UK Keratoconus Self-Help and Support Association

Hi Everyone,

I've just had a recent check up at Bristol Eye Hospital, and been advised to consider Cross Linking. This doesn't appear to be widely available on the NHS, certainly not in the Bristol area, and I am looking at private options. Having spoken to a couple of private providers in London, I am left raising a couple of questions in understanding what I need, which is:

Does modern cross linking treatment NOT require the Epithelium to be removed? One hospital advised that they do not remove the epithelium as it has proven to possibly damage the cornea, and that there is something they mix with the riboflavin to help absorb the drops whilst another hospital have said they wouldn't decide on this without seeing the condition of my cornea at the moment. Is this reccomended or not? Do we know of any research to suggest one way or the other? I don't want to risk damaging my cornea anymore!

If Cross linking speeds up the "aging process" of your cornea, what do we know about "older" corneas in terms of long term effects of cross linking? I appreciate this is a relatively new procedure, with not a great deal of history, there aren't a lot of arguements over not having cross linking, most feedback has been positive, which is a help in deciding,

I haven't found many risks listed, I know if I leave it, my condition could get worse, so I have nothing to loose really, but thought I would ask peoples opinions on risks and how those who have had cross linking have found it?

Thanks

Claire

Hi there Claire

Very sorry that I can't offer any of my usual waffle on what you're asking about -- Crosslinking. I've not had cause to give it any serious consideration as it was alas in my case too late in the day for it to be of any real benefit for me. Unfortunately the curse of the summer holidays means that we don't get our normal traffic on the Forum but hopefully someone with real-world experience will be able to offer some advice.

Best wishes

Chris

Thanks Chris, I appreciate your response, I am due a tel conversation with my consultant next week, I just wanted to see if there with others in a similar predicament!

Thanks again

Claire

Hi Claire

I had epi-on crosslinking performed in one of my eyes just over a year ago by David O'Brart at Westminster Bridge Consulting Rooms, St Thomas', and at a recent follow up was advised that the eye appeared to be stable and to have recovered well from the treatment. I found it very painful and uncomfortable for the first few days, the first 48 hours especially, but was back at work within a week or two (on reduced hours initially).

I think you would be lucky to find cross-linking available on the NHS at present; my only option appeared to be to have it done privately.

From what I have read online and on this forum, opinion among specialists still seems to vary on whether the epithelium has to be totally removed or not...

However I was advised that "recent formulations of riboflavin eye-drops now allow the procedure to be successfully performed without the need for complete epithelial removal only superficial scratches"...and that "Mr. O'Brart has been directly involved in both laboratory and clinical studies evaluating these new formulations and has found them to allow adequate Riboflavin absorption into the cornea resulting in effective cross-linking and fast post-operative recovery."

I was also told that there are always risks with any treatment, but that there have been very few complications reported as a result of crosslinking to date...however there are never any guarantees. I think if you search this forum, you may find one or two people who have reported worse vision after cross linking than before, but this seems rare, and thankfully did not happen to me.

As to long term effects of aging the cornea, I have not really found any info one way or the other i'm afraid, but obviously elected to go ahead with the treatment anyway, as I was approaching the stage of not many other options if I left it much longer!

I think all you can do is to try speaking to a couple of other specialists, even if only on the phone to find out their views?...I found Mr O'Brart's office extremely helpful and informative, but I am sure that others would be equally so.

I don't know if this is any help to you or not? Good luck with whatever you decide.

All the best

Ian

there is a four year study on cross linking conducted by FDA,, and the study is available to download from the FDA site

http://www.clinicaltrials.gov/ct2/show/ ... ing&rank=3

Hi All

Thanks for the responeses - especially yours Ian.

I made the decision to go through with the treatment. I have my appointment for cross linking all booked for Moorfields (private bit) on Tuesday this week.... eeeekkkk. I did finally get to the bottom of the cross linking, epi on or epi off dilema, at Moorfields they do a partial removal, they make tiny holes in your epithilium and it maximises absorption without removing the whole thing.

With all the upheaval I have decided to write a blog about my KC experiences. You can find it here (it's working progress - but would like to share and learn from others) http://harringtonbear.wordpress.com/

So fingers crossed for Tuesday...

Thanks

Claire