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no need for surgery - ever?
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03/06/2009 03:23
snickers 
03/06/2009 03:23
snickers 
no need for surgery - ever?

I had my doctor's appt today. We had a nice discussion and I was able to talk about a lot of the things I've learned here.

The one weird thing he said is that he does not think my fingers will go into a contracture or need surgery later on because I did not develop DC until I was in my 40's. He said that usually happens when it develops in someone much younger like in their 20's or at least that has been his experience.

Does this make sense to you?

03/06/2009 07:20
Wolfgang

not registered

03/06/2009 07:20
Wolfgang

not registered

Re: no need for surgery - ever?

Everybody is different and I don't think there is a general rule, except that early onset is typically more aggressive. Contracture may happen at any age. At a symposium a case was described where the patient was about 80 when she developed a nodule and her finger contracted withtin a year. My mother developed a nodule also at the age of 80 but never had any contraction, not even a cord until she died with 87. I myself had my first nodule at the age of 35 and had to have surgery eight years ago. It is all very indivdual and very unpredictable. But no need to worry: should you really develop a contracture there are options available to take care of it.

Wolfgang

03/07/2009 02:17
TGrunde

not registered

03/07/2009 02:17
TGrunde

not registered

Re: no need for surgery - ever?

I agree, you never know how it will progress. Mine started in my early 40's, surgery at 48 - couldn't wait any longer - and then it came back in 2 years after surgery. I did the clinical trial injections and snap the cords - painful but worth it - Auxilium just started to try for FDA approval which may happen in 2009 - at least they will numb the pain before the big snap of the cords :)

03/07/2009 07:36
TrevB 
03/07/2009 07:36
TrevB 

Re: no need for surgery - ever?

Quote:



It is all very indivdual and very unpredictable. But no need to worry: should you really develop a contracture there are options available to take care of it.

Wolfgang



Having said that though, radiotherapy is not a good option once one has a contracture so there is some need to keep on top of it early (which may be a worry perhaps for some) if you want to try to avoid/delay invasive techniques.

Cambidgeshire, UK.

03/08/2009 23:37
snickers 
03/08/2009 23:37
snickers 
Re: no need for surgery - ever?

Thank you for your responses. It didn't make much sense what he said. I realize that I may not develop into a contracture, but I want to be prepared for anything that may happen. He did say that ont least one of my fingers have started developing a cord.

I talked to him a little bit about RT. He seemed a little uncomfortable about that and said that he has only had one patient who had had RT. It sounded like that patient pretty much went for the RT on his own and the Dr isn't too much up on RT especially since he said the patient went to "some place" in NYC and I had to mention the name of the hospital - St Vincents, the place listed on this site which he agreed it was the same place.

I also asked him about Xiaflex. He hadn't heard of it by that name, but said maybe it is known by another name. Do you know if Xiaflex goes by another name?

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