UK Keratoconus Self-Help and Support Association

Well ive been thinking now for a long time since i heard about C3R, and i have decided im having it.

If my KC can be haulted in its step then thats a great thing, and if the cornea reduces and my sight gets better as well than thats a bonus.

I have been thinking about possible long term side effects, but after a long time thinking i can't really think of any. Its like what the professor said to me on the phone, the Ultra Light is the same as 2 weeks in Australia without sun glasses, and i have done that before. I can't see what real damage the light will do, and if the eye drops are what they say they are then thats a bonus as well.

I also thought i always say to people "Live for today, not tomorrow." So i thought i best eat some of my own words.

**JayUK**
I did try and get hold of that clinic in Germany, but i didnt find them very helpful in their responses if any. So what i have decided is i will try again, but what worrys me is how to get there from an airport. Any advice?

I hope you have spoken to a knowledgeable person in the UK, assuming you are having it in the UK.....

BUT, please bear some things in mind

a) You may more than likely still need contact lenses after this treatment........If you have issues now around contact lenses and fittings; what are you going to do thereafter?....I am trying to point out that you have another underlying issue here which has nothing to do with the actually KC....its more around patient care and getting someone to fit your lenses...

b) Please be aware that the cornea changes over sometime...6 months in my case

I would try and progress again with Dresden.....and even call them....in terms of getting there etc.....I took my wife along with me.....however the Hospital is not that far from the airport..abut 15 mins

Hope that helps

J

J-B

That's a bold step.

On the up-side, there is a doctor in Glasgow who is putting a proposal to the ethics committee for a pilot C3R study. The whole point of these studies is that they highlight any potential long term contra-indications.

C3R will not necessarily mean that you will not need contact lenses, the procedure will not necessarily mean that you will never need a cornea graft. The procedure may slow the progress of your KC, but then even if your do nothing your KC may never progress beyond where it is right now!

By all means go ahead, after you have been through the sensible pre=procedure steps, among which would be an interview with the ophthamologist to whom you have already been referred.

Tell her or him that you are thinking of this procedure and ask what she or he thinks about it and its potential advantages and disadvantages.

How goes the battle of the tonsils?

Andrew

explaination of c3r if possible please ?

asylumxl

This post should provide you with the info

http://www.keratoconus-group.org.uk/for ... hlight=c3r

J

thanks! that looks interesting i never knew something like that existed and it seems to work well

ta all, shall do. I am going to go to Dresden i feel that here in the UK 3-4k is far over priced. and by going to Dresden i also get the Professor that has done more than a few people.

Jayboi,

Start brushing up on the German, even the basics. I have found most European countries are far more willing to speak English and help us if we at least try initial introductions and ask for help in their own language.

I know the more senior people in Dresden speak English, but I am not so sure about some of the nurses and the admin staff, i have not had to deal with any of these people yet.

Gareth / JB

You will get by at the Hospital...and also at the Airport and Hotel.......the main people whom you deal with can Speak english to some extent

And if they dont, then they bloody should do and you tell them that! (j/jk)

Jay

My friend who has a Phd's in both psychology and bichemistry beleives the natural language of the brain is English. That is why if you shout loud enough and long enough at anyone anywhere in the world they will soon understand you

To be honest the conclusion to many a conversation like this is only achieved after much alcohol consumption which also helps the brain reach its natural understaing of English and English only.

The only exception is Scotish, especially from Glasgow and the govern area where they speak faster and in even broader Scots. Result is know one understands them which is why the get frustrated and is often confused with an agresive outburst

And now to put a link on another website where my Scotish friend is as i know he will say this is a perfectly true statement