UK Keratoconus Self-Help and Support Association

Hello Jay here
So i have been reading into Cross Linking Surgery. Sounds great to me but then again costing £4.5k it would do, well it has to so they make me want to have it. But im unsure, if it does what it says it will do then im for it i would have it now. But then again if it doesnt do what it says, im stuck.

For those of you who don't know wha Cross Linking is its a new technique which has been developed by Professor Inestine of London. I will say it simple because thats the only i way i know it, he uses a special Vitamin B eye drop on your eye and uses a special UV Light machine to send these drops through your eye via vibrations. After a few doses of this you are apparently corrected and have little less than a mild stigmatism at the most.

But its new only been being done since June 05 so im a bit iffy, Risk wise the Health Organisation can't see why there would be any long term affects considering how the treatment works. Because they arent takening anything away from your eye. Any thoughts?

Jay

Is that Professor Dan Z Reinstein, of the London Vision Clinic? I was going to ask my ophthalmologist for his take on this development when I see him in March.

One of the problems in the commercial market place is that fishmongers never put out signs saying "rotten fish for sale".

Still, if this is an advance, it can only be welcome!

Andrew

ps for an early abstract click on this link.

I think that the main concern with C3R is that we are always being told that UV light is dangerous to the eye. This procedure blasts lots of UV at the eye.

The concern is the long term effects of this.

But I certainly agree that it does sound like a useful procedure, especially I would have thought for people with mild KC.

JaiBoi

The inventer and pioneer of this treatment is based in Dresden, Germany, Thats where I had mine done and thats the only place Ic recommend to have it done. The reason why I say this is because there research and experience is comprehensive over the past 6 years and in all cases of the treatment the KC has been halted.

The cost in the UK for this treatment, in my opinion, is NOT justified. You can get flights, accomdations etc for a total of £1500 and have both eyes done by the creators and pioneers of this!

Also bear in mind, that in the UK they do NOT remove the epithelia for the uptake of the mixture...this is a good thing, and bad. Depending on your diligence.

The following should give you more info

My Experience
http://www.keratoconus-group.org.uk/for ... .php?t=731

JMR's experience
http://www.keratoconus-group.org.uk/for ... .php?t=902

http://www.keratoconus-group.org.uk/for ... .php?t=902

Hope that helps

J

you are both right, im asking about this when i have my next appointment at the hospital. Which is in the next few weeks. My vision is good at this moment in time so the feeling is by the Vision Clinic is that it might be more successfull as my eyes are not that bad. I did spell his name wrong LOL. As far as effects are concerned i can't say i care that much, we know we arent suppost to sit in the sun all day, but we do it on the beach. But i have thought about long term effects and all i can say i think is i would deal with them IF and WHEN they arise. The professor is giving me a telephone call in the next few days so i will tell you all how that goes and maybe he can tell me more about it.

Jayboi

I WOULD care about the effect of the UV light....as they should not to be ignored. However, as highlighted in my posts previously, I think the effect on the eyes and the amount of UV, its basically the equivalent of spending a few weeks in Australia on the beach without glasses!

However, there is also another issue thats being discussed around C3R and thats the effects on Keratocyte cells...however there isnt much longer term evidence as of yet.

I would treat this treatment option with diligence and not get to influenced by Private Eye Clinics who are over selling the solution especially as there arent many examples of this being carried out in the UK...also there is a sinister (in my opinion) reason why the FDA have not yet passed this!...bit political which I wont get into here...but bear that in mind...........

J

Keratocyte cells..


please tell me more, i need to be sure before i look at having this.

And can you contact me with how i can contact the clinic you went to. That would be great as well.

Jayboi

I was seen under Prof Kholhaas who, in my opinion, is an authority on C3R in the world.

Here is there website and info on KC and there thoughts on it in relation to KC

http://augen.uniklinikum-dresden.de/seite.asp?ID=154

Keratocyte cells form a part of various layers of the cornea and are instrumental in the corneal health...extremely fundamental.

J

For clarification, the FDA is an American legislative body, so any tretment in the UK will never have FDA approval. UK drug manufacturers and producers of medical devices that are sold in the US must get FDA approval before they can be used.

The UK governing body was the MCA which is now the MHRA. If I was at work today, I would be able to say what they stood for. The European equivelent is EU Phar. I think.

However I am deep in discussion with Dresden regarding C3R as before Christmas I was told by the hospital they think all avenus of helping my right eye have been exhausted.

I can't see [forgive the pun] how UV light and vitamin B will stop the cornea from changing shape. I feel deeply sceptical of some private treatments which have no long term follow-up, indeed I would be asking for clinical trial data.