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Post Info TOPIC: Crosslinking in younger patients


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Posts: 8
Date: Tue May 5 7:36 PM, 2009
Crosslinking in younger patients
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Hi All,

I've been off this site for a year now, because KC was out of our life (I thought).  My 14 yr. old son, Zack had C3-R in Munich last year at this time. Next week is his anniversary actually. He has had a full year of no progressive degeneration. (his procedure was epi-off). Our MD in Chicago thinks the procedure definitely stalled the progression. 

However, 2 weeks ago when we saw our MD again he is begining to see that disease progression has returned in his good eye. His vision is also changing. Faces are occassionally blurry now.  We are so disappointed that the C3-R is not stabilzing him. Wondering if he is an unusual case because of his young age and all the growth and change that occurs at 13.

My question to all of you C3-R patients is, DOES ANYONE EVER GET C3-R DONE MORE THAN ONCE? IS IT EFFECTIVE? IS IT EVER RECOMMENDED? My MD in Chicago is not familiar with post-crosslinking results in such a young patient, because the proceedure doesn't happen here. He is attempting to communicate w/ our MD in Munich, but I wondered what any of you know about this...

Thanks for your help in advance,   Lisa


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Veteran Member

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Posts: 98
Date: Tue May 5 9:00 PM, 2009
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Hi yes, I read that sometimes it is done twice in very progressive cases, maybe that is needed since he is quite young.  (as i understood KC is progressing more rapidly in younger patients)

There should also be no risk or drawback by doing it twice if needed.

Seems like thoose guys did it twice without no problem atleast.

http://grmc.ca/assets/files/collagen_crosslinking_2008_wolf_long-term-results.pdf


Br Henrik

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Posts: 103
Date: Wed May 6 5:13 AM, 2009
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Hi Lisa,

Progression means that the corneal thickness is decreasing, has your son corneal got thinner ? or is the vision problems subjective ? I say this as because vision can vary day to day for thoisewith KC, and also the cone can move around like a pillow does, plus if contacts are worn because of the greater vision they give uncorrected vision can seem to have gone down.

I agree with what Br Henrik (zenke) posted, and it is the case of the earlier Crosslinking is done the better, at the advancer stages, it may have become too late, but it may have reduced progression if it was not done otherwise, in other words progression may have been more. It is possible to do re-crosslinking, but ask about this with the Opthamologist who treated your son to see if he is a candidate for this.

You are right younger eyes are growing and so that something which could be at play and younger people do have more aggresive progression, as most transplants done for Kc is for the younger amoung us than the older.

KR


-- Edited by Kreading on Wednesday 6th of May 2009 04:14:12 AM

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