UK Keratoconus Self-Help and Support Association

Current research is looking into the long term affects of CXL 5-30 months after.

Some startling discoveries uncovered.

What's your comments.

Hmmmm

Sounds very subjective and not easy to read into......!

Don't know what to make of it other than see what happens in a year or so's time when my cxl has been done for 18 months or so.....

there are alot of treads on this issue, fact of the matter there is a lot of hype around CXL, we only hear the succulency cases

I agree. Its gonna be a while before we see long term studies. At the moment it seems favourable towards CXL with a lot of successful cases. But 10-20 yrs down the line, is a another thing.

Has the FDA approved this treatment yet?

Are you talking about America?

Not sure about over the pond, but NICE in the UK have.

With the usual massive caveats of being a complete layman. However, I'll offer up my humble opinion on this specific paper anyway.

Firstly in the cases where CXL is recommended (i.e. progression in the last 6 months) then not having it done isn't a zero risk option. Also CXL does have a significant history to back it up. That's a more general context for this to sit in.

Reviewing the conclusions:

Conclusions: CXL in human keratoconus can cause considerable morphologic corneal changes up to 30 months postoperatively[1]. Especially noteworthy is a long-lasting, maybe permanent[2], keratocyte loss in the anterior and middle corneal stroma involving the central and peripheral cornea. As long-term corneal damage after CXL is of genuine concern, particular care should be taken to perform this procedure only in accordance with investigational protocols.

[1] That's the point of doing it surely? Also only one cornea was 30 months post treatment.
[2] "long-lasting, maybe permanent" that's a very considerable leap to jump to based on 6 corneas. So possibly only 3 patients one of whom was treated 5 months ago (so probably won't be stable yet) and the maximum was only 30 months.

It doesn't (in the abstract I can see anyway) detail what type/protocol of CXL was undertaken either.

The problem with a lot of research and statistics is that it can be slanted to say whatever the researchers want it to say. My understanding of CXL is that it delays grafting and that's always a good thing, the NHS is reluctant to do it more because of the numbers/cost

there was this youtube video from an irish practice where they stated they have performed grafts on CXL corneals

Lou, I am not sure that you can explain away the caution in NHS clinics about CXL. The same caution is found in the United States.

But this research is just one element in a growing body of material. In time there will be a definitive answer but for now people have to exercise their judgement when offered CXL, either privately or on the NHS.