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Post Info TOPIC: Crosslinking again... contemplating about it


Executive

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Posts: 149
Date: Mon Mar 21 5:07 PM, 2005
Crosslinking again... contemplating about it
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I was wondering why we haven't read a post from someone actually experienced crosslinking. Surely there are enough people that has this procedure performed. I just hope that they have no more problems and hence no motivation to participate in forums... if that is so then we have additional pro for the c3r...


 


 



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Anonymous

Date: Mon Mar 21 11:22 PM, 2005
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Hi Valeri, I have read about four personal experiances with X-Linking from kcers (no experiance of which are more than a year)....which is not a lot at all considering X-Linking being such a hot topic in kc.


Maybe when people who are used to being posters on forums go and have X-Linking done will we get people more willing to post about there experiances after they have had this treatment done.


Most experiances I have read do say that they feel so happy about the fact that there kc will not progress (as far as we know). There seems to be some slight improvements in there vision as well.


 


What I would like to know is when the U.S. X-LInking studies are going to be published or released. Once this is done we will have at least two studies from two country's to judge on and compare.


Also I wanted to know if it was possible to repeat the X-Linking proceedure to get better results with regards to vision.


 


Now finding out that the cornea is only five cells thick and a study talking about corneal cell death was a bit bad to hear with regards to X-Linking....I hope two studies from two different sources can prove beyond any resonable doubt that this will not happen.


There was talk of UV used with X-Linking can cause cateracts...but that was just talk from one doctor on the kc-link...I beleive it to be uncollaborated and unsubstantiated claims at the moment. I hope it stays that was as well.


But sure X-Linking is something I would try out out in the near future if things go to plan in the use of X-Linking by Doctors.


Regards 



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Executive

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Posts: 149
Date: Tue Mar 22 7:51 AM, 2005
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The good thing about it is that whoever does it first, he will submit info to the others . It seems that this time I will be the pioneer...



-- Edited by valeri at 07:52, 2005-03-22

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Veteran Member

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Posts: 30
Date: Tue Mar 22 8:31 AM, 2005
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It's possible that nothing "amazing" happens with crosslinking in that you do not get a dramatic improvement in vision. The studies seem to imply that progression is halted which means people stay very much where they are.

While this is good in itself, it doesn't make people jump up and down about their experiences I guess? Also, since KC can stop of its own accord at any point, it is hard to say whether they would have stopped anyway.

I wouldn't have thought the UV exposure would be so much of a problem - people get a good deal more in tropical countries just by walking around during their lifetime!

Lynn

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Executive

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Posts: 149
Date: Tue Mar 22 9:41 AM, 2005
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That all sounds logical, however since I was diagnosed the K is worsening constantly and gradually ... so I believe if there is a halt or improvement due to the procedure I will notice it.  Somehow I am inclined to risk doing a (hopefully) harmless procedure with no real effect instead of waiting for a natural halt that may never happen.


All the publications state that in 100% of the patinets the progression has actually stopped. I think that there is no room for a statistical error here.


My fears are conserned mostly with unexpected effects due to the procedure. My hopes are concerned with the fact that for the 5 or 6 years they are doing it there are no problems with any of the patients performed the procedure... or at least so they say.



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Veteran Member

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Date: Tue Mar 22 5:52 PM, 2005
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hmmm - I thought I saw somewhere that progression starts again after three years? I'll try and and find it.

I do agree that prevention is better than waiting for it to go worse - the problem is though that unless you wait for years you have no idea of long term effects. Which is why it will take a time to be approved for general use. This does not help people waiting to find something that works for them though!!!

The other difficulty is - you cannot be sure that there hasn't been a study somewhere and there WAS a problem and they decided not to publish. People are more reluctant to report bad findings - no-one likes bad news.

I agree its irritating not knowing!!

Lynn

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Anonymous

Date: Tue Mar 22 6:30 PM, 2005
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Hi Guys you both made good points....my kc has stablised for more than two years...it has actually regressed....and if I was in Valeri's shoes I would be very tempted to try cross-linking...

However I wanted to find all the published studies and put in one place so that we can have some measure of it...(I think really there is only one from germany....but I may be wrong about this...as I know they are doing X-Linking in Mexico as well)

I did read that no control groups was used in the german study (don't know exactly how that would work...may be by using a placebo?)

If there was a duplicated study which shows the same results then that will go a long way to give people more confidence!

And you are right Lynn about not publishing of bad results...

It is a real dilemmer....but i think things are moving fast with this and waiting a little while to do some more research would be a good thing to do!

And Valeri....I would probably join you in this treatment after saying all that

-- Edited by QuintriX at 16:33, 2005-03-25

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Executive

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Posts: 437
Date: Tue Jun 28 4:03 PM, 2005
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Concerning crosslinking. In your opinion:


1) how's the choise of the wavelength is done?


2) how's the choise of the timing is done?


3) how's the choise of riboflavin quantity is done?


3) what happens in the cornea? (which molecules are most likely to absorb the light? Is the distribution of riboflavin uniform "in" the cornea?) 


Hopefully, all of the light is absorbed before it reaches the retina. Hopefully the calculus of the intensity and stuff is done with respect to this constraint...


 



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