Has anyone had or dealt with Dupuytren's Contracture‎?

September 6, 2016 1:30 PM

Has anyone had or dealt with Dupuytren's Contracture‎? If yes, suggestions for treatments that have worked, haven't?

Particularly radiation vs xiaflex and other more invasive treatments?

posted by specialk420 to Health & Fitness (8 answers total)

This won't be of much help if it's a severe case, but I went to a hand specialist for this condition about seven or eight years ago. It wasn't advanced enough to cause significant problems for me, but I was concerned because it seemed to be developing quickly. The doctor measured the degree of contracture and recommended that I monitor it rather than treating it right away. He said to come back if and when it got worse. Since then, it hasn't gotten worse and still doesn't pose any significant problem. So, I'm glad I took his advice and waited.
posted by jkent at 1:40 PM on September 6, 2016

My mom has been doing physical therapy with good results so far. It's not a cure, as I understand, and she's been told that surgery (?) may be needed in the future. I think she's about 5 years out from diagnosis.
posted by chocotaco at 2:29 PM on September 6, 2016 [1 favorite]

A friend recently had surgery to correct this. He'd had it for several years and it had worsened to creating a sort of claw hand. I believe that the surgery snipped the contracting tendon and was fairly straightforward. He is recovering well and happy to have had the procedure!
posted by stillmoving at 8:04 PM on September 6, 2016

I know a family where several people have it. Some of them have had surgery, but it wasn't a cure - the condition continued and came back. I'm not sure what the surgery was; maybe tendon snipping, maybe also something to get rid of nodules. One of them has not had surgery and just constantly stretches and bends his fingers back to try to counteract it. One of them with a pretty bad case was also looking into xiaflex, but I don't remember what their decision was.

I think it depends on how aggressive it is. This family has it pretty severely.
posted by cadge at 9:37 PM on September 6, 2016

Mine came out after a surgery. Fortunately cortisone shots cleared me right up because more surgery would have likely aggravated the whole thing over again.

I had to beg my hand surgeon for the cortisone shots because they aren't supposed to work.

Except when they do.
posted by crankyrogalsky at 11:04 PM on September 6, 2016 [1 favorite]

Radiation therapy is common in Europe, and is available in a few places in the US.
It has better long tern results than other therapies , but has to be done over a week with a followup treatment.
The earlier the treatment the better.
posted by boilermonster at 11:42 PM on September 6, 2016 [1 favorite]

My grandfather had surgery to correct his, and it lasted the remainder of his life (15-20 years). My dad has it but he doesn't have plans to do anything about it just yet. It's common in people of Scandinavian descent.
posted by wwartorff at 11:44 AM on September 7, 2016

Best answer: I've been dealing with Dupuytren's for two decades now. I've had nine procedures between both hands. I have had full open surgery, the needle aponeurotomy and the Xiaflex injections, in that order (as the new techniques became more common.) I've also been a subject in a major study looking at the benefits of post-procedure physical therapy. By far, I prefer the Xiaflex treatment. Open surgery has you looking at a lengthy recovery period of a few weeks. The NA treatment is somewhat shorter. But the Xiaflex has you in one day for the injection, one for the release, and the next day you can play the piano. It's important to note I've had recurrence of contracture with every procedure. For me, I view Dups as something that can't be cured only periodically treated. Thus, the Xiaflex treatment, which is covered by my insurance, is the least disruptive and most successful treatment. I have gone years between treatments. Also, I used Xiaflex when my little finger was contracted over and almost touching my palm. It was straightened to just short of full extension and has remained there for over five years. I'm also a believer that, with a severe contracture, the physical therapy and post-procedure bracing was essential in stopping/delaying recurrence. There is some evidence that bracing and therapy actually affects the skin layers on a physiological, not just physical, basis. As a professional cartoonist, and someone who claims playing the guitar and piano among his favorite hobbies, all this is of some importance to me. Feel free to message me if you'd like to know more. Good luck.
posted by lpsguy at 11:56 AM on September 7, 2016 [3 favorites]