UK Keratoconus Self-Help and Support Association

Simon

Welcome to the forum. You asked in FAQ's whether anyone else has experienced the return of KC after a graft. As it is only the Moderator who can respond in that forum, I have picked up your question here.

The graft does not cure Keratoconus. Like wearing lenses or other procedures like C3R, the graft is a way of managing the condition, but it is still extremely rare for folk to experience, as you have, the return of KC in a grafted cornea.

I have seen a number of speculative explanations for this, including the possibility that the donor may have had undiagnosed KC. the truth is, however, that as nobody knows what causes KC, nobody can know for sure what causes it to return.

What are they going to do? A new graft, or are you back to the beginning with lenses?

Yours aye

Andrew

Actually, we had a presentation at our recent AGM; Mr Tuft did comment that as there is approx. a 1 in 3000 chance of getting KC, there is probably a similar chance of being grafted with a cornea from a KC patient.

I would imagine that the chances are somewhat slighter though, as those whose KC had already developed would be less likely to offer their corneas for transplant, and it would just be the sub-clinical KCers whose corneas were offered.

I know that Gareth here has had the same thing, so you're not on your own, Simon.

John

Has Simon found his way to the general Discussion Forum, or is he waiting for an answer in FAQ's?

Andrew

I sent him a PM when he posted and I think Gareth also sent him a PM....but I alerted him to Gareth and his same experience....so I think they were communicating

J

that's good. I was just a bit worried that he may not hve found his way round the site, and be sitting waiting for someone to answer him in ?FAQ's : Thanks Jay

Yup, we have been communicating I am no longer the only one. There goes my uniquness

Good, Gareth.

I'd be interested to know how ofted KC returns post graft; the forum has nowintruduced two, which suggests to me thast the phenomenon is not nearly so remote a possibility as everybody kept on telling me.

Andrew

Andrew

I agree......however there needs to be an understanding that, from information available so far, the reoccurence is not a re-occurence in the donor material....but the host corneal tissue pulling on the donor material.........which then says to me....that do we need a process/procedure which picks up the "spread" or KC in the entire Cornea prior to a graft.....and then decide on the risk associated with having a larger graft against continuing with the standard 8-8.5mm graft............and present that to the patient?............now thats what would be good information!!..

I absolutely agree. At the moment the only information that is given about reoccurrence is that it is very rare. Well it might be rare, but that does not mean that it never happens, nor even that the risk factors are well understood.

Again, it strikes to the question of informed consent. That recurrence is rare does not mean that any one of us is not at risk of finding the return of the old KC.

This goes on the list of things for me to raise with my ophthalmologist when I see him at the pre-op assessment ahead of my DALK

Andrew

I think some of this oes back to what we have termd 'sub clinical KC'.

The other complication is that a perfect graft does not exist.

Therefore these two incombination may be hiding the real facts.

Research I have done does show that post 10 year graft a sudden downturn in visual aquety is quite common and surgery is useless.

So far this rsearch never says KC has returned and the reason for such a change is unknown.

However a majority of cases appear to be rectified with contact lenses. Still no figures to correlate number of cases against number of graft carried out in that period so any reoccurance rate is still a stab in the dark.

I have contacted by e-mail many of the people writing these papers but none have replied which is disappointing. Most studies I have found were coducted in the US, so any figures would be US based, different geographies may have diferent results.