Recommendations for hand surgeons in Seattle? Any doing radiotherapy too? |
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02/27/2011 01:43
lpgrace
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02/27/2011 01:43
lpgrace
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Recommendations for hand surgeons in Seattle? Any doing radiotherapy too?
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!
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02/27/2011 02:10
David26not registered
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02/27/2011 02:10
David26not registered
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Re: Recommendations for hand surgeons in Seattle? Any doing radiotherapy too?
a couple of suggestions on finding a hand surgeon since that is part of your question.
- get references from friends and locals - search the ASSH website http://www.assh.org/Public/Pages/default.aspx - google Dupuytren's and Seattle
some things to look for in a surgeon
- Certified Hand Surgeon (CHS) with subspecialty certificate https://www.abos.org/includehtml.aspx?sectionid=28 - completed a hand surgery fellowship - practice limited to hand is preferable
Edited 02/27/11 16:57
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02/27/2011 19:54
lpgrace
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02/27/2011 19:54
lpgrace
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Re: Recommendations for hand surgeons in Seattle? Any doing radiotherapy too?
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.
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02/27/2011 20:43
David26not registered
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02/27/2011 20:43
David26not registered
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Re: Recommendations for hand surgeons in Seattle? Any doing radiotherapy too?
try this guy http://www.handcenter.org/Huang_Jerry.htm he trained for NA with perhaps the foremost expert in the country - Dr. Eaton
Even though you state you may not be a candidate for NA, it looks like he is a very qualified hand surgeon and has an interest in DD, enough that he visited Dr. Eaton to learn the NA technique. He could best tell you if you are a candidate for NA. The one thing you likely won't get is encouragement for RT.
Edited 02/27/11 22:53
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02/27/2011 21:35
lpgrace
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02/27/2011 21:35
lpgrace
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Re: Recommendations for hand surgeons in Seattle? Any doing radiotherapy too?
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)?
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02/28/2011 17:13
Larry
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02/28/2011 17:13
Larry
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Re: Recommendations for surgery or radiotherapy?
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
Edited 02/28/11 19:15
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06/18/2011 20:29
Karlnot registered
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06/18/2011 20:29
Karlnot registered
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Re: Recommendations for hand surgeons in Seattle? Any doing radiotherapy too?
Larry: 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
I am looking for RT in the state of WA. If anyone finds someone who treats with RT in the state of WA, please email me!
KLKTEX@aol.com
thanks, Karl
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06/18/2011 20:30
Karlnot registered
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06/18/2011 20:30
Karlnot registered
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Re: Recommendations for hand surgeons in Seattle? Any doing radiotherapy too?
lpgrace: 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!
I am looking for RT in the state of WA. If anyone finds someone who treats with RT in the state of WA, please email me!
KLKTEX@aol.com
thanks, Karl
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06/18/2011 21:29
coachG
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06/18/2011 21:29
coachG
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Re: Check your e-mail
Karl--I sent you an e-mail with info about RT in Washington.
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06/19/2011 12:12
f7sharp
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06/19/2011 12:12
f7sharp
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Re: Recommendations for hand surgeons in Seattle? Any doing radiotherapy too?
coachG: Karl--I sent you an e-mail with info about RT in Washington.
CoachG,
Care to share that information with the rest of us? Thanks.
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