KC Old Timer - Advice Needed

[DeanChalk]

Hi All

I'm 44 and have had KC since I was 18, where I was diagnosed at Moorfields Eye Hospital.

For the last couple of years I've become less satisfied with the vision afforded to me by my contact lenses, so last year I spent some time looking at any 'options'

I went privately to the 'London Vision Clinic' where (after a large battery of tests - including an ultrasound of the cornea ??) the conclusion was that a graft was the only way for me to improve my vision, as I now had some scarring on the cornea and I had particularly steep and irregular cones (causing a number of 'experts' to huddle around my face and coo about how they'd never seen ones like that before)
The good news was that I was a good candidate for a partial / lamellar graft as the scarring wasnt too deep (according to the ultrasound). They explained that a lamellar graft was much better than a full graft as it was less intrusive and had lower rejection rates. Also it was a quick and painless procedure done with standard laser eye euipment, and after the cornea had taken and settled down they could 'sculpt' my eye with the same equipment so that I may not even need lenses - hooray !!
I was offered the opportunity to pay large sums of money and get this done privately.

Unfortunately my fortunes changed and I dedicded not to go ahead, but recently (about a year later) I went to my doctor to see if I could get the same procedure done on the NHS.

I went to the cornea clinic at the Maidstone (Kent) hospital, where after a 2 minute look at my eyes they pronounced that a full cornea graft was my only option, and that there was absolutely no point whatsoever doing a lamellar graft because according to the resident expert - "you'll spend a year trying to make it work, and then you'll end up back here for a full graft - lamellar grafts are a waste of time and never work".

So now I'm completely confused. 2 sets of so called experts have 2 sets of contradictory opinions.

I have no idea what to do next, or who's opinion is most likely to be correct.

Does anyone know how good the bunch of experts are at the Maidstone (Kent) hospital (I have to say I wasnt that impressed by their adversarial stance on anyone elses opinion) ?
Does anyone know how good the 'London Vision Clinic' are ?

Does anyone have any advice at all in this matter ?

Many thanks in advance

Dean

[Andrew MacLean]

Dean

Welcome to the forum.

It is possible that you waited too long to go for a DALK. That said, it is absolutely not the case that DALK grafts never work, but if the scarring had become deeper it is possible that your only option now is a PK.

That said, why not ask for a second opinion within the NHS? If you have got to the point that only a PK will do, a couple of weeks won't make things worse. You are entitled to another opinion, and this is a big step. I'd use every opportunity to make sure that the decision I was about to make was properly informed.

Every good wish.

Andrew

[Sweet]

Dean,

I have always had a lot of scarring and could never wear a contact lens in my left eye because of that.

However, I had a DALK done with Sheraz Daya and though it was five years ago can now see four lines with a kerasoft lens when I only saw a blur of colour before. It took a long time for my eye to settle but I didn't want to go for a full graft. I could always have a full one at a later date if I wanted.

I would agree with Andrew and get another opinion. Maybe they are saying that the scarring has got worse since you were told about having a DALK before, but you can always get another professional before you jump in and have surgery.

Sorry but I haven't had any dealings with the hospital or clinic you mentioned. Wishing you the best, love Claire X x X

[tneedham]

I would agree with both Claire and Andrew, a second, or even a third and forth opinion is never a bad idea.

I passed up my first chance of getting a graft simply because i did not like the surgeons attitude and the way he spoke to me. I also felt very ill informed about my options.
10 months later i had the procedure done with a Consultant who had the patience to answer everything i wanted to know and that i now FULLY trust with my vision.

Your eyesight is prescious, when i was deciding what to do, and faced with the possible financial implications, my father in law (who is a famous statisticion) calculated that it is worth spending 25% of my income for the rest of my life to ensure that i had the best chance of the best vision treatment available on the planet.
All that it really took was to find someone i truly trust with it.
Hope that helps?

Tom

[John Smith]

Hi there Dean, just thought I'd add my 2p...

I've had a DALK graft in one eye, and a PK in the other.

Both required in-patient treatment, and neither used "a standard laser surgery machine". It may also "just" be luck, but my PK eye gives me MUCH better vision than the one subject to a DALK.

Yes, it's true that a DALK is far less likely to reject; my PK has gone through 9 rejection scares (all successfully treated with steroids) but the vision is much better.

I tend to think of a DALK like separating 2-ply tissue paper, and then getting them to join back together. They will join up again, but it will never be as good as manufactured. With a PK, you get an entire working cornea, so you are more likely to recover quicker than with a DALK. The problem with PK grafts though in my opinion is that you only get the endothelial cells that you are given, and some are inevitably lost during the transplant op. With a DALK, your own endothelium remains doing the work, so I suspect that a DALK might last slightly longer.

You have to weigh it all up. DALK = less rejection risk, possibly longer life but longer healing time (2 years?) and potentially not as good vision. PK will have a higher rejection risk and a possibly shorter life (though I know of PK grafts lasting 30 years or more), but with probably better vision afterwards and a faster heal (maybe 1 year).

Feel free to post any more questions here...