Eye test worrying me

[Linda Turner]

I had a normal eye test for glasses yesterday, and couldn't see the letters with any of the lenses the optician put in front of my eyes. She gave me a thorough eye examination and looked through my notes which diagnosed KC in 1999.

It never really sunk in at that stage what the matter was as I was already wearing gas permeable lenses and didn't want glasses anyway. In 1999 I was prescribed some glasses but could never see through them properly because they were so bulbous. I went back at the time and told them I couldn't see properly with them without getting eye strain and falling over because everything looked curved.

It's worrying me now with my latest eye test because the optician said that I couldn't be prescribed glasses at all. My eyes must have detiorated quite badly. I've got scarring on the right eye, but my left isn't quite as bad. The optician was surprised that vision is as good as it is with my gas permeables.

She told me the worst case scenario, about the possibility of having a cornea transplant in the future. I'm just wondering now how far off my eyes actually are from needing this to be done and am worried. Perhaps I'm being a bit premature. I'm wondering if my eyes could just stay like this forever, or is it a foregone conclusion now that my eyes are quite bad that I will need this operation. I'm 42 now by the way.

Any idea? Or is it not possible to say?

Thanks in advance.

Linda

[donna]

Hi Linda, I found out I had KC last November, by January I was unable to wear glasses at all and now wear Rose K lenses every day.
If you do need a transplant in the future it seems to me, from reading posts on here that people dont find it as bad as they first thought and it has a good success rate. Its a scary thought though! If you can get good vision with lenses why not just give up on the glasses and wear lenses?

[Linda Turner]

Thanks Donna

Yes I agree that if you can get good vision with contact lenses you don't need to bother with glasses. It's just the times when I occasionally get an eye infection that it would be handy to be able to wear glasses.

I'm also concerned in case my eyes start to reject the wear of gas permeables, as I have been wearing them for many many years now.

I have been reading about the operation for a corneal transplant. I don't mind having it done if I can be given a general anaesthetic. I would be absolutely petrified to be awake.

I also read that there aren't very many donors of corneas, which was a little worrying. It's really made me think about becoming a donor for my own organs upon my passing away. I wouldn't want to have double standards and not donate my own organs if I expect someone else to donate their corneas for me. But that's another subject!

Thanks Donna.

[Pat A]

Hi LInda
I wouldn't worry too much if I were you at this stage. A transplant is really a "last stage" treatment and although the statistics can't be relied on only somewhere between 10 - 20 % (depending on who you believe!) of KC patients ever need a transplant. If you can see well with lenses I'd just carry on - there is no point in having a transplant if you are managing well with lenses.

I'm 10 years older than you and I have been unable to wear glasses for a good couple of years now now as they don't give me any improvement in my vision at all even though my KC is relatively mild. But I am not tolerating lenses very well either so it's a bit of a problem for me, but we're working on it!

And if you do end up needing a transplant later, well as Donna syas there are lots of poeple on this forum who can help you understand what it involves, the risks and the benefits. For the majority who have been through it, I've only seen one person post that they have any regrets - most people haven't looked back!

Hope that is of help - and I am sure there will be others who will respond to you with more information than I can give you!

[Michael P]

Hi Linda and welcome.

Speaking for myself, I first wore glasses when I was 16 and believe this was the onset of my KC although it wasn't diagnosed until my mid to late 20's.

I have had to wear rgp's since diiagnosis and am now 57.

I think it is fair to say that most KC'ers will not need a cornea graft and they represent the"silent majority".

I agree with Donna's comments regarding grafts, and nowadays the outcome appears to be very good. You will no doubt hear from others who have had grafts, who can give you more informed advice.

If you get good vision out of rgp's then you are probably nowhere near needing a graft and I really would try not to worry about this as the chances are it will never happen.

You will find plenty of information on this website and I hope it helps to put your mind at ease.

[Linda Turner]

Thanks very much Pat and Michael,

I didn't even give the KC a second thought until the eye test yesterday. I've always got on well with gas permeables lenses anyway.

Long may it continue. I have read that if there comes a time that you can't get on with your gas permeables in future that you can try Scleral lenses which are much bigger but not likely to fall out as they fit under your eyelids.

I'm going to just try and forget about it for now and just get on with life. I'm being referred to the hospital for another check up, but it's only a precaution.

Thanks for the welcome. It's only by chance that I found this forum. Very informative it is too. Brilliant.

Linda x

[GarethB]

Linda

If you were not seen at the local hospital, try getting a referal there. Very few highstreet opticians are able to carry the full range of lenses for KC so it may be you have exhausted what your optician can offer. The hosptal may have a wider variety of optians for you. There are aslo other less drastic surgical optians should none of the lenses work which are open to you befre a transplant.

Transplant is worst case but only about 5% people with KC ever get that far. Any surgical intervention has the aim of providing a corneal surface which make vision correction easier so a high chance you would still need lenses or glasses.

Plus KC is an unpredicatable condition and can stabilise. There are a few of us here who have had stable KC for three years or more.

[Linda Turner]

Thanks very much for the information Gareth.

Yes, the optician I saw the other day is going to write to my GP and refer me to the hospital again just in case.

I had no idea that hospitals could provide lenses actually. Thanks for that.

Kind regards

Linda

[GarethB]

To be honest not all hospitals have a lens clinic. However those that do not often have a list of opticians that are geared up to provide a service similar to that of hospitals with a lens clinic.

Sorry, should have put that in my original post

[donna]

I have to agree that I do miss being able to put my glasses on! esp when my eyes are sore/tired or when I lost a lens. But I will never wear glasses again so now I just make sure I get the best wear time possible and look after my eyes as best I can.