Cross Linking

[street_spirit]

Well instead of starting a new thread I'd thought I'd just post in my old one.

It's been three months (I think) since I had my cross linking. I think it's gone well, I don't really even think about it anymore. Other then at some point I might need it in my right eye and hoping it will be on the NHS by that time!

I had a check up a couple of days ago and apparently I have in fact seen improvement in the eye that had the treatment! Which is quite rare as it's meant to halt, but some people do see improvement. I can now read the bottom line on the 20/20 board with just my 'bad eye' which I couldn't before. The Doc checked the eye and seemed to think everything was ok. So will see what it's like a year after he first saw me, which will be January.

Any progress with getting this stuff on the NHS!? it seems mad to me it's not!

[Lynn White]

If you read the posts on the NICE consultations you will see where we are with getting this on the NHS. Consultations are ended now (28th of July) and the report with be out in November. Chances are though, it will still be a very limited procedure. That why I was asking people to contribute to the consultation because unless you, the KCers, push for it, progress on getting this mainstream will be very slow. This is due to lack of research information on long term effects and short term efficacy. Unfortunately, anecdotal good results don't count!

Anyway.. great to hear you are doing so well!

Lynn

[street_spirit]

I see, sorry I did not see that else I would have submitted something. Not sure how it can still be called a new treatment it's been around a long time now, but hey ho.

[Lynn White]

I think you could call it more of an evolving treatment....

I have seen cases where it has not been applied either properly or appropriately - which has led to "not so good " results. This is more often outside the UK, where there are less stringent controls. Although it can be totally frustrating that the UK appears to be going at a slow pace.. there ARE goods reasons for this.

If you look at a simple experiment often conducted in schools to demonstrate statistical probability, you will see what I mean. If you flip a coin enough times, you will record there is exactly a 50-50 chance it comes down heads or tails. However, if you only did this around 4 times, you might just get a run of 4 heads in a row and could conclude that this is what normally happens. Its only when you have a large amount of data that anomalies are ironed out.

I have done R&D with contact lenses for many years and there often is a temptation to think something is either working or not working when you get a run of consistent results. You really do have to grit your teeth and do lots more tests before you can say, yes this really DOES work (or not!). And when you are dealing with emotionally charged situations, there can be an awful of lot of "willing" something to work.

Yes, it looks like CXL is working well. What people are looking at now is - can it be made to work more effectively, with less UV exposure or different types of UV exposure etc. My own caveat is that as CXL effectively ages the cornea - what happens when that cornea ages on top of that? It may be nothing happens.. or maybe something DOES happen.

And then we have stem cell research taking off.... its all very interesting

Lynn