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02/12/2018 11:28
Guigs19 
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02/12/2018 11:28
Guigs19
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Doctor in Philly/Central Jersey
Hello everyone,
I am newly diagnosed with Dupuytren's. I am very confused and very nervous about this condition. I have been diagnosed by a hand surgeon but his advice was to do Xiaflex or surgery when the time comes, I have one nodule with a possible one starting. Does anyone have a suggestion for a more knowledgeable hand specialist in the Philadelphia/Central Jersey area. I live in Bucks County, PA. I think I am also interested in the radiotherapy for this condition. Can anyone advise on a practice or doctor in my area that specializes in this treatment?
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02/12/2018 17:04
spanishbuddha  Administrator
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02/12/2018 17:04
spanishbuddha Administrator
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Re: Doctor in Philly/Central Jersey
Guigs19:
Hello everyone,
I am newly diagnosed with Dupuytren's. I am very confused and very nervous about this condition. I have been diagnosed by a hand surgeon but his advice was to do Xiaflex or surgery when the time comes, I have one nodule with a possible one starting. Does anyone have a suggestion for a more knowledgeable hand specialist in the Philadelphia/Central Jersey area. I live in Bucks County, PA. I think I am also interested in the radiotherapy for this condition. Can anyone advise on a practice or doctor in my area that specializes in this treatment?
Welcome to the forum.
Your Drs advice was probably right. Other than RT there is no treatment ahead of a contracture. Xiaflex or NA would be the first line of treatment for a moderate contracture. The majority of people never do get a contracture so you possibly can wait. Our website should help you understand further your options. However, if the condition is active now and progressing with recent new nodules then RT might be indicated.
Dr Pess in New Jersey http://www.centraljerseyhand.com, relatively close to you is probably the top Dr for DD, and NA treatment, and can give you further advice, but will not do RT. He sometimes choooses to inject nodules with a steroid mixture and he would be a good call for a follow up.
Did you see our, incomplete, list of radiologists performing RT https://www.dupuytren-online.info/radiotherapy_clinics.html. Many people in the US contact their nearest oncology centre and ask about experience with treating DD with RT.
Best wishes SB
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02/12/2018 17:41
Guigs19
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02/12/2018 17:41
Guigs19
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Re: Doctor in Philly/Central Jersey
spanishbuddha:
Guigs19:
Hello everyone,
I am newly diagnosed with Dupuytren's. I am very confused and very nervous about this condition. I have been diagnosed by a hand surgeon but his advice was to do Xiaflex or surgery when the time comes, I have one nodule with a possible one starting. Does anyone have a suggestion for a more knowledgeable hand specialist in the Philadelphia/Central Jersey area. I live in Bucks County, PA. I think I am also interested in the radiotherapy for this condition. Can anyone advise on a practice or doctor in my area that specializes in this treatment?
Welcome to the forum.
Your Drs advice was probably right. Other than RT there is no treatment ahead of a contracture. Xiaflex or NA would be the first line of treatment for a moderate contracture. The majority of people never do get a contracture so you possibly can wait. Our website should help you understand further your options. However, if the condition is active now and progressing with recent new nodules then RT might be indicated.
Dr Pess in New Jersey http://www.centraljerseyhand.com, relatively close to you is probably the top Dr for DD, and NA treatment, and can give you further advice, but will not do RT. He sometimes choooses to inject nodules with a steroid mixture and he would be a good call for a follow up.
Did you see our, incomplete, list of radiologists performing RT https://www.dupuytren-online.info/radiotherapy_clinics.html. Many people in the US contact their nearest oncology centre and ask about experience with treating DD with RT.
Best wishes SB
SB,
Thanks for your reply. I guess I should also state that I am 47 so I guess I'm on the younger side for this condition. My father who is 71 has Dupuytren's with multiple nodules and cords in both hands but no contracture. He has never seen a doctor regarding his condition just self diagnosed. He has full range of motion in both hands and no signs of LD. He is not sure but guesses he has had Dupuytren's for 15 years give or take. Is there any chance I could follow in his footsteps with no contracture or am I heading for a more severe case due to age.
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02/12/2018 19:34
Guigs19
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02/12/2018 19:34
Guigs19
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Re: Doctor in Philly/Central Jersey
SB,
Thanks for your reply. I guess I should also state that I am 47 so I guess I'm on the younger side for this condition. My father who is 71 has Dupuytren's with multiple nodules and cords in both hands but no contracture. He has never seen a doctor regarding his condition just self diagnosed. He has full range of motion in both hands and no signs of LD. He is not sure but guesses he has had Dupuytren's for 15 years give or take. Is there any chance I could follow in his footsteps with no contracture or am I heading for a more severe case due to age.
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02/12/2018 21:15
spanishbuddha Administrator
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02/12/2018 21:15
spanishbuddha Administrator
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Re: Doctor in Philly/Central Jersey
Guigs19:
SB,
Thanks for your reply. I guess I should also state that I am 47 so I guess I'm on the younger side for this condition. My father who is 71 has Dupuytren's with multiple nodules and cords in both hands but no contracture. He has never seen a doctor regarding his condition just self diagnosed. He has full range of motion in both hands and no signs of LD. He is not sure but guesses he has had Dupuytren's for 15 years give or take. Is there any chance I could follow in his footsteps with no contracture or am I heading for a more severe case due to age.
The majority of people never get a contracture, despite cycles off and on of progressively developing more nodules and even cords. So, wait and see, although despised by many as the advice of many Drs actually makes sense. I would say wait and see but keep records, photos, measurements, notes of symptoms such as pain, tingling, pins and needles; but also do some research and plan a treatment routine if you need it. Think of maintenance of hand function rather than cure.
Some people just want to be proactive about forestalling any possible contracture and seek out RT, hopefully during one of those active cycles. It’s difficult to make a personal rrecommendation for you, are you one of those people who needs “to do something about it”, or your livelihood very much depends on hand function - artist, musician, seamstress, device operator, sports, etc, in which case maybe you will want to intervene. The condition does have a genetic component so maybe although it’s in your genes, you like your father will have a milder case.
I think if I was you I would ask Dr Pess for a consultation, he has good experience, also look into the possibility of having RT, but then wait and see and keep a journal. But, I’m not you.
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02/12/2018 22:04
Guigs19
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02/12/2018 22:04
Guigs19
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Re: Doctor in Philly/Central Jersey
SB,
Thanks again.
I'm not sure where I fit in as far as being pro active or a wait and see disposition. I think I have many questions that can not be answered. How fast will this progress? Will RT stave off any contractures? If I take the wait and see approach will it be to late for RT? Will RT even work? You get the picture. I have an appointment with Dr. Pess but the the earliest available was April 2nd. I think I will contact some oncology centers starting with Dr. James Wong to see about RT and the process.
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02/13/2018 06:41
wach Administrator
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02/13/2018 06:41
wach Administrator
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Re: Doctor in Philly/Central Jersey
Individually it is unfortunately nearly impossible to predict the progression of Dupuytren's. So you may develop contracture or you may not. The upside is, should you develop contracture the are minimally invasive techniques available to correct that. You might read on this website the pages on Treatment/Needle aponeurotomy https://www.dupuytren-online.info/needle_aponeurotomy.html and Treatment/Collagenase injection https://www.dupuytren-online.info/dupuytren_collagenase.html .
BTW, developing nodules with 47 is not specifically young but rather typical. Men develop first signs of Dupuytren's on an avaregae at the age of 46 https://www.dupuytren-online.info/patient_survey.html . So your age is not a sign of a specifically aggressive form of Dupuytren's. I myself had my first nodule at the age of 35.
Wolfgang
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