epikeratophakia for KC

[david collin]

hi I have just joined you site.
About 15 years ago I had an epikeratophakia (donated graft ontop of my cornea) for KC in both eyes. The vision had been good and in fact improving until a few weeks ago when I got an infection/ulcer in my left eye. after steriods and antibiotics the infection has cleared however the vision is terrrible and the consultant seems to be saying that ths is caused by the KC behind the graft and may not improve. Has anyone else had experience of this type of graft and how is it holding out and can anyone recomend a consultant, for a second oppinion, in the westcountry
thanks
david

[GarethB]

Hi David,

Welcome to the forum.

I have not heard of the termanology you referto, but a partial graft is where the top part of your cornea is removed and replaced with donor material. This is commonly called DALK and many here sem to of had a success.

The other type is full graft (penetrating keratoplasty) where the whole depth of the cornea is removed and replaced with donated material.

DALK is better if the KC is close to the cornea margin and rejection is apparently much reduced. It also supposed to be easier to get the correct shape oft he cornea.

Full graft is often done where there is deep scaring through the layers of the cornea which need correcting too as a result of the KC.

My full grfats are about 18 years old and as it was impossible to asses if KC was present at the corneal marging, a 7.5mm disc was grfated. About the largest you can safely go without risk of rejection. Eighteen months ago in my right eye the vision deteriorated and this was due to KC back at the very margin pulling the gaft out of shape. This is now corrected with corneal RGP contact lenses. Last 6 months have been troublesome, but now I see 6/5 in both eyes, before christmas with the same lens I could not see the eye chart.

Some American research suggest that it is more common than we think for the sight in post 10 year grafts to deteriorate where surgery is no use and where we must perservere with lenses as long as we can.

On the plus side, after initial deterioration, my sight has stayed stable for eighteen months now. So just like KC, your situation may stabalise and be corrected with the use of contact lenses or glasses depending on your circumstances.

What I have found cases like mine is extremely rare and if you are in the same situation, you are only the second one here on the board, but everyone here has been very supportive nad helped me get back where I am today so that I can manage regardless of my level of vision.

Hope this helps.

Regards

Gareth

[Louise Pembroke]

That's really interesting, I've never heard of that procedure, can you tell us why this was done for you. Does it slow down the progression of KC? Do you wear lenses? What is your sight like?

[Andrew MacLean]

David, welcome to the forum

The only other person who had ever spoken to me about epikeratophakia was a woman whom I met about thirteen years ago. She had the procedure, but later suffered a severe deterioration of her graft and had a far more radical graft of the whole cornea and some scleral tissue carried out.

anyone interested in epikeratophakia can read more at

http://dro.hs.columbia.edu/epikeratophakia.htm

Andrew

[Anne Klepacz]

Welcome David! One of the speakers at last year's conference talked a bit about epikeratophakia (John and I are currently working on a DVD and booklet of the conference which should be available later this year). As you say, unlike DALK or a penetrating graft, it doesn't involve any of the existing cornea being removed - it was described as a 'living contact lens'. We were told that the procedure fell out of favour because it didn't seem to improve the vision very much for most people, so it's good that you had such good results for so long. My understanding is that as you haven't actually had a graft, there is no reason why one couldn't now be done to improve the vision in the eye with problems. (I'm sure an expert will correct me if I'm wrong on that).
The KC Group does have various booklets available for members so if you'd like copies (and want to make sure you get the next conference writeup) do contact me - that goes for any other newbies to the forum who haven't also joined the postal mailing list.
Anne

[david collin]

thanks for your information and feedback, very helpful.

I managed to contact the surgeon who carried out the origional graft (Bret Halliday) and whilst he does not do grafts any more, he recomended a surgeon in Bristol Stuart Cook and I hope to be seeing him shortly. Has anyone had a graft done by him?

15 odd years ago I had the epi graft rather that a penetrating graft as I was working at sea and was advised that if a rejection did occur and I was unable to get to hospital then the epi graft could be redone after a rejection as none of my cornea was removed whereas a penetrating graft, if left would be problematic to redo.

It is possible that the KC under the graft has now got to the stage where a full graft is the only option.We shall see!
David

[Andrew MacLean]

I think at one time they did not like to attempt to re-do 'penetrating' grafts, but I'm not sure that this is such a problem now .. things move on!

All the best when you see the ophthalmologist in Bristol

andrew