11 years and still KC in only one eye?

[Andrew MacLean]

For many of us the idea of CXL is purely academic. They won't offer the procedure to people whose corneas are already too thin, partly because of the danger of UV light damaging the retina.

Add to that the way in which they remove the epithelium (on this side of the atlantic) and the hazard of 'dry eye', and CXL begins to look less attractive.

Andrew

[rosemary johnson]

Hi again.
CXL isn't intended to thin the cornea - it's aim is to stiffen it by enhancing the performance of the collagen in the structure - making it link across the structure to the collagen next door, hence cross-linking, to make the structure stiffer.
What thins the cornea is the laser treatment intended to correct short sightedness - ordinary shot sightedness is because the back of the eye is too long, so the laser bods try to correct this by shortening the front by laserng off some of the cornea. If your cornea is already thin or weak, this is not a good idea!
As for me - you may have heard f one of the aims of CXL being to stiffen the cornea so as to prevent it getting thin enough to have something called a hydrops.
By the time it gets to the stage of having a hyderops, it has already got to a critical stage of thinness.
Having had hydrops in each eye many many years before CXL was first invented, and having deteriorated quite a bit since then, my corneas would be far too thin to have CXL.
You can only do CXL if your corneas have a certain minimum thickness (normally 400 microns, but some practitioners vary this) before it starts.
At least, that is the case in EUrope - I thnk the procedure called "CXL" ma be done slightly differently in the USA than in Europe.
I'm sure mine have been far too thin for manyyears now!
In fact, the eye that is still mine has had 3 hydrops already.
As I say, no-one except this researcher has ever tried to do a topography on me, so I don't know quite how my KC is advancing. My subjective impression is that it's been getting slowly worse, but no proof of that. Maybe my brain is getting less energetic at unscrambling the distorted images, as I'm still wearing the first ever RGP scleral I ever got for the eye that's still mine.
Intacs also is a therapy for mild-to-moderate KC and I left that stage behind long before it was available.
The other eye had a graft just over a year ago, which went disastrously worng, but that's a long story. It and the one I hav eleft were very much of a muchness, and I was actualy offered two grafts and asked to chose which to do first. THe other one now won't ever be possible as the first op left me far too hypersensitive to the drugs used to tolerate any further eye surgery, including cataracts, which is normally very straightforward.
Rosemary

[keratocop]

thanks andrew, i really hope my cornea isnt too thin, though i have had prk done already, which i should have waited for the cross-linking to come out before i did it but who knew.
wow rosemary, your case is depressing. Is there anything positive going on with you. It seems like you got the shit end of the stick all around. Im not too familiar with grafts...does that mean cornea transplants? I hope that my vision doesnt get to that extent. I would like to believe that there is a slim percentage that have it as bad as you do.

[Andrew MacLean]

Only a minority of patients will ever progress to the point where they need surgery of any sort; of that minority a small minority will develop any complications.

After a graft (transplant) it can take up to two years for the eye to settle. For the overwhelming majority people who have a transplant the long term outcome will be good vision (corrected or uncorrected). It is a hope that we all share that when she emerges from her present travails, Rosemary will have a good outcome.

Some who have transplant surgery will develop complications that arise from the treatments we need after the operation. These complications can vary; in some cases a cataract will develop, in others there may be increased IOP (Glaucoma). Fortunately they do keep an active eye on things so that if there are any such developments they can treat them right away.

Andrew

[keratocop]

hey andrew,
I think i was a little too depressing on my last post. I will hope and pray for rosemary that everything goes good in the near future with her grafts.

[rosemary johnson]

A graft is a transplant, yes.
What happened to me is, I gather, very rare.
About the only thing going well in my life at the moment is that I have a friend's two miniature Shetland ponies working well for me. GOing round me in circles in an arena on the end of a long rein. The net thing will be to learn how to harness them up to a cart and drive them around.
Maybe some time I can gt to try my hand at a scurry driving competition! - this is the equivalent of a ski slalom race for ponies and carts. You ahve to drive the pony/ies and cart round a complicated twisting course and between pairs of traffic cones, and for each cone you know over, they add extra seconds to your time. The winner is the one with the fastest total time (actual time taken plus penalty seconds). With those two little monkeys, and with my inability to judge distances properly, I can see this turning into more of a demolition Derby with cones flying in all directions!
Rosemary