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11/19/2018 17:51
harryzone 
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11/19/2018 17:51
harryzone
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Need doctor recommendation and advice please
Howdy
Recently diagnosed with Dupuytrens. One Saturday less than 2 weeks ago I woke up with a lump on each palm in the exact same spot. A few days later a few faint cords were developing. Now I can see a few other lumps forming next to the original ones. They are still invisible but I can feel them under my skin. Am concerned that I have an aggressive form. Any advice or similar stories would be appreciated. As you all know this all pretty much sucks but things could be worse so I want to fight this thing.
I am a Congo drummer and don't want to give it up or be unable to play. So far the best options to me as far as I can tell is radiation therapy. Problem is the original ortho guy who saw and diagnosed me doesn't believe in anything except surgery. he basically told me to wait and see and when your finger contracts then come and see me.
Id like to see an open minded progressive hand doctor who would support me in doing what I wanted to do and who would give me good advice, pluses/minuses etc. ANYONE KNOW OF ANY IN PA or surrounding area? Am in state college pa and would travel anywhere to get this taken care of.
Any advice would be appreciated.
Thanks
PS anyone have any experience with steroid shots slowing this thing down?
PS2. Male/62 years old
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11/19/2018 20:25
spanishbuddha  Administrator
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11/19/2018 20:25
spanishbuddha Administrator
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Re: Need doctor recommendation and advice please
harryzone:
Howdy
Recently diagnosed with Dupuytrens. One Saturday less than 2 weeks ago I woke up with a lump on each palm in the exact same spot. A few days later a few faint cords were developing. Now I can see a few other lumps forming next to the original ones. They are still invisible but I can feel them under my skin. Am concerned that I have an aggressive form. Any advice or similar stories would be appreciated. As you all know this all pretty much sucks but things could be worse so I want to fight this thing.
I am a Congo drummer and don't want to give it up or be unable to play. So far the best options to me as far as I can tell is radiation therapy. Problem is the original ortho guy who saw and diagnosed me doesn't believe in anything except surgery. he basically told me to wait and see and when your finger contracts then come and see me.
Id like to see an open minded progressive hand doctor who would support me in doing what I wanted to do and who would give me good advice, pluses/minuses etc. ANYONE KNOW OF ANY IN PA or surrounding area? Am in state college pa and would travel anywhere to get this taken care of.
Any advice would be appreciated.
Thanks
PS anyone have any experience with steroid shots slowing this thing down?
PS2. Male/62 years old
Hi Harry
It seems from your other post you are investigating RT as a possible treatment following your diagnosis. RT does seem to help most people with early diagnosis and active symptoms. I don’t know if you need a referral in the US which is why you are asking for a Dr to advise. The Drs will most likely be skilled in NA, Xiaflex or surgery, no bad thing but they straighten contractures. Some Drs are informed about RT, and other early options including a steroid shot. I don’t know if the Dr we list in PA https://www.dupuytren-online.info/NA_list_North_America.html is one, but that would be my starting point. The usefulness of a steroid shot is mixed, some Drs will try it as it calms down inflammation and may, or may not, help with new or early nodules. I don’t know about the Congo drumming; that’s a tough call, I continue to play tennis, with a glove, and the hand absorbs some shock and vibration, but I ice, massage and splint after every game, which helps my feeling of well being with unknown benefit to my hand. You will likely end up in this situation. Best wishes SB
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11/19/2018 21:14
Stefan_K. 
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11/19/2018 21:14
Stefan_K.
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Re: Need doctor recommendation and advice please
Hi. With your rapid progression I would focus on getting RT fast. It worked well for me even at a later stage. I wouldn't count on anything else to halt progression.
Stef
[56, Dupuytren diagnosis 2006, RH contracture and PNF/NA 2014, radiotherapy RH 2015, LH 2017 & 2018, night splint glove RH since 2015]
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11/19/2018 22:00
mominapocket 
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11/19/2018 22:00
mominapocket
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Re: Need doctor recommendation and advice please
Harry,
I answered your other post about Ackerman and saw this post, also. Just wanted to let you know that Ackerman's nurse told me that they had treated a pianist ( I believe he was a classical musician) who made his living playing the piano.
The Ackerman Clinic is an upbeat, professional, clean, and easy to get to place ( off of 295 from Jacksonville Airport). If you have any other questions, please feel free to message me here. I have not been on this site for a long time.
Thank goodness this site existed when I was researching, because I had no idea what dupuytren was when I was diagnosed with it at an annual dermatology visit!
Edited 11/20/18 00:01
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11/21/2018 12:48
jonthepain
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11/21/2018 12:48
jonthepain
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Re: Need doctor recommendation and advice please
mominapocket:
Thank goodness this site existed when I was researching, because I had no idea what dupuytren was when I was diagnosed with it at an annual dermatology visit!
I'll second that. My GP is from the Philippines, maybe that's why he misdiagnosed my hand initially, I am told that DD is unheard of in that part of the world.
Luckily there are two Oncologists in my area that have experience treating DD with RT; they have both met Prof. S and admire him.
I just finished the second course of treatments at Duke Cancer Center and couldn't be happier with Dr. Larrier and the staff.
I am convinced that RT was the correct decision in my case. I only wish that I had been diagnosed and able to find treatment sooner, considering the pace of contracture after initially noticing symptoms. (5 degrees contracture in middle finger and 2 or so in ring finger.)
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