UK Keratoconus Self-Help and Support Association

hello peop's,
im still new to this site, i put a little message up the other day and got some really helpful responses (many thanks for all the support and advice so far x)
but it did raise a couple of questions for me, so i've sat down and had a read of a few of the posts on the forum and now im in a real pickle.

i was all set, just sitting on a waiting list for my corneal graft, (to be honest the seriousness of the op is just sinking in, now that i know a little more bout it) i am now wondering if i should try lenses again, i did try them some years back, i think i tried gas permeable ones and rigid but could tolerate neither, so at the time cos my KC was not so bad (and i knew very little bout the condition) i just gave up and went back to glasses.i was in raf at time, i left to have baby and so no longer had a eye specialist to visit so i just tried to get by on my own. i carried on like this for about 3 years or so, but it caught up with me, i did lots of things to compensate for my poor vision, but realised my vision had rapidly declined. when i finally went to see a specialist, he said my left eye was bad, right not sooo bad(not sure of any specifics) but said he will discuss a corneal graft for that one after my left eye is sorted. i discussed trying lenses again with him, but he said the left eye was now too bad to make a real difference with any lenses.
so should i take his word?
get a second opinion?
try anyway?
or just go for the op?

i basically just want to get my life on track again to help support my family as i am no longer within legal limit to drive or able to work. x

thanks helen x

Helen,
I know the other guys will be able to give you a better answer on this than me, since I new to this too. I wouldn't want to mislead you with an inexperienced answer but it still seems very open ended. Ie its going to be a little while before you have an op or get fitted with lenses either way. I don't know if you have already checked the benefits or if you are reluctant to but I think you must be entitled to some help. That might really help to take the pressure off while you get the answers you need.

Helen

the questions you ask are the same as questions with which we all live or have lived. In the end, once you have asked all your questions and heard all the answers, it is for you to make your decision.

As I said elsewhere I am an enthusiast for the graft as a useful management tool for Keratoconus when all else has failed, but if you have to wait, then it would seem that there is not much to lose by trying different sorts of lens during the waiting time.

There is such a variety of lenses available now that there is every chance that an experienced fitter will manage to get one to sit on your KC eyes. They come in a variety of materials, and are supported by a variety of lens fluids.

All the best

Andrew

In 2004 when I had to go back to lenses, the opthalmologist referd me back to the optomotrist part of the eye unit.

I was told as far as he was concerned my right eye was beyond having a lens fitted and surgery would be too risky, even for a re graft because of where the KC had developed again in the old cornea. An extremely rare occurance. The reason he referred me to the optomotrist was because they were best qualified to say if they were unable to fit a lens.

Optomotrist said fitting a lens was hard, but he would have a go. KC has been stable for two years now and with the new lens technology available now, my lenses are far more comfortable than when I was first diagnosed in 1988. Solutions have improved too and apart from a slight hick up at Christmas 2005 meaning I now use comfort drops the lenses are realy comfortable and the drops also prevent me having an allergic reaction to Rigid Gas Permeable (RGP) lenses.

Rather than go for a second opinion as such, ask if the hospital optomotrist can have one last go fitting a lens. You can still stay on the graft waiting list so you have not lost your place while lenses are tried. If lenses are then succesful then you can cancel the op.

As has been pointed out in other posts, you have the final say in your treatment and you need to eneter into a partnership with your consultant and the optomotrist.

thanks for your words of wisdom, i have decided i will try and get referred to an optom and try again with lenses whilst i wait, like ya all said wot have i got to lose as im sat on a waiting list anyway.

thankyou all very much for your help

will keep you posted

helen x

All the best

Andrew

Hi heledy24, which hospital will you get refered to? as I had to visit shrewsbury hospital when I lived there last year and did not receive verygood advice from optom just wanted to forwarn you thats all, I do wish you well as been in same boat some time ago now 6 months on from post graft glad I did take bull by horns and have it done, even though I am not working full time yet, I thought of bigger picture for rest of life just to get some inproved levels of eyesight.

Hello,
Welcome!
Since being diagnosed 6 years ago I've been through quite a bit of traum trying lenses which I cannot tolerate or develop allergies to. It took three years for the clinic to accept that I could not wear the lenses because of this, NOT because I wasn't building up my wearing time.
I also worked with small children during this time, and had enough on my plate without lens hassle.
To boot, it turned out I had allergies to may drops and lens solutions.
After 14 appointments in 12 months up until December 2005, the ophthalmologist told me finally that it was time to consider the graft or live without any correction at all.
A month later he said there's next to no chance he'd consider grafting since I'm so allergic that I will most likely reject the donor cornea.
AAAAAAAARG.

There is a silver lining to his particular cloud (so far!)

Next thing I new, they found a different type of lens for me to try.
It turns out it's an old old fashioned real HARD lens made from PMMA.
I've been wearing it for over six months and it's pretty much okay, although not breathable. I wear it a maximum of 6-8 hours a day and take a day off at the weekend where I can to rest the eye.

Don't give up just yet.