UK Keratoconus Self-Help and Support Association

Hi,

I am scheduled to have a partial graft to my right eye. This was not advised by my doctor and was a decision that I made myself but now I am worried that I am taking a drastic step and facing an invasive procedure that I (a) don't really need yet and/or (b) could avoid. Currently I have a scleral lens but I do not wear this and manage on a daily basis without it (my left eye being good). I have read lots of posts and info about grafts and sense that they should be seen as a last resort and that in the first instance persisting with a lens solution is a good idea. I am not in any discomfort with my affected eye and the last few times I have been to the hospital it appears that my condition has not deteriorated. I am not convinced that I have made the correct decision to have surgery and am very apprehensive about going ahead with it.

Any advice would be really appreciated ......

Thanks

Jonathan

Hello Jonathan and welcome to the forum,
I can only give you a personal view - we're all different and only the individual can decide what's right for them. But as you say, going for surgery is not a decision to be taken lightly. I've had transplants in both eyes, but by the time I did, I really felt there was no other option for me at that time. I had advanced KC in both eyes and contact lenses no longer gave me adequate vision, as well as being torture to wear. So I don't regret my grafts. But a graft is no guarantee of good uncorrected vision (most people with grafts still need contact lenses or sometimes glasses for good vision). If you have one unaffected eye and the other is stable and can be corrected with a contact lens, then I wonder what your motivation was in asking for a graft?
We had a good talk at one of our conferences from a Moorfields consultant on when to go for surgery. If you'd like a copy of the DVD to help in making your decision, just e-mail your postal address to anne@keratoconus-group.org.uk and I'll send you a copy.
Anne

Anne,

Thanks a lot for your reply. It is much appreciated. I've never really considered my motivation for surgery. I guess that, now I need to do so, I made this decision thinking that (a) I would be rewarded with better eye sight (obvious of course) and (b) I would not require a lens (although I don't wear one now). Now that I'm faced with the anxiety of surgery and in view of the fact I have never actually been told by my consultant that I need a graft I am considering not going ahead. I don't want to do this the day before surgery but equally I do not want to feel obligated to proceed. I would be interested in the DVD to which you refer so will send my address details as suggested.

Many thanks

Jonathan

Hi Jonathan

If you want an honest opion you seriously need to reconsider your motivations. It is by no means "obvious" that you will get better eye sight. Nor Is it certain that you will not require a lens. A lot of people still require lenses the graft generally give a wider choice of Lens but even then it presents the fitter with a different set of challanges.

Reasons for a graft are its not possible to get a lens to fit correctly. You cannot tolerate wearing it for any length of time. Central scarring prevents good vision or there is damage to the cornea such as hydrops. I am sure there are more.

In my case I could not tolerate a lens and was in considerable pain because the corneas outer layer was breaking down. So for me it was a no brainer.

Go back and talk to your consultant. If he or she is not recommending a graft I would be asking what else they have in mind. Remember a graft is very much a one way street. I felt I wasn't getting quality time with the consultant on the NHS so paid £150 to see him privately and spent nearly an hour with him with my wife present so we could ask as many questions as we wanted. I know you shouldn't have to do this but with such a major decision I felt it was the right thing to do.

Sorry to be brutal but it's not a quick fix. I had mine 18 months ago. OK I can potter around in glasses and have (only just) been given daily disposable lenses. There have been different challanges with high inter ocular pressure. This has required regular visits to the hospital and I have to take three lots of drops a day. Having said that I don't regret the graft, but as I said I went into it knowing it the only option.

All the best
Ian