long term c3-r

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serge111
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long term c3-r

Postby serge111 » Sat 23 Dec 2006 5:11 pm

was wondering if anyone had just c3-r done like several years ago and what are the results. I know that in short term everyone says it improves your eye a couple of lines but i was wondering whats the effects in the long term. my dr. in los angeles recommended i do it. i am lucky i only have KC in my right eye, but its pretty bad, i think like 20/800 or 20/1000. i have a bunch of other questions but i thought it would be easier to just take it one at a time. thank you for all your replies...

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Postby GarethB » Sat 23 Dec 2006 5:35 pm

The long term results I have seen have been on small European studies of 20 to 30 patients here and there upto about 4 years post op.

The procedure has been in development for about 6 to 8 years howvere the total numbers I do not know, but I am lead to beleive they are far less than there would be in a normal medical clinical trial that would look at the longer term effects of thousand of patients.

For true long term results we would have to wait for another 5 to 10 years to know what the real benefits are. Here in the Uk, this treatment has only started this year.

Sorry I can not help any further.
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Postby Andrew MacLean » Sat 23 Dec 2006 5:47 pm

serge111

Welcome to the forum. I am afraid that it will be some time before results of C3R several years on will be available.

It is hard, I know, but the people going through the procedure now will be the people whose experience will be assessed at 10, 15 and 20 years on. In the meantime the data is being accumulated that will allow people in the future to form the sort of judgement you seek.

All the best

Andrew
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serge111
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c3-r

Postby serge111 » Sat 23 Dec 2006 5:53 pm

thank you for replying. i thought that the procedure started in germany in 1999. so there has to be some ppl who had it done that year or next year...would be nice to hear from these people how they are doing now...its weird too is that i think the only dr. in usa who does this is dr. boxer wachler in beverly hills. luckily i dont live too far from there but its weird why he's the only one doing it in usa

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Postby Andrew MacLean » Sat 23 Dec 2006 6:10 pm

Maybe he is just the first. Others will follow if the procedure has merit. From posts on this site I know that a number of people in the UK and around Europe have found C3R an attractive new development.

All the best

Andrew
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Postby jayuk » Sat 23 Dec 2006 6:22 pm

Serge

My understanding of the reason is as followed

Litigation
Amerca is the worse place on earth for this. As you may know, the value you assign to a Litigation case can be anything as long as your Lawyer can justity the amount. So someone could easily slap an Opthamologist with a $10 Million case against one by merely saying that the treatment wasnt\isnt working and that they werenot told of the consequences etc. Whilst many do sign papers to agree of such things prior to Treatment, a contract can be about as useless as a haddock if there is a single clause that can be challenged.

This is the reason why there are very few still in the USA not offering this. As soon as it gets wider recognition; this will change...but this can take at least 2 more years there...........

Sadly Europe is also changing and that culture is coming over here......where there in an increase of spurious values assigned to cases......

HTH

Jay
KC is about facing the challenges it creates rather than accepting the problems it generates -
(C) Copyright 2005 KP

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Postby GarethB » Sun 24 Dec 2006 7:37 pm

The number of people in Germany who were treated in 1999 barely made it into double figures. The selection criterea was also very strict.

So these factors combined it can not be concluded that the results obtained would be representative of the KC population that are likely to get this treatment.

Doctotrs prefer to use the 'real time' data of those who get the treatment as 'routine' to draw conclusions regarding the long term effectiveness.
Gareth

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serge111
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c3r

Postby serge111 » Sun 24 Dec 2006 11:53 pm

weird, but ud think in 10 years they might have maybe reported the results of ppl treated within the first couple of years and made them public...if i was doing that study thats what i would do...

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Postby John Smith » Mon 25 Dec 2006 1:31 am

Well, one reason for the few people treated with C3R is that the procedure was not "CE" approved until this month.

Now that the treatment has the CE mark though, those of us in Europe will probably find that this will become a more available option.
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c3r

Postby serge111 » Mon 25 Dec 2006 1:50 am

CE approved is probbly same as FDA approved in the states... but still would be interesting to hear from ppl who had it.. i knwo a lot of ppl had...one guy i talked to on the phone from AZ said he experienced no improvement yet other ppl say their corneal thickness increases... with its steep price i just wonder if it really does anything? why cant they just sell the drops that are used in the treatment so ppl use them as eye drops...


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