UK Keratoconus Self-Help and Support Association

Hello
I'm new to this forum and am not sure if this is the right one for me but I thought I would try to get some advice. I have been a contact lens wearer for 20 years until 8 weeks ago when I suddenly developed a severe Corneal Ulcer from a small scratch. I have been put on the Graft waiting list but reading some of your results has made me slightly worried. Does anyone have any positive feedback to convince me I need this doing. My sight is not so good at the moment so I'm hoping this operation will help. Also, can anyone let me know how long they waited for their graft. So many questions I know but who better to ask than you.

Hi

Welcome to the forum!

You said you had a ulcer....are they going to wait for it to heal? or has it already healed and is there severe scarring?

Waiting time depends.....NHS - you are lookign at anything from 2 - 12 months.....all depends where you are seen...

The results of Corneal Grafts very!.....however do bare in mine that its a long recovery and a long process and needs attention at all times.......

Generally its thought that grafts are successfull..however that means that the actual grafts are clear and there is no rejection. A patients perspective may be different as generaly they weigh up the vision thats attained post graft..........

J

You wanted something positive about grafts, well not many of us need them and even fewer still need both eyes doing and rejection is rare.

Negatives are rejection, but if cought early can be reversed/treated.

Keep it as a last resort and recovery times vary, mine compared to those here was quite quick, after about 2 - 3 years I needed no sight correction at all and was like this for 3 - 4 years and then glasses were needed. This was due to me being naturally short sighted, KC just complicated things when I was younger.

From the conference about 90% of grafts are still funtioning well after 10 years and abou 80 - 85 are performing well after 20 years. Mine are now 16 years and the grafts themselves are behaving better than I could wish for.

I do not know the statistics for those who need correction after a graft, but I think most are fine with glasses and the rest use contact lenses of one sort or another.

Most on this forum are people who have want for a better word 'extreme' cases of KC in that it is agressive, lens intolerance and sever corneal scaring etc.

The graft sounds worse than it is, it is major traumer for the eye, but as far as the body goes it is a relativly minor operation only taking about an hour.

Hope this helps.

Gareth

Hi, and welcome to the forum. Yes this is the right place!

I had been wearing RGP corneal lenses for about twenty years until I suddenly developed intollerance to the right lens. After several attempts to fit another lens in that eye, they put me on the list for a f
graft. I think it was august when I went on the list, and my operation was in December that year.

They told me going in that there was a two year recovery. Alll my stitches were removed within eighteen months, and I have now been assessed for specs (I ordered them at my optician today). They should give me driving vision in my graft eye. I have very poor sight, even with a lens, in my other eye. I hope that they will put me on the list for a graft in that eye, too.

Truth is, each of us has a different experience. I know people who have come out of surgery with vision good enough to drive. Others, like me, have to wait longer.

I have no regrets either about putting off surgery until it was inevitable, or about having gone through with it in the end.

All the best, and let us know what you decide.

Andrew

Hello there and welcome to the forum!

I have recently had a few ulcers as well and then suffered a really bad infection. Everything has healed well with only slight scarring, but sadly i have lost some vision. I don't think that it was all down to this though so please don't stress too much. My vision is slowly improving as the thinking is i have had to leave my lens out for so long (being five months) and it now needs some time and refitting etc. On the right treatment hopefully it will all heal well for you, just don't forget the drops!

As my eyesight was so bad with my only good eye which then went on to develop iritis making me near blind again, i decided to get a graft done on the bad eye to try to get better vision, this was almost two weeks ago.

On waiting lists etc, i was on one for almost five years (i did move house a lot) but then turned it down as i didn't think it was the right choice at the time. The graft i have just had done was under private care, but for no real reasons other than wanting someone i trusted to follow up my care directly without seeing different people, and also for the whole time issue. I do not see much improvement at the minute, but it is still early days! I wasn't in too much pain for long and am now painfree, so i would recommend it if you really need it doing.

Grafting is a last resort so please try everything else first. I honestly wouldn't think of getting it done on the other eye unless things really did deteriorate and i couldn't see. I have managed very well for thirteen years with one eye and will perservere with lenses once this iritis has healed, so it would only be if my grafted eye doesn't see well enough that i would consider doing it again.

For you on a positive note as you asked! ..... I do not regret having surgery, it is only one night in hospital and the pain really isn't so bad. For you to relate to it, most people are able to take paracetamol and brufen for a few days after which helps, and don't need anything else. There is a lot of follow up care, which i haven't really had yet as it is only a few weeks! LOL!! But as with all surgery after care is about the same so please don't worry if you need to go down that route. There are always people here that you can ask, and i am sure that someone here will be doing exactly the same thing!

Hoping the ulcer heals soon. Take care.

Love Sweet X x X