Just went on corneal graft waiting list

[magictime]

Hi all

I posted here a few months back because my optician had detected an increase in astigmatism in my good eye (the one hitherto pretty much unaffected by KC), and suggested I go back to the hospital in case it was a sign of KC progressing.

Anyway, I've just been and it turns out KC has indeed started working its magic on that eye. (Vision's still very good with specs at the minute, though.)

Meanwhile, however, my OTHER eye has got so bad it's gone off the scale - the orb scanner printout (the 'topography' type thing with the colours to indicate steepness - sorry, don't know what it's called!) had big patches where instead of ominous red, there was no colour at all!

So the thinking is: get a corneal graft done in that eye asap so that the vision in it is as good as possible before my other eye really goes downhill. So I'm now on the waiting list.

Funnily enough I'm not so much dreading the operation (although - eek!) as worrying about the long-term ups and downs in my vision. At 34, I'm just about to start a PhD that I hope will lead to a career in academia, but I can't help thinking I could easily end up unable to read for months on end (or for good) - which would pretty much scupper the whole thing.

Any words of wisdom? Do you think I'll be able to read and write all day, every day while recovering from the op, or is that just too much hard work for dodgy eyeballs? Long term, should a graft give me good enough vision to read OK?

So cheesed off... I know that in reality I'm better off for having had one reliable eye for all these years, but I still feel a bit cheated that it's just started to deteriorate as I hit the age where progression normally slows down.

It's also a bit weird that I'm going straight from specs to a corneal graft without the years of fiddling about with different contact lenses... though no doubt there'll be plenty of that to come!

Oh well.

All the best everyone, just wanted to vent to some people who know what I'm talking about really.

[GarethB]

Hi Magictime

There is no way of knowing how quick the other eye will develop, what I would say is don't rush into the graft route as sclerals might help and if the cornea is thick enough intacs might still be an option.

I started uni about six weeks after my first graft and with a very uncomfortable lens I could get the top line or two on the eye chart. The degree was enviromental microbiology, I recorded my lectures and wrote them up later at my leasure. The second eye was grafted during the holidays between year one and two and with vision in one eye I completed the first year practicals as well as doing the normal second year course work. This was before everyone had a computer so we are going back many years now.

What you need to remembre is that universities have to comply with the disability discrimination act and most places have help for visually imapired people. There are loads of blind/partially sighted people who get degrees and Phd's with no problem at all so just because you are recovering from a graft in one eye and while you get good vision in the other with glasses should be no reason to hold off on a phd.

What is your intended phd in?

[Anne Klepacz]

Hello Magictime
I had a graft in eye 1 on my 38th birthday so there are no hard and fast rules on when progression stops! I had 3 weeks off work and then carried on working full time using just my other eye. Admittedly life stopped when I came home from work and had to take the lens out of the ungrafted eye - but then the vision in that eye was a lot worse than yours seems to be if you're currently getting good vision with glasses. And if your better eye should carry on progressing, you've obviously got the option of a contact lens in that eye, so you should be able to maintain good vision in it while the grafted eye is healing and settling down. It sounds as though you've actually only been using one eye anyway for a while, so you shouldn't be any worse off. As Gareth says, universities now offer a lot of help - do print off the Supporting Students with KC leaflet that you'll find on the home page of this site.
Good luck
Anne

[magictime]

Thanks both of you.

Gareth - I don't think, in reality, I'm rushing into a graft (though it feels a bit like that because I'm going straight from glasses). The fact is, that eye's been going downhill for around 15 years now and is in a pretty poor state. The doctor I saw seemed pretty clear that a graft was the way to go, and as soon as possible, just in case my other eye goes downhill fast. I kind of wish some other options had been discussed though, just so I felt a bit better informed - intacs certainly didn't crop up, and he didn't seem inclined to bother with lenses either. (I should say - I've tried lenses in the past, hated them, and always just went back to glasses because I can basically see OK thanks to my one good eye.)

I suppose the logic is - I wouldn't want to spend the next few years trying out different lenses etc. only to end up having a graft anyway but with no good eye to rely on during the recovery period.

Since you ask, my PhD's in philosophy. And I certainly don't intend to hold off on doing it - if anything, I'm more keen to get as far as I can as fast as I can before my eyes get any worse! And yes, I'm sure there would be all sorts of help available if I did start struggling; I'm just going to be spending SO much of my time reading and writing - all day every day, really - I have a hard time picturing the practicalities of it all.

Anne - thanks. I will take a look at that leaflet.

[rosemary johnson]

Hallo magictime!
I think there are two issues here:
- if your "bad" eye is so steeply conical that it won't even register a reading on the Orbscan, then it probably is too advanced for intacs to help, and certainly too far advanced for CXL to be possible.
And quite likely to be difficult to fit with lenses.
So - and without seeing the eye under a slit mlamp, oviously! - quite likely the only thing that will give good vision from it is a graft.
- the other issue is the progression in your "good" eye - and it sounds like nothing has been said about how to manage this.
If there is a chance it may progress fast, but is so far still giving good vision in glasses, it might be worth investigating the possibility of CXL.
Or else a CXL/intacs combination.
This may slow or halt the prgression of the KC, which sounds like it may be a good thing.
Trouble is, if you do it now, you'll struggle to cope while the good eye recovers fromt he procedures, if you can see very little from the bad eye.
But if you leave it till the graft has well settled down, the other eye may have progressed quite a bit!
Obviously, I can't see your eyes or know aout likely progression.
In your place, and if I hadn't had a graft that went disastrously wrong (a long story!!!) I'd go for the graft first.
But I think I'd be asking about what the scope was from halting/slowing the KC in the other eye, if possilbe, as the next step.
As regards post-graft vision -
SOme grafts work out better than others, and the hospital's definition of "success" may be quite different from the peroson's!
In general - the outcome of a good graft is to make a more regular eye surface that can be corrected more easily - with glasses (40%) or contact lenses (50%).
It can take 18 months or so for a graft to settle down and stop changing shape regularly.
WWhich could mean new specs/lenses every few weeks.... or fitters unwilling to fit them sooner, and get irate patients at the speed of needing new ones.
My graft turned out very very shortsighted and has been getting more stigmatic ever since -
- a few days post-graft, reading at 4" distance was very sharp, and it's been downhill ever since. Reading is getting harder and I tend to leave the lens out in my other eye and alternate as I find bits I can't make out with one.
Distance vision I have none- no letters on eye chart, and though I was fitted with a scleral lens 3 months post-graft, can only tolerate it for an hour or two before the world goes misty, and glasses aren't an option (because of the brain damage caused by the anaesthetic - I wouldn't be able to balance in glasses with that high an astigmatism correction)).
Reading, on paper at my desk, I could havwasn't a problem for me, and may not be for you- but then, I was used to reading lens-less at 2" distance, so 4 or 5" distance wasn't so new.
Id guess, if you can cope with short-distance paperwork, you'll be fine.
But then, maye your other eye will be fine.
THe amount of pain and hassle with grafts varies a lot - and so does light sensitivity, which may be an issue if a lot of your reading and writing is on the computer.
You may like to investigate special accessibility software that will change colour schemes, or read out the screen to you so you don't have to stare at it.
Again, you may have no porblems if the other eye copes fine. (Mine were pretty much the same - I was asked to choose which to graft first!)
I *think* it is more usual fror grafted eyes to come up short- rahter than long-sighted - but you can get readinging glasses in supermarkets for afiver or so, whic shouldn't break the bank.
HOpe this helps and hope it all goes ok for you.
Good luck with the PhD.
Rosemary

[Lizb]

Hallo magictime!
I think there are two issues here:
- if your "bad" eye is so steeply conical that it won't even register a reading on the Orbscan, then it probably is too advanced for intacs to help, and certainly too far advanced for CXL to be possible.
And quite likely to be difficult to fit with lenses.

on that note, dont discount either until you have had a corneal thickness reading done. an orbscan is different to corneal thickness.

For the first time in a long time, i have had a corneal thickness reading done and the consultant (private not nhs) was surprised at the thickness compared to the orbscan reading. I have quite thick cornea by all accounts.

Apparently i am unusually but i have thick corneas considering i have KC. it is worth looking into prior to excluding the options totally. I havent had useable vision in glasses in my left eye for a number of years and havent been able to get on with any contact lenses as yet due to dry eyes but i am still suitable for both CXL and intacs.

My hospital have been keen to get me on the transplant list for a couple of years as i havent got on with contact lenses but i have now got the cash to go private. what the consultant there has said has supported what i have researched on the internet so i dont think i am being ripped off.

[Andrew MacLean]

Hello Magictime.

Like the others Im sorry things have taken this turn. I was in my 50s when I had each of
my two grafts. My condition was still deteriorating.

Seriously; if the graft is now indicated we all wish you well. I know it's never an easy decision to make. When the time comes, the time has come!

All the best.

Andrew

[GarethB]

I'm unsure how similar your case is to MartinC, but he was told he would need a graft beacuse fo the state of his corneas and he too had problems with lenses.

Now he wears soft contact lenses for KC and gets perfect vision so the fact you had problems with lenses once you may be Ok with the new lens types available.

The NHS system can be slow but I know of several cases now where people went private to get lenses quickly that worked for them. They then went to their next scheduled appontment and the hospital had to accept there was an alternative that worked and have continued looking after them on the NHS and agreed to provide new lenses should their presscription change.

This may be another route to explore.

[MartinC]

I nearly posted earlier actually...........

Your case does sound very similar to mine though by the sounds of it your cornea is far steeper. That said, I was told that some of the hospital topography machines are not the best??!!

Like you, my right eye was far worse than my left and I was very much relying on the left eye. I was also told it was better to sort out the right now so that if the left deteriated then I would have a good eye still. For info, my right eye now with a K3 lens is better than my good left eye was with an RGP!! I haven't had useful vision with glasses for 20 years!

Have a search for my previous post about 3 or 4 months ago but what I would say is you MUST take some time and get a second opinion.

The main eye consultant at a major city hospital told me I had no alternative than to have a graft and yet here I am, just a few short months later, with better vision and comfort than I've had in many years!

Feel free to PM me if you want some more detail or even just a chat!

Martin.

[Lynn White]

Hi Magictime...

OK.. just to add a few points in here...

First of all, although grafting for a long time has been the ONLY option for KC when nothing else works.. this is no longer the case. if you look beyond the NHS, there are many options available.

For example, you could have Collagen Cross Linking (CXL) in the good eye which has a VERY high chance of stopping any further progression. However, that WOULD mean some fluctuating vision in the good eye for a fair few months.

As you seem to say no contact lenses have been tried in the bad eye, it would be sensible to find out how much vision you could get in that eye with a contact lens before you consider grafting. Another point is to find out whether you have extensive scarring - or not - in the bad eye. If you do, then grafting is probably a sensible way to go. If you do not, then some form of contact lens solution may be possible.

If you have a relatively good corneal thickness then possibly INTACS and CXL in the bad eye may pull it back. I know of many extremely advanced cases where these procedures have resulted in normal vision.

The thing is here is to realise that the major advances worldwide in KC treatment and management are now outside the UK NHS, so DO explore other options before simply following the route that has been laid out for you. You may well end up doing exactly what you are doing now... but at least you will KNOW you examined every option available.

Lynn