UK Keratoconus Self-Help and Support Association

Hi,

I’m considering the CXL/C3R procedure on one of my eyes but the thing that’s holding me back is scraping off the epithelium from my eye. Some recent studies have suggested that you can leave the epithelium on and get similar results. I might wait a year or two until the results are known.

Dr. Rubinfeld has organized the CXLUSA study, involving 10 US sites (locations listed at CXLUSA.com). The goal of this prospective, multicenter study is to compare the results of epithelium-on versus epithelium-off CXL in patients with different levels of keratoconus, pellucid marginal degeneration, forme fruste keratoconus, and post-LASIK ectasia.

http://www.cxlusa.com/Libraries/CXL_Doc ... .sflb.ashx

Thanks,

Ian

Huge thanks Ian

A fascinating read on a variety of fronts.

Firstly, that the professionals are seemingly discovering they aren’t quite as sure as they thought they were on the exact process going on at the cellular level in Crosslinking (quiet a bit of “we thought it was this but now we think it might be that” in the paper). While the research is still ongoing and so subject to change, it was a little bit of dynamite to read that maybe there wasn’t much, if any, actual crosslinking going on !! (yep, that possibility entirely justifies the use of double explanation marks from me I think) (quote from pg. 42: … “It may be that CXL just shrinks collagen but does not interlink the collagen fibres…”)

Secondly, that all said, the really good news seems to be that the more investigation gets done, the more certainty emerges that Corsslinking almost invariably halts progression and often improves vision. This reduces still further any claims as to the procedure’s “experimentality” (my spell checker says that isn’t a word, but I’m sticking to it). The only question is the how, not the result. The emerging efficacy rates are way, way into the quartile where an insurer would have a hard time justifying that it wasn’t proven in terms of typical outcomes. That said, I think as the paper touched upon, more clarity is needed when it comes to eligibility criteria (some were mentioned that I’d seem before like the 58D Kmax).

It really is worth reading the whole thing if you’ve got the time.

The paper does go off-topic and covers all sorts of other interesting ground too – eye rubbing even gets a mention in there.

While searching around online for related material on another point raised in the paper, I did find though a definite big-endian little-endian divergence about the “epi-on / epi-off” question. Some clinicians are seemingly downright hostile to it (e.g. see http://www.keratoconus.com/10.html -- I just love the big red capitals mid way down the page… do you think by any chance they might have some doubts about it ??)

As you rightly say Ian, I think if you’re not facing a critical situation, wouldn’t hurt to wait a year or so and see where the consensus goes on that one. But then, another school of thought says that when it comes to Crosslinking and actively progressing Keratoconus, the sooner the better…

Of course, it just adds to the long list of questions that we have to consider. I sympathise with anyone trying to grapple with all this information and uncertainty while attempting to make some decisions (I know, I’m there too).

Best wishes to all

Chris

Hi itansey

I had cross linking just over a week ago, done to my left eye. Honestly mate, you dont feel the epithelium being scraped off. The eye is numbed with drops, so you feel nothing, and at the same time, your visions really distorted and the light from some other drops so you cant really see it. I mean, your aware of it, but you genuinely cant feel it. If you are given a valium beforehand, as I was, it really isnt a problem.

It was my biggest fear too going in, but now im keen to have my right eye done- as it wasnt a problem at all!

As for having it done, im only on my 9th day post treatment- and havent had any problems whatsoever. On the day it was done, I had severe pain in my eye and couldnt open it due to intense light sensitivity- but then they did provide drops to counter the pain, my mrs just misread the sheet (oh how i suffered). But when I woke up the next morning, the pain had gone, and i could open my eyes fine.

My visions been cloudy all week in the left eye, and fluctuating, but whilst its too early to tell if will regress it slightly, ive already noticed that while things on one hand are still blurrier than before as the eye is recovering- i can see certain things more clearly through the left eye than i could before. Which is odd. Before I couldnt read text on the google front page with my left eye, it looked all smeared. But now, I can, even though everything else looks smeared.

You do have an absoloute ton of eye drops to take, but they do every thing and after a few days you get used to it.

Basically, if you want to have it done- its worthwile. And dont worry about the epi, you genuinely dont feel nothing.

Liam