UK Keratoconus Self-Help and Support Association

Hi there everyone,

I had C3R in my bad eye a month ago and am now very concerned about the other starting, which it realistically will. I asked the Eye Doctor about having the C3R in the eye that currently seems OK, as a preventative measure. He wasn't keen to advise as there doesn't seem to be any research on this. Does anyone know if this could prevent it starting in a good eye, or have contact details of someone in Dresden, where more work in this area has been done?

Cheers
Louise

From my contact with Dresden, I asked about this treatment in my grafted eye where KC has come back in the ungrafted part of the cornea.

His concern was that in addition to the KC affected cornea of mine would thicken and so would the graft which was already a very good thickness for a 20 year old graft. The view was that the graft would thicken abnormally and give more problems than it cured.

Hope this helps.

Gareth

I am reminded of an old aphorism: if it isn't broken, don't fix it.

Andrew

Hi Gareth and Andrew,

That's interesting. Thanks for the info. I just thought that it would be unlikely to make it worse and if it was hardened then the KC couldn't start. My main priority is to maintain the good vision in 1 eye, then I can get away without correction, as soon as the other eye goes, I'm scuppered. Hmmmm. decisions, deciosions.
I have sent an email to this address gwollens@hotmail.com, in Dresden asking if they have any advice.

Hi Louise,

The concern I was told about a thickening cornea could cause several things;

1) It could go flatter as the cornea would have an abnormally thick layer of collegen.

2) You could end up witha very rigid thick cone that would need correction.

3) The collegen layer is a specific thickness and the collegen regularly alligned which makes the cornea clear. Too thick, this could become irregular and make the cornea opaque.

There is no evidence to suggest this, just theory and they were unwilling to take the risk. They would much rather test this on animal tissue first to see what might happen.

Definitly a case as Andrew put it, if it aint broke don't fix it.

No one can guarentee you will get KC in the other eye. Plus KC can stabalise too like mine has for over two years now.

Are you not taking about crosslinking your transplanted cornea and the concern with that, and the advice given? Which is not the question?!

Actually from the question asked, the earlier the better is what was seen from the first ever studies on this.

Although the answers I was given were not directly to Louises question I do think they are related.

My grafted cornea is as thick as a normal cornea that does not have KC so some direct comaprisons can be made in that respect.

Where I have KC in my right eye is in the ungrafted part of the cornea which thus pulls the graft out of shape.

A transplanted cornea, which you should have added in your first post has not got any studies to back it up for crosslinking. So no comparison can be made, nor the non-epithelium removal type, it has not even been tested on animals. Its said to be dangerous with out it being done how it was developed and tested using pig eyes. There is actually currently four types of crosslinking being done.

Louise

To answer this questions directly. If you do not have KC in the eye, I wouldnt have C3R performed. The potential risk and the unknown on performing this procedure on eyes without KC just seems not worth it to me

When/if you get clinically diagnosed with KC, I would consider it.....other than that....try and steer away......thats how Id approach it......

HTH

J
Just to add, and I know majority reading know this, but grafted and transplanted are interchangeable terms when used in the above context.

Thanks guys for your advice and comments. I had almost decided to have the treatment in the good eye, so I'm glad I asked. I won't now, unless I hear of evidence to suggest it can prevent KC starting.
The surgery where I had my bad eye treated, stated there was no research done on treating non KC eyes, but the main point of concern seemed to be, that they would be charging me for the treatment, but they wouldn't know if KC hadn't started because it wouldn't have anyway, or if the treatment had prevented it.
At the time, my view was I didn't care why it hadn't started, just that it won't.
Instead I think I will have the good eye monitored as regulalry as possible and have it done when it starts. I know progression is different in everyone, but can anyone recommend a monitoring interval? Again, the practice I visit recommended 6 months, but that seems a huge time.

Gareth, do you have a contact in Dresden that I could run this by?