Cornea graft - please help

[Andrew MacLean]

crakerjacker

Welcome to the forum.

You ask good questions, and I hope that you have found reassurance and comfort in the responses here. I would suggest that you write your questions down and next time you have a meeting with your ophthalmologist make sure that you get a satisfactory answer to all of them.

I waited until I was legally blind before accepting my first graft. At the time, and on the basis of all the information I had, I think that my decision to delay was rational. I am not sure that I would delay as long now, but when I did agree to go ahead with the surgery my ophthalmologist answered all my questions, let me return to the waiting room, called me back after about quarter of an hour during which time I had been thinking about further questions and then, after three visits to his consulting room I agreed to the surgery.

Never forget that you are the one who has to make the decisions about your own eye care.

All the best

Andrew

[crakerjacker]

Thanks Andrew

How long ago was it when you had your grafts?

[Andrew MacLean]

I had my first graft in December 2003 and the second in October 2006. My right eye (grafted first) was very deeply scarred so they needed to do a PK graft (the whole of my cornea was removed and the whole of a donated cornea was grafted into my eye). My left eye was not so deeply scarred so they were able to save and use my own endothelial cells (the inner layer of the cornea) so that the stroma and epithelium of the donated cornea were grafted onto my eye.

I now enjoy very good sight in my right eye, and although my left eye does not see so well, with a contact lens I could see well enough with that eye to be able to drive even without my right eye.

My right eye sees better than 6/6 (with glasses) and my left eye sees 6/9 (with a contact lens).

All the best

Andrew

[GarethB]

One thing that helps the longevity of a graft is how ell you look after your eyes.

Just with using lenses hygiene is a must and to be honest regardless of having c, everyone following simple basic hygiene is unlikely to get an eye infection.

Two years after my first graft and a year after the second I was doing work experience for an environmental research laboratory which meant working down sewers, at sewage treatment plants and municipal waste sites and (touch wood) have never had an eye infection in my life.

Full graft is quicker op wise than the partial and there are loads of details of this in the FAQ section of the forum. Basically full graft (only option 20 years ago) is exactly what it is a disc 4 - 8 mm diameter disc of the old corena is removed (some places now use laser) and a new disc from a donor is stitched in place eitehr with individual stitches (I had about 20 in each eye) or a runing stitch. Indivisiual stitches allow for residual astigmatism post op to be adjusted so the cornea heals in the most natural position. Running stitch is supposed to allow the cornea to settle into a natural position and heal normally. Whole procdure oftern takes less than an hour.

Partial graft had the outer two corneal layers removed and leaves the area where rejection commonly starts in place. This is why rejection is so rare in these cases as you have your own tissue still. This also allows for a graft to be done closer to the corneal margins where on a full graft rejection is a greater risk. The procedure takes longer as the layers need to be sperated on the host and donour cornea. Depending on what the surgeon finds this can also turn into a full graft. Stitching the new cornea in place is again single or running stitches.

Of all the conditions that can result in corneal transplant KC has by far the highest success rate and have been done for over 100 years now, so not a new thing.

After care in both cases is eye drops to ensure there is little or no risk of rejection which does occur in I think 2 -3% of cases but as said in other posts caught erly enough are reversised in most cases.

Remember RSVP

R - Redness

S - Sensitivity to light usually

V- Vision changing suddenly

P - Pain in and around the eye.

One or more of these amy mean rejection and a trip to eye casualty is in order. From my experience the doctors would much rather you go down and find there is nothing wrong early than find you have suffered a couple of days and things are so bad they are unable to help.

Other eye drops are antibiotics and as you heal they frequency of drops are reduced.

The eye is a little sore afterwards but in most cases this eases after a week or so, especially if you wear dark glasses. I found the pain far less than when I was getting used to contact lenses.

Remeber that it can 12 - 18 months for the eye to recover to a pint vision correction may be considered. It seems a pretty even split between those needing glasses and those needing contact lenses to see normally. The idea of corneal transplants just with intacts or CXL is to provide a corneal surface whereby vision correction is easier.

I do know of cases where post graft people no longer needed visio correction. This was the case for me about 2 years post transplant but by five years post op I was back wearing glasses and 16 years post op back on contact lenses. Never (touch wood) had a case of rejection of infection.

Have a good read of the FAQ section and make a list of questions to ask you surgeon and if possible take someone with you to help ask the questions but to definitly make a note of the answers. Some here have had so many questiosn the surgeon could not answer them all in the alloted appiontment time but did take there list away and at a later date send them full written answers to everything they asked.

Regards

Gareth

[crakerjacker]

Thanks Gareth

Keep going through periods of indecisiveness. One minute i'll be thinking i'll proceed with the graft and then the next i'm thinking i'll leave it and manage as i am doing now.

If i don't do it now will i just be putting off the inevitable? Is it better to have this done now when i am 28 or wait until i'm older?

[Andrew MacLean]

The problem is that we can never know whether our KC will stop progressing. For most people it does: it is 'self limiting', they get to a point of equilibrium and never progress further. If they have glasses or contact lenses that offer them good corrected vision, then they live the remainder of their lives without any surgical intervention.

On the other hand some people have quite an aggressive KC that just gets worse and worse until they become legally blind.

The hope is that treatments like CXL will, in future, be offered as routine. It will do no harm to the people whose KC would have stabilized all by itself, and may provide people whose KC would have been more aggressive the same stability as occurs spontaneously for some.

The problem is that nobody knows which KC is going to progress and which will not.

Do nothing and you might get away with it. On the other hand you may become legally blind.

Have a graft and there are risks associated with that, too.

As I said above, I waited until I thought I had nothing left to lose. Others have benefited from early interventions and have never looked back.

Andrew

[rosemary johnson]

Hallo crakerjacker!
I was offered a graft last May (ie. 2007) - was told that both my eyes were in a condition where a graft would be indicated, that they were hapy to offer me one, and to think about if I wanted to go ahead and which eye I wanted done first. I nearly fell through the floor with shock and horror. I'd long known it might be a possibility one day but had no idea that day would be today (as it were).
Yes,I thought about the risks. I also thought about
a) what were my current main problems, and how much they were bugging me; and
b) what I stood to gain if the graft worked and I had better vision (with contact lenses if appropriate)
I knew full well that if it went pear shaped I'd be kicking myself for ever thinking about it; and if it worked well I'd be wondering why I didn't do this years ago.
In my case, since my eyes were much of a muchness, I had to decide which eye to get done - and it did feel much like "which bit of ME did I sacrifice on a gamble".
In my case, my right eye had the better comfort/longer wearing time from piggybacking with a scleral lens, but the vision was much more confused with multiple ghost images, and tended to deteriorate long before the tolerance was up - I might have the lens in for 12 hours but not be able to read print through it after 5 say. The other eye had a (non-piggybacked) scleral, and could read better and for longer, but the tolerance wasn't so good - and seemed to be getting worse, as if the eye was objecting to having to wear something less comfortable that it's partner.
My main problems were, first, dealing with mountains of paperwork, when it was getting increasingly hard to read it at all (couldn't read the Racing Post in the kitchen in the evenings, it needed good sunlight - but not too bright as I'm also hyperlight sensitive, and flickering sunlight, like on a train going past trees, was both impossible and horribly painful); the amount of screwing up the eys required, and simply the time and effort it took to read anything. What with having a lot of important paperwork to plough though that I'd been really struggling with (fighting planning applications, long story!), and the time and exhaustion, and feeling I was fighting a lossing battle with it as it just uilt up and got on top of me, it was all really depressing!
My other problem was the distorted vision, with the multiple ghost images and everything as a result looking a bit weird and spooky, particulalry in the right eye. I'm a keen horse rider, and I had the choice (having been wearing the lenses one at a time for years, and indeed my eyes didn't (don't?) like wearing different types of lenses in each eye at the same time)....
ANyway, I had the choice when going out for a ride of getting the better, or at least less confusing vision from the left eye, but not have worthwhile vision out of the eye over the shoulder nearest the traffic coming up behind us; or of putting the lens in the eye nearest the traffic, when I could see the cars coming, but everything looked that bit more distorted and spooky. The latter felt safer on the road (and the horse, remember, is flesh and blood and stands to lose rather a lot (!!) if we're in a road accident) but gave me lots more problems when we got off the road onto paths round the fields - if the paths were rough and uneven, or sloping, or the horse was slipping in mud or stumbling on rough terrain - or being naughty, or shying - the ghost-y vision made is much harder to see where we were going, and to relate the visual clues to the info coming in via the seat of the jodhpurs (as it were!) and I found myself and I found myself losing my balance, getting really jittery and nervy.
ANd losing my confidence, and my balance, and doing a lot of getting off and walking.
(This was all made worse because an accident at work a few years before had affected my... well, not strictly "balance", but the bit of the brain that "understands" sensations of being in motion and uses them to keep one's balance (and also my ability to retrieve memories and a few other thigns).
So, I thought, if I had vision whereby I could read without it being a constant struggle, and somewhere nearer normal people's reading speed, life would be so much easier, and if I could have non-confusing shost-y vision out of the eye on the side of the traffic, I might feel both safer and more confident riding the horse, and I might even be able to take up cycling to work again.
Well, that was the theory!
Looking back, the logic still holds, and I still think I was right to opt for a graft, with misgivings. Logically speaking, on the balance of probabilities....
What I should have done was put by coat back on and walk out of the hospital on that particular day, in those particular cicumstances, and will regret for the rest of my life that i didn't.
SO what went right? - until the last week or so, the eye has been doing OK (see the Rainbows revisited -oh no" topic for the last week's little wobbly).
Right from the evening of the op, peering round the edge of the dressing, before the eyelids stuck together with goo, I could tell the unaided vision inthe grafted eye was better than the unaided vision before, or in the other eye. I rapidly came to be using the grafted eye when I had no lens in (though it took a long time to admit this!)
From very early days, it was easier to read print with the grafted eye, unaided, at about 4-5" distance, than with the other eye unaided (at 2") or the other eye with its lens in, except in a very good light. It still is, in fact, and it's getting nearer to 5-6", though if anything it is getting slightly harder as the eye is getting more astigmatic as time goes on. I find I'm reading faster (when I'm not too tired due to lack of sleep or whatever) and have been starting to make a backlog into some of the mountains of paperwork. I got a new lens for the grafted eye - a scleral - just over 2 months ago, with which I could see also 6/5 distance vision (first time in over 28 years!) albeit I had to go out and get reading glasses. The horizon looks fascinating, and without all the confusing ghosting, and I can see landmarks etc in much better time to find my way around. WIth the new lens and reading glasses, I could see what paperwork was in which pile I was sorting through much more easily than I'd done for
So, what went wrong? - well, apart from last week's wobbly, which A&E discovered was high Intra-Ocular Pressure (another post-graft risk) and which they seem to have nipped inthe bud with new eye drops....
There is a lengthy thread about this called "Good luck to Rosemary" - and it's why I didn't want to reply before. What happened to me is very unusual, if not 100% unknown, and I don't know anyone else with KC who's ever had anything like it.
In a nutshell- the snipping and stitching inthe eye went OK but I had a nightmare bad reaction to the general anaesthetic - I had three weeks of the most appalling, terrifying violent psychotic hallucinations (kill the surgeon, killthe nurses, tear the alien piece out of my eye with my fingernails, slash out the stitches with my swiss army knife, kill myself...) which started to come back with the hay fever season when I started to up the ration of asthma inhalers, all og which left me shell-shocked and not myself. It also gave me more typical physical reactions to steroids (included with the anaesthetic chemicals) as puttin gon loadsa wieght, muscles like jelly, getting exhausted at drop of hat), and something gave me a stiff neck with lots of tingly achey nerve-trapped feelings, which is OK now but cost several hundred quids worth of chiropractor's bills to sort out. And what's more, it has done further damage to those things damaged in the accident at work a few years ago.
SO th emotion sense processing is worse than ever. I thought for a long time I'd never be able to get back on a horse again - I now do, but the confidence yo-yos and I get very jittery in strange places or on uneven or steep paths, even witht he 6/5 vision lens in. The idea of improving confidence riding feels like a sick joke now, and I haven't even dared to think of trying to balance a bike again. And I'm regularly finding I can't recall names I know very well really - which puts huge big questions marks over picking up plans to work for qualifications in horse care, or workign with euqine as well as human clients (as a complementary therapist, I mean).
Meanwhile I have this alien PIECE stuck in what's left of my eye, and however hard I try to think of the poor late-lamented donor, it is still total anathema.
I must say again, this sort of reaction is RARE!!!!!!! - I've never heard of anyone else this has happened to, and chances of it happening to you must be remote. However,t here are non-eye possible risks.
In your case, it sounds like you have one eye than is better than the other, I presume the one they suggest grafting is the worse, and the other one better. In your equation, you'd have to work out how much better you can see with the other eye, how much you can cope with using the better eye, how much it doesn't matter if one is worse than the other - and against that, how much it would be of value to you to have good quality binocular vision.
Good luck with your deliberations, and with whatever you decide. Please don't worry too much about my sad saga... it is rare. And there are sme surgeons who do grafts nder local anaesthetic as standard anyway.
Rosemary

[dweezil1968]

I had a left eye graft last November, I had very little vision in the eye, so nothing to lose, it was beyond lens and glasses by then. it went well and so far all is good, I won't bore you with the detail and any particular things that happened to me in isolation for fear of putting you off and scaring you unnecesarily, it is a major op and not a thing to be taken lightly. I didnt react well to a drop they put in the eye pre op, but this can hapen to anyone, and was not a big deal in the end.
op itself was fine and i was home in 24 hours.
you will need a few weeks off work, and after you need to be sensible about bright light, computer use and so on.
you have to be sensible after, use the drops and have regular checks. look for any 'danger signs' someone already mentioned RSVP- this is key.
use an eye patch at night, I now have airline sleep masks which stop me poking myself in the eye at night and also help with sleeping on it (when you turn over in your sleep- also in the summer months having 'total darkness' thanks to the mask is a bonus- i always sleep better with it on.
I had a check up last week and the surgeon was very pleased. one stitch is a little tight but not so bad it needs removing now, so the triple vision i have experienced is down to this stitch, and nothing else
I can already see that everything is clearer.
the stitches should be out in another three months.
so i say go for it! good luck

[cuddly]

hi there

Im having my second cornea graph i had my left eye done in april 2004 and so far thank god everythign is fine and well. I did an issue were i developed a caractract and that was sorted out in october 2007 sine then Im wearing glasses which is amazing as i hated my lenses. I was just wonderin when your graph is? As im having mine down in october the 6th. I know it scary thing when you hear about rejection and everything but i felt the only way forward for me and my life was to take the plung in 2004 and get it down only being 19 at the time i felt living without good vision would hinder my life style and enjoyment thanks to all support form my family and doctors things are better

Good luck with the operation and I hope you have speedy and problemless recovery

Hope we can stay in touch and share are post graph experinces

cuddly

[Andrew MacLean]

cuddly

Like you, I developed a cataract after my first graft, and like yours, mine was dealt with in quite a routine way.

all the best with graft number two.

Andrew