epithelium and is too thin to cross link. Is the transplant the only option? Thanks.

Hi and welcome to the forum,
I hope you'll get some replies from people who have had crosslinking. But also if you put 'crosslinking' into the search on this forum, you'll find lots of posts describing people's experiences. As for the other eye, a transplant is usually only done if contact lenses can no longer give adequate vision or if someone is completely intolerant to contact lenses. So the majority of people with KC never get to the point of needing a corneal graft. And there are a variety of lenses for KC these days. If you'd like some of our information (booklet about KC, DVD about the various options) just e-mail anne@keratoconus-group.org.uk with your postal address and I'll send it to you.
All the best
Anne

Thank you for your reply Anne. My vision is decent with RGP lens in left eye.
I am just worried though that there's significant scarring and it is very thin(330 microns).
It is progressing at a significant rate. Do you think the graft would only be required when the
the vision level is poor ? If needed it would be something I may do in the future.
How's the recovery period of it? Are you able to get on with normal activities?
Do most people still require lens after graft ?
Thanks

I guess a very thin cornea might be a reason to have a graft, but that's something to talk to your specialist about. It's encouraging that you're getting good vision in that eye with a contact lens. Yes, most people do still need to wear a contact lens after a graft, though some will get good vision with glasses. Things like heavy lifting and contact sports have to be avoided for a while after a graft, but otherwise you just get on with your life! How long it takes to get good vision back varies enormously - sometimes 3-6 months, sometimes a year or two, or until a contact lens can be worn again. So it's not a quick fix, I'm afraid! Hope that helps, and all the best with the crosslinking. Let us know how you get on.
Anne