UK Keratoconus Self-Help and Support Association

Hello everyone, iam a new member to ths group, bilateral KC for 16 years, after struggling with all types of lenses now using sclerals which was great for a while. Now vison is getting worse again.

Iam considering the transepithelial ( epi on) cross linking with Dr boxer. It s a lot of money though. Before I make such a big financial move I wanted to see if any one has actually had this procedure and made any difference to them, ie haulted progress or showed any improvemnt in aided vison and or better lens fitting etc....

Your reply is highly appreciated , thanks

Moe

Hi Moe

"epi on" is less common than "epi off" so I'm not sure anyone's actually had that version of the procedure done who posts here. I may well be wrong ! If so, hopefully someone will be along soon with their experiences.

Best wishes

Chris

Hi Mo,

Sorry I haven't had this done though I would like to, I suppose from what I've read there is less evidence but it is less risky and beneficial. I do love his website, well at least one of them (http://www.keratoconusinserts.com/about.htm.

One of Dr. Brian's special qualities is that although he sees patients from all "walks of life" (famous and non-famous), Dr. Brian is described as one of the most "down to earth" doctors people have met. Everyone receives the same high quality of care regardless if you are a famous celebrity or a manual laborer in the field.

Anyways (as a complete layman) it's my understanding that so long as the Riboflavin gets to where it needs to crosslinking happens as expected. There are a number of methods to do this without "removing" the epithelium in the traditional way.

1) Perforating the Epi rather than removing (some of the epi left).
2) Creating a pocket using a laser (going "around" the epi).
3) Use of a different solution (to allow absorption through the epi).

He does #3 I think which has similar absorption and so CXL result. Some more info here (http://www.healio.com/ophthalmology/cornea-external-disease/news/print/ocular-surgery-news-europe-edition/%7B31f2a5c6-ff05-450b-bad5-f42130a839c8%7D/new-developments-continue-to-drive-use-of-corneal-collagen-cross-linking and http://informahealthcare.com/doi/abs/10.3109/02713683.2011.637656).

Best wishes,
Andrew

Options 1 and 2 are generally considered epithelium off, in the case of option 1 this is because part of it is removed which can be a non-uniform way and in option 2 although a pcoket is created, the epithelium is removed from the stroma so the rhiboflavin can be introduced to the pocket.

Neither of these are apporved by the FDA, so Dr Boxer has no choice in doing this with the epithelium in place. From the people I have been in touch with on the NKCF forum (US equivelant of the KC group in some ways), it appears that he has a habit of doing other things along side the crosslinking so it is hard from his own studies to determine if it was the cross linking, something else or the combination of the two procedures that has resulted in a halting of the progression.