Graft suggested, what to do...........

[MartinC]

Hi folks,

I have posted a couple of times previously and often have a quick read of the forums when I get chance, but I'm by no means a regular (though I do appreciate the brilliant advice that is given).

So, I am 38 and have had KC since I was 18/19. I have used RGP lenses all the time and at the moment I am using Rose K's. My optician tells me that my corrected sight is borderline for driving, but in his words "the right side of borderline"! I can just about read the first line of the chart with no lenses. My left eye is quite a bit better than my right.

My eyes seem to have been fairly static for some years, as many would expect at my age, but in the last year the vision in my right eye has declined at little, maybe one line of the chart. My optician has tried a couple of diffrent lenses and in the end suggested I go see the eye department at St. James's in Leeds - I did this last Thursday.

After a whole afternoon of various waiting around sessions, I finally saw the consultant, Dr. James Ball. He seems very keen on a corneal graft on my right eye and has pretty much said this is the only option open to me. His argument was that for good sight post graft I would be looking at 2 years. If I got in a position where I couldn't see or use lenses then I would still have the 2 years to wait, so why not do it now? It seems like a reasonable argument! It seems he was almost trying to scare me into the op by suggesting I might end up with 2 years of very poor sight, which I found a little worrying; that said, he was very pleasant and I don't think that was his intention, just how it came accross. . I'm also a bit believer in the fact that surgeons generally suggest surgery to solve problems?

That said, his vision (no pun intended) of being 5 years down the line with two grafts done and implanted lenses giving perfect uncorrected vision was very appealing though! (how likely is this, not very going by accounts of other people's experiences?)

I had always had grafts in the back of my mind as a complete last resort. Of the many blogs etc I have read of people who have had them they rarely seem to be the "easy fix" that the consultant inferred. "2 weeks off work and 12 months of one eye only!". Up until last Thursday I imagined I was far away from needing a graft.

So, what to do? Do I need a different lens fitter, different lenses? or the graft? I am happy to pay for private consultations etc if I thought there was some reasonable chance of a positive outcome. I would also happily travel pretty much anywhere (certainly in the UK) for this.

I'm not unhappy at the moment and lead a relatively normal life. I get the odd bad day of light sensitivity and/or watering eyes, but I manage to work nearly every day and wear my lenses for 15/16 hours. (I do have a pair of specs for TV, but they are like a pair of not very good binoculars which I cant walk around and dont see very well at all!) Ok for watching junk TV in bed when I'm not that bothered about seeing, if that makes sense.

All advice greatly appreciated. As I've said, I could just do nothing, but I do wonder if I could perhaps have slightly better sight with different lenses and I am now also worrying about when the day may come when I cannot tolerate lenses?

[Andrew MacLean]

Martin

Welcome to the forum, although you say you have posted before, we don't seem to have 'counted' any earlier posts. I don't know why!

In my experience, and two year period from graft to good sight is a pretty fair estimate. I am glad that you can still drive, but as you know this may not always be the case; much further decline in your corrected vision and you may be on the wrong side of borderline.

I waited until I was registered blind before agreeing to my first graft, and was over two years before I got back good enough sight to drive.

This is a difficult decision for you, I know.

All the best

Andrew

[GarethB]

Martin,

What I tell everyone is that a graft is a last resort as it often means other otions are no longer available and there is still a good chance you will need glasses or lenses.

That said the aim of any surgery on the cornea is basically to give a more regular cornea so that vision correction is easier.

To me the two years is the time to stabel vision but within that period it is possible to get good corrected vision. My grafts were done 20 years ago and after 6 - 9 months my eyes were changing gradualy, but I could get excellent vision with glasses and a minor prescription change. Then after 2 years I needed no vision correction for a further 6 - 7 years before going to glasses and lenses.

I would be warey of the consultant sugesting graft and implants and you'll have perfect vision. That used to be a common statement and many patients were left disappointed because they could not get perfect vision. I'd be very interested to know from your consultant on what basis he can give you perfedct visionthrough surgery.

We are finding to that optoms are saying they have tried everything when in fact there are options out there they are unaware of or written off without trying. My optom at the hospital was unaware of the lenses I now have and was sceptical about the level of vision I would be able to get. Last visit I went with them and he could see that the soft lenses out performed the RGP's they had fitted me with. Two weeks later and the readings the hospital got were confirmed today. I'd definitly asked more questions from the otom about lenses and more questions from the consultant.

Then you can weigh up the pro's and con's of each so when you make your decision it is informed and later down the line you'll not be asking yourself what if?

Andrew waited until he was legally blind, I waited until the answer to 'What have I got to loose going for a graft?' was Absolutly Nothing.

The decision is harder now than it was 20 years ago because surgical options and lens designs have come a long way.

Have you considered intacs?

If that does not work, you can still have a graft and as you mention your age, KC progression may slow or even stop.

KC returned in my right eye with avengance in 2004 but stabalisedas quick as it got worse and there has been no change for nearly 5 years now.

[Sophie]

Hello Martin,

I agree that of course surgeons suggest surgery - it's what they do! But I had a graft in my right eye a few years ago now, it has been fantastic and meant I could do all the things I ahve wnated to do and never had to compromise anything really. I waited untill I had very little to lose and then I had hydrps and they moved me up the list, but since having it my other eye has got much worse and I have very little useful vision from it, I'm very very glad I had my rught eye grafted when I did, worth the long proces of healing etc.

I have now had an inatc in my left eye (ungrafted, not so good eye!) which has not been successful. Having it taken out soon then goign on a list for a graft having exhausted contacts. I have not tried scelerals in this eye which would be an option, but I hated them! Made me look ridiculous and I persoanlly found them impossible to wear.

I would also try and get refered to conatcts person at the hospital. Sheffield has an amazing conatact consultant. He is called John Whittle and if your close to sheffield maybe it's worth a try? If your in Leeds tho, they might have someone as nice.

Good luck,
Soph

[rosemary johnson]

Hi Martin and welcome.
Agree that surgeons want to offer surgery - and want to carry out surgery. That's what they do.
Most important thing to remember: once you've had a graft, it can never be undone. You can keep trying different types of lenses, even have intacs taken out. But once a surgeon has sliced out a part of YOU and thrown it in the bin, ou'll never have it back.
There are now plenty of lens options to try, and that you might like to think of trying first. The Kerasofts Gareth has, for example, or sclerals that Sophie doens't like and I've always worn.
SOmepeople liek intacs; others don't.
If you can still see enough to read part of the chart lens-less and can be made glasses that do something for you, it might even be worth asing if your cornea is still thick enough to contemplate CXL. (I haven't even been able to see the chart without a lens for years now, and still can't read any of it ith my grafted eye).
You may, of course, have a graft and it all works out perfectly - one never knows till after it's too late to change one's mind.
I was told that it would be about a year to 18 months till the grafted eye had stabilised enough to try correction for it. I was also told that about 50% of people end up with contacts post graft, and another 40% have to wear glasses.
Actually, this isn't strictly so - moany grafted eyes could be fitted with specs or contacts earlier, but the eye is still changing so much that the specs/lenses go out of date amost as fast as the NHS can get them for you - which gets not only frustrating but rather expensive.
If you can find a scleral lens fitter, it is possible to be fitted as soon as a month post-graft, as the fitting of a scleral (clear over the cornea with a tear reservoir between eye and lens) can accommodate many changes in cornea shape. But if you can find a scleral lens fitter in your area, they may be able to fit something that will remove need for a graft.
Remember also that it may or may not be 2 weeks off work, but it is likely to be more like 2 months beofer doing any lifting, longer before doing any hard physical work, they'll no doubt tell you you can never go swimming again..... and months of extra hospital check up appointments, and masses of eye drops, and being ready to dash off to A&E if the eye goes red and sore.
There are also risks to grafts - such as that the foreign piece is rejected, at any time, possibly many rejection episodes; may never "take" at all, get infected, not heal properly or just be a a problem to fit correction to after it has healed.
YOu may develop glaucoma or a cataract, either as a reaction tot he eye drops or as "just one of those things". YOu can also have other adverse reactions to the eye drops, or to the anaesthetic used in the op.
YOu're very unlikely to have as bad an adverse reaction as me - but from my experience, even those who are totally blind in the eye to be grafted DO indeed have things to lose.
OTOH, it could work perfectly and you'll wonder why you didn't do it years ago.
Rosemary

[MartinC]

Thanks for all the replies, it's certianly food for thought.

I think what it has done is make me decide to explore ALL options before going down the surgery route......

There seem to be more bad than good graft experiences posted on the net, but is that just a nature of posters - do the good ones just get on with their lives while the bad ones are keen to post and spend time on the 'net looking for solutions etc?

Oh, Andrew - my early posts were on the old forum I think, which had a slightly different design? Maybe 2 or 3 years ago?

[GarethB]

Martin,

You are exactly right, most sites including this do have more bad stories than good for the very reason you put. If things are progressing nicely you get on with life and feel there is no need for any further support.

Of all the patient groups where corneal grafts is a treatments optkion, it is us with KC that have by far the highest success rate both medically and from a patient perspective in that good vision is obtained corrected or otherwise. I would place myself in that category.

If statistsics are to be believed there should be over 60,000 people with KC registered witht he group in the UK. We don't have that as a vast majority find they can cope very well with their KC but we are here ready if they do find they need support.

The most common poblem post graft is rejection, but I think that is only in a small percentage and in most of those cases it is reversed and no more problems are encountered after that.

Grafts are a big step and I am pleased I've had both mine but with the wealth of treatments and contact lenses available the last thing any of us wants is to think later; What if I'd tried that first? I wonder if that might have helped?

Feel free to voice any concerns you have, asked questions and so on and let us know what you choose and how you get on.

Just like successful treatments often go unreported, succesful advice often goes unreported to

[Andrew MacLean]

Martin

That explains it!

I agree with the others; it is for you to weigh toe pros and cons of any sort of intervention, bearing in mind that doing nothing also has consequences.

I have never regretted either of my grafts, but then I did wait until I had nothing to lose.

Andrew

[MartinC]

out of interest Andrew - how old were you when having these grafts and had your KC progressed quickly?

[GarethB]

Martin,

You are a bit younger than me and Andrew is nearly old enough to be our father