Seph:

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pia2some; I have had Dupuytrens in both hands for 30 years. I hadn't heard of Xiaflex injections until recently but from what I have read I would be inclined to test some other options before going back there.

I am not a medical person and I don't know what effect the Xiaflex injection will have had but looking at your photographs you look to me like a candidate for a simple NA procedure (needle aponeurotomy). Should take 20 minutes or so and no after effects that I have found. Just need to keep the hand covered and protected for 3 days.

Looks like there are a bunch of doctors in the US that do NA. The list is on this web site at

http://www.dupuytren-online.info/NA_list_North_America.html

Thanks. I did look into NA. The closest location to me is in Naples, FL. I am not able to travel at this time due to other health problems as well as having children at home. The surgeon who did the Xiaflex injections was part of the trial studies and has done them for years and is close by. That's why I went that route.

~ dawn


Good luck to you. I had Xiaflex myself and have had to have radiation and 3 NA procedures since then, the last in September of last year. I'll be really lucky if I can wait until 2013 before I need NA again. I know at least a half dozen people--several that participated in the trials with me, another that's a friend and several who have contacted me through private message who have had exactly the same experience. Xiaflex made their DD MUCH MORE aggressive.

Moondanc

I also have had xyaflex twice, and the finger (pinky) is back to a 90 degree angle in less than a year. I am now scheduled for surgery in the fall---that pinky, ring finger and middle finger. I'm not looking forward to it, but some have been very kind and encouraging about that. My doctor tells me I'm not a candidate for NA, and I'm too far advanced for radiation, so it will be surgery..... I also have this in both hands, but only one finger is affected on the "better" hand, although there is a distinct cord down the middle of the hand.

Good luck with your searchings...keep everyone posted.
Marigail

marigail:

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I also have had xyaflex twice, and the finger (pinky) is back to a 90 degree angle in less than a year. I am now scheduled for surgery in the fall---that pinky, ring finger and middle finger. I'm not looking forward to it, but some have been very kind and encouraging about that. My doctor tells me I'm not a candidate for NA, and I'm too far advanced for radiation, so it will be surgery..... I also have this in both hands, but only one finger is affected on the "better" hand, although there is a distinct cord down the middle of the hand.

Good luck with your searchings...keep everyone posted.
Marigail

Hi Marigail,

just curious: did you wear a night splint after you had Xiaflex? My feeling (just that, no proof) is that

a) Xiaflex sometimes softens the cord and which, during manipulation, might then extend instead of breaking. Initially the result is the same, i.e. the finger is straight, but the contrature might come back faster if the cord was not broken.

b) wearing a night splint consistently might help keeping the finger straight. It seems to work for me so far (8 months after the injection).

Wolfgang

marigail:

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I also have had xyaflex twice, and the finger (pinky) is back to a 90 degree angle in less than a year. I am now scheduled for surgery in the fall---that pinky, ring finger and middle finger. I'm not looking forward to it, but some have been very kind and encouraging about that. My doctor tells me I'm not a candidate for NA, and I'm too far advanced for radiation, so it will be surgery..... I also have this in both hands, but only one finger is affected on the "better" hand, although there is a distinct cord down the middle of the hand.

Good luck with your searchings...keep everyone posted.
Marigail