UK Keratoconus Self-Help and Support Association

I just don't know what the hell to do, get the graft or not. Today I tried just wearing my scleral lens in my left bad eye and wearing my glasses to correct my right eye. It feels ok, the vision aint fantastic, but it works.

But there is one problem. My mini scleral lenses feel so darn heavy in my eyes, and I think they are giving me headaches! When I put both of them in my eye lids sit heavy on them and I get tired. I also get nerve/pressure pain just above my eye orbits. I rreally want to avoid the graft as I have to get a lumbar spinal fusion in a couple of years and that has its own long list of risks and I dont think I am lucky enough to have two surgerys go to plan. Please some advice.

When I had my grafts I was only a teenager, but my Mum sat me down and we went through how my quality of life had changed for the worse.

Basically we concluded if the graft was not a success my quality of life would be unchanged a many blind people have succesful lives and carrears. Should the graft be a success then I would have a life that would be considered normal. The process did take a lot of soul searching and I was glad of the support from friends and familly.

I had back surgery before my grafts due to a car accident before my vision was at the point of not being able to drive. After the back surgery I wwas told I would always walk with a limp and by my 30's I would need a stick. I'll be 40 next year, I don't walk with a limp or a stick and my grafts are 20 years old.

I ma a firm beleiver in maintaining a positive mental attitude and I am convinced it has helped me.

All the best.

Gareth

Hi Jamesar,
I guess I'm not in the best position to offer impartial advice here! - but a few thoughts that i hope will help.
First, have you talked to a) the eye surgeon about the prospect of spinal surgery not long after a graft and b) the spinal surgeon/consultant about any possible implications on future back surgery if you've had a transplant not long since. And possibly c) also their respective anaesthetists. Possible areas of concern eyeise might be not only rejection, but also anything affecting the eye pressure (IOP), drug interactions, having to lie face-down for a long time....
They may or may not be bothered about the two so long as several months apart.
Are the eye people keen onrecommending the graft and trying to encourage you? - if so, you can do worse than asking them why (well, OK, you've probably done this).
I came up with a 3-point checklist for people wondering whether to go ahead or back out of an op - to which I later added a Point 0 and a Point 4.
[0: is for op day itself, and for people who've been asked to fast before a general anaesthetic and is whether they're too dehydrated to be able to think clearly.]
1. Logically speaking, on the balance of probabilities, is this procedure the logical way to go?
- this would cover things like the potential gain in eyesight (12-18 months later, probably with lenses or glasses fitted), against risks of the graft rejecting, not "taking", going cloudy, the eye getting glaucoma or other problems, or not getting any better vision after all. And don't forget non-eye risks - whether of possible impacts on future back surgery, bad reaction to drugs/anaesthetics, problems iwth employers over time off work etc etc etc.
2. are my reservations based on general concerns about grafts, that the professionals should know ore about than me, or are they based on things about me in particular about which no-one can know as much as I do?
- this might include concerns about the back, too, and other factors - such as risk aversion, your feelings about your own eyes and how well you are coping, and others.
3. if this were the USA - or the vet's, take your pick - and I had to pay the bill, would I be happy to sign the cheque?
Cynic? Moi??
The No 4 recently added is about how well you know and get on with the consultant - something like...... "Would I really want to be lying wide awake and banned from moving a millimetre which this bloke(ss) cuts me apart? - and if not, do I want him/her doing it while I'm asleep?
Last ly (for now) I can only echo what's been said before about irrevesibility:
- as long as you haven't had a graft, you can always consider it again inthe future. Once you've had it, it can never be undone.
Rosemary

Jamesar

For what it's worth, I waited until I was legally blind before I let them transplant tissue into either of my eyes.

Was I wise? Probably not.

Would I have waited as long then if I had known what I know now? Maybe not.

Do I regret waiting until I had nothing left to lose? ABSOLUTELY NOT

Never forget that you make the decisions about your eye-care. You have to balance the potential benefits of any treatment against the potential draw-backs. Talk to your ophthalmologist. Ask every question you can think of, however 'silly' you think it may sound. Ask for time to think about the answers you have been given. Then ask more questions if you are not sure about the answers you have been given.

When you do make up your mind your decision will have been informed by all you have read and all that you have heard. If you decide to give consent to the transplantation of a donor cornea, your consent will have been well informed. If that is your decision you have the good wishes of everybody here as you go forward.

If you decide to delay, then that decision also will have been informed, and again, you will have the good wishes of everybody here.

All the best

Andrew

All the best

Andrew