Finally heard those words

[GrandPaClanger]

Well after no decisions being made at the local hospital I made a private appointment with the top man in the area. He says that the treatments that have been proposed (creams alcohol delamination and intacts) are not going to solve the problem. So he is putting me on the waiting list for a graft (full thickness). Date to be confirmed by the local NHS hospital but he thinks it will be April May time. In the meantime he suggested I try a scleral lens if it works great if not we go ahead with the big G.

Actually a relief to hear the words just need to get my head round the fact that there is another person involved all though they do not know it yet .
Ian

[Andrew MacLean]

Ian

I know how it feels to have good news packaged this way. I am sorry that you needed to get to an NHS surgical list by going to a consultant privately. I did not think that this was the way the system was supposed to work.

Still, progress is being made. All the best with your scleral. I really liked mine.

Andrew

[Anne Klepacz]

So glad you've got something definite at last, Ian. And sclerals may well do the trick, as they don't actually touch the cornea. I hope it doesn't take too long to get them through. And if, for any reason, they don't work for you, the decision about the big G will be a lot easier to make!
All the best
Anne

[GrandPaClanger]

After talking with GrandMaClanger this morning seems I misheard him . He suggested the Scleral for the left eye (not the one being grafted). As wear time is OK with that eye there is not much point at the mo

He also mentioned that its possible to fit a lens on the graft in a few months ? that took me by surprise ?

Ian

[Anne Klepacz]

I know Moorfields have been fitting some people with a scleral lens a few months after a graft - again, I assume the reason that works is that the scleral doesn't touch the cornea. I don't think any other type of lens would be a possibility but things are changing so much with options for KC that I could be wrong.
Anne
PS Your 'mishearing' just goes to show how useful it is to have someone else there for vital consultations - it's so hard to take everything in when your mind is racing!

[GrandPaClanger]

Thanks Andrew for your kind words. Agreed about having to go private. Hopefully TinyClanger will still get his Xmas present . I am sure the Soup Dragon will help me out . Actually it was not as expensive as I was expecting and to get a decision made was as they "priceless"

Ian

[rosemary johnson]

I was fitted for a new scleral lens in my grafted eye 3 months to the day after the graft.
I gather there are people who've had them even sooner.
The main problem with fitting lenses soon after a graft is not that it is not possile or practical to do so - it's that the eye is still changing shape for a good long time after a graft, and you're trying to hit a moving target.
In other words, you get fitted for the lens, the lens gets ordered, by the time you go and get it, the eye has changed shape again and you need a new one already.
In some cases this might make it unwearable, in others at least the power is wrong.
As it happens, my 3-months post graft lens still fits fine (well, it did last appointmnet) despite having had the stitch break and the eye go all bulgey with the broken stitch, and very sore, and having them all taken out... the vision changed quite noticeably, but the lens seem to have the same effect
But the early changes did mean that by the time I went to collect it, it was quite overpowered - I'm quite surreally long-sighted and the first thing I had to do was pop out to Asda and get some 2.50 quid reading glasses. Trying to get a sandwich in the hospital cafe on the way home form that appointment was, errrm, interesting.
Slceral lenses are a better bet than corneal ones for early fitting, because, as the eye changes shape, the scleral continues to arch over well clear of the cornea and only the liquid reservoir between eye and lens changes shape.
SO the same lens will fit for a lot longer and can be worn without risk to the new cornea.
Though the power on it may go out of date, as happened to me.
Apart from the surreal look of the world, that lens wasn't too successful - in a very short space of time the world started to go white and misty after I'd only had it in for a short time - when the whole world was going white like a hydrops after an hour's wear, I went to A&E and they found I'd developed glaucoma (as yet another bad reaction to the eye drops; not uncommon). THat's now sorted out, but on the rare occasions I've tried the lens since, the owrld starts going misty pretty quickly and I start seeing rainbow haloes round any light source.
There's been some talk about, maybe this would settle down as the graft settled and got more established - so something that ight not happen if lens fitting is delayed. In my case, it hasn't. Apparently, this is a known risk of grafts - that's you'll end up unable to wear lenses without this happening - but not a risk anyone told me about till it happened, grr!
Other people have had sclerals from very early days and got on fine with them.
Rosemary

[GrandPaClanger]

Been given a date of the 3rd of May. Gulp

[Andrew MacLean]

In a way it's a shame your dare is so far away. All the beat, anyway.

Andrew