UK Keratoconus Self-Help and Support Association

Hello,

Does anyone remember a posting a month or so ago questioning C3R?
I remember reading the post by someone who was considering C3R but had been put off by an article advising against the use of C3R due to the UV damaging the Retina. The posting included a link to this article which
I'm trying to relocate.

Gareth, I seem to remember you might have commented on this subject . Any ideas?

Thanks
Louise

Louise,

Without searching the forum for C3R I am not sure.

Will try and see what I can find.

Hello Louise,

Well this is not a reply for your question but I'd like to say that the standard C3R procedure has been shown to be completely safe. However there is some concerns about undergoing the operation not removing the epithelium... but even this modification hasn't been proved to be unsafe.

The only possible inner eye damage can occurs when the cornea is too thin, please read this article:

Experience with corneal collagen cross-linking finds new indication, safety criteria

Please take notice that even if the cornea is less than 400 there are some techniques that can make the cornea thick enough during the operation.

Best regards,

Hi,

Thanks for your emails.

I managed to find the link. It was : http://www.keratoconus.com/c3rtx.html

The surgeon who did C3R for me was interested/surprised in the advice given by this doctor, when I mentioned it. He said C3R is a good treatment, as long as the depth is not less than 400 and as you mention, BlackA, he said distilled water can be used to thicken the cornea during the op, if it's found to be less than 400.

Louise

I can understand more caution in the US because fo the way litigation works over there, so unless the procedure is done by a research centre which will have to meet certain FDA guidlines, other centres would wait for the results.

Europe is slightly different, as the pioneering work was done in Germany, then as long as the Doctor performing the procedure can prove they are suitably trained they can do it. Then there is the NHS issue where I think NICE has to pass it as beneficial and cost effective before we get it as a routince option.

It is good to see a caution regarding UV light. As we know in cancer treatment the correct amount of radiation in radio therapy is beneficial. Get it wrong and you can be permanently damaged. This is usually down to human error or faulty equipment. The same is also possible with C3R regarding the use of the UV light. I know manufacturers of medical equipment try and engineer out the posibility of the wrong dose being deliverd, it may be easier for C3R and already have been done.

I completely disagree with so many points in that article.

clinical evidence that it actually stops progression and reverses the disease is questionable at best

There have been extensive and clear research about it. And in my personal experience has been a success.

There is also currently lack of standardization as to how the treatment should be performed

This is true but recently this year the IROC institute developed a standard machine so It will go mainstream soon.

My major concern is that if not correctly performed this procedure could result in long term damage

This is definitely true but applies to every surgery.

Long term longitudinal studies are required

Absolutely, but a few thousands of operations has been made for the last 7 years so it is not so new...

I do not know whether the article in question had been sugject to the academic requirements for peer review before puclication. One problem with the www is that there is a great deal of "information" out there that is of very little merit.

You can usually tell if an article has been through peer review because it will be published by a reputable academic journal. Otherwise, take the information with a healthy pinch of salt.

As a rule I tend to disbelieve unsubstantiated claims that are made in support of one kind of treatment or an other by people who are trying to sell me the treatment.

Andrew

Hi,

I disagree with the advice against CR3 as well. There is more and more research coming out in support of C3R and as long as the thickness is greater than 400 microns very little light actually resches the retina. Both myself and the surgeon, who undertook C3R for me, agreed that when comparing the risks and likely outcomes of progressing KC and the risks of C3R, C3R was undoubtedley a winner.

Louise

Hi, what is C3R?
How do you get it?
What does it do?
Thankyou

Corneal Collagen Crosslinking.

They drop Riboflavin into the eye and "fix" it into the structure of the cornea with UV light. The idea is that this can rebuild or stabilize the cornea.

Andrew