I come from a family of the super-Dupuytren's gene! My grandfather, mother, father, aunt and brother all have it and all have had surgery for it (except my dad, who only has a tiny nodule). I have had Dupuytren's in my right hand for 16 years now (since age 30) and am now at the point where I need to have surgery. I am a competitive cyclist as well as an avid skier, rock-climber, and am generally active and athletic person but am now severely restricted on what I can do, due to inability to flatten my hand as well as significant pain (it has been very painful since day 1 - unlike what is usually described for the condition).

I diligently followed the clinical trials of Xiaflex since I first caught wind of it in the late 1990's, and now that it is finally approved and available, I realize I am not a good candidate. Nor is NA a good option as I'm dealing with large nodules in the finger webs that have entrained the nerves of my pinky and ring fingers.

I'm looking for others' personal experience and recommendations for the best hand surgeons in Washington state, preferably in the Seattle area. I'm also wondering if anyone has found a doctor experienced and willing to do radiotherapy? I have Dupuytren's just starting in my left hand and want to see if I can stop or reverse it's progression with this alternative approach. And perhaps as a post-op follow up for the right hand - to slow the inevitable return of Dupuytren's.

Thanks!

David,

thanks for the suggestions. I have already checked around locally but to no avail (don't know anyone who has had hand surgery in WA - my family members with Dupuytren's all had their surgeries in CO or back east). I did also already try Googling Dupuytren's and Seattle - this basically results in who the hand surgeons are but no real useful info on who is highly recommended. I will check out the ASSH and ABOS websites, though.

Thanks! I've only just this week learned about RT and am wishing I'd heard about it years ago - I would have traveled to Germany for it and with luck have nipped it in the bud! I am still interested in it as a post-op (or post NA) as well as for my other hand which is just starting to develop nodules (not yet stage 1). I've been reading all I can yesterday and today on this forum about it and it looks like a frustrating process to find an experienced practitioner as well as get insurance to pay for it! Per you comment about not getting any encouragement for RT, any suggestions? I take it that you've succeeded in getting RT (but not in my neck of the woods)?

Larry:

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Hi lpgrace,

I was in a similar situation, but very lucky to find Prof. Seegenschmiedt and his clinic located very close to me ! I think he is an expert in EXAMINATION of the hands and feet which I find decisive with regard to any planned radiotherapy ; in addition, he knows ALL OTHER TREATMENT OPTIONS in the different stages of DD; as far as I know he has even some personal experience in doing POSTOPERATIVE RADIOTHERAPY; you may have to approach him and ask for the special circumstances and conditions under which he would do post-OP-RT. Maybe you could combine your post-OP RT with RT of the hand with the early symptoms. As far as I know, the PROF usually answers E-mails, at least mine ...

Good luck and brains with your decision, Larry

Karl--I sent you an e-mail with info about RT in Washington.