UK Keratoconus Self-Help and Support Association

Hi
I’m new to the site and to KC, I’m having both my eyes cross linked on Wednesday the doctor who is doing it says I don’t need them scraping just perforated as this does the same thing but without the pain and it wont make my cornea any thinner which scraping would do,
I’m unsure off this as all the info I have read on it seems to say scraping is better,
Has anyone had any experice off this or any info would be greatly appreciated

Hello Linzi,

I had crosslinking done on my eyes about 6 months ago and this was done with the epithelium (top layer of cells on cornea) being removed.

I am no expert but the general view seems to be that by not removing the epithelium the riboflavin drops do not absorb properly, thus making the treatment not as effective as it could be. Not removing the epithelium seems to be more popular in the USA.

I decided to have the epithelium removed as this was the original way the treatment was pioneered in Germany. Also, the few results we do have on crosslinking are from the epithelium being removed. Apart from there being less pain there is no conclusive evidence to suggest that not removing the epithelium will have better, similar or even worse results! So really it is your own decision as to which method you prefer. Talking from experience, having the epithelium removed is not as painfull as you might think, although your eyes will be sore for a few weeks after.

Also having the epithelium removed will not neceesarily make the cornea thinner as the epithelium regenerates itself and heals quite fast. A final point, I would strongly suggest that you only have one eye treated at a time. Wait till you have recovered from one, untill you do the other. I gave myself 2 months before I had the second eye treated.

Dont rely on this information alone, you need to speak to your consultant before making a decision. Hope this info helps.

Kaz

kaz

CXL is still a new therapy, so the optimum method may not yet be known.

My own take on your question is that if you trust your ophthalmologist enough to pay for this sort of therapy, then go with what he suggests; it may be that having seen your eyes and the particular stage of your keratoconus he has formed the view that the method he has suggested would produce the best results for you.

All the best.

Let us know how you get on.

Andrew

Thanks for your replies,
My doctor did say that I only have mild KC and his way of doing it was very similar to scrapping as he puts tiny holes in the cornea and makes sure the riboflavin drops do absorb properly so maybe he knows best, but I do have little more time to consider my options as I have had to reschedule my crosslinking for the 25th June because I have got a chest infection and a subconjunctival haemorrhage in my left eye.
I will let you know how it all goes

Linzi

why not get a second opinion~? if you are apying you have a choice- this is your eyesight after all?

This was my second opinion, my first doctor who i seen wouldn’t do crosslinking on me because he thought I didn’t have KC bad enough and I hadn’t tried contact lenses for long enough (I just could get on with them), he just said why would anyone put them selves at the front of a queue for a procedure nobody knows that much about.
But what he did say was that when he does do crosslinking scrapping is the way he does it as he believes it has better results.
So I think I will have them scrapped.

Linzi

Are you any further forward?

You are in our thoughts.

Andrew

Yes I phoned the eye hospital yesterday and said I would prefer them scrapped as I believe that has the better results they said its not a problem so they have given me two dates I’m having my first eye done on the 25th June which is my worst eye, and then the second eye done on the 9th July, I’m not to sure if that’s to close together I remember Kaz saying she waited two month to have her second eye done.

Linzi

Linzi

I am sure that we all wish you well! Please do let us know how things go for you; it will be good to learn of your experience of the procedure and life after CXL.

Andrew

Thank you,
I will keep you updated with how it goes
Linzi