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Looking for advice on treatment for Dupuytren’s
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09/30/2021 19:07
Adrian108 
09/30/2021 19:07
Adrian108 
Looking for advice on treatment for Dupuytren’s

I am a 47-year-old male and noticed onset of Dupuytren’s about a year ago in both hands. Both of my parents have Dupuytren’s. I am concerned that I may have an aggressive case due to my relatively young age and the rapid onset of symptoms. I have nodules in both palms and the beginnings of contracture in the middle and ring fingers on both hands. I have recently observed contracture in both thumbs as well. I opted for surgery on my right little finger a month ago which was successful. I have only just learned about radiation therapy which seems a potentially effective therapy for my situation. I’m curious to hear about people’s experience with that and other therapies. I was told by my surgeon that the Dupuytren’s is too ‘diffuse’ to be eligible for the enzyme or needling treatments. I am a stone carver and suspect that may be a contributing factor. Needless to say the thought of losing full use of my hands is upsetting. Thanks for any thoughts/suggestions.

09/30/2021 19:28
spanishbuddha 

Administrator

09/30/2021 19:28
spanishbuddha 

Administrator

Re: Looking for advice on treatment for Dupuytren’s

Adrian108:
I am a 47-year-old male and noticed onset of Dupuytren’s about a year ago in both hands. Both of my parents have Dupuytren’s. I am concerned that I may have an aggressive case due to my relatively young age and the rapid onset of symptoms. I have nodules in both palms and the beginnings of contracture in the middle and ring fingers on both hands. I have recently observed contracture in both thumbs as well. I opted for surgery on my right little finger a month ago which was successful. I have only just learned about radiation therapy which seems a potentially effective therapy for my situation. I’m curious to hear about people’s experience with that and other therapies. I was told by my surgeon that the Dupuytren’s is too ‘diffuse’ to be eligible for the enzyme or needling treatments. I am a stone carver and suspect that may be a contributing factor. Needless to say the thought of losing full use of my hands is upsetting. Thanks for any thoughts/suggestions.
Hi Adrian

It's possible that you are not too late for RT, which does sound without knowing more as being indicated to prevent further progression. A radiologist experienced in treating DD should be able to examine you and advise. We list a couple in your area https://www.dupuytren-online.info/radiotherapy_clinics.html

For sore inflamed nodules a triamcinolone shot may help, and for early contracture with cords a maintenance regime of NA or Xiaflex is preferred ahead of surgery. Maintenance, since the contracture can recur every couple of years or so. You are quite close (!) to Dr Pess in NJ who would be the expert in your NE area of the USA. There has been some reports and user experience of gentle regular massage helping early symptoms too.

Indeed trauma to the hands is a risk factor, so difficult to advise in your case, perhaps more comfortable tools if they exist, gloves if possible, regular icing after work to reduce inflammation, hot soaks to ensure good blood supply, etc.

Best wishes SB

09/30/2021 20:22
Adrian108 
09/30/2021 20:22
Adrian108 
Re: Looking for advice on treatment for Dupuytren’s

Thanks SB. I appreciate you taking the time to share your thoughts. I haven’t gotten back to the stone carving since surgery but will keep those tips in mind when I do. Thanks again.

09/30/2021 22:49
Prof.Seegenschmiedt 
09/30/2021 22:49
Prof.Seegenschmiedt 

Re: Looking for advice on treatment for Dupuytren’s

Adrian108:
Thanks SB. I appreciate you taking the time to share your thoughts. I haven’t gotten back to the stone carving since surgery but will keep those tips in mind when I do. Thanks again.

Dear Adrian,

I am a radiation oncologist who has written several posts on "RADIOTHERAPY FOR DUPUYTREN" in this FORUM - You may find them under the LINK: https://duplife.de/wp-content/uploads/20...and-LD-2020.pdf - You may also want to use these short articles for the solution of some of your questions ...
https://www.dupuytren-online.info/Forum_...ort=&page=1
https://www.youtube.com/watch?v=x_vecaIme58

However, your situation is somewhat "SPECIAL" as you have already undergone a "SURGICAL PROCEDURE" (what type and how many finger have been involved remains unclear without any photographs and lacking a detailed description).

Usually post-OP radiation therapy is not an established radiation therapy practice, but may be still a possible solution under special circumstances, for example : digit 5 with angulation of > 45 degree is straightened by means of a minimal invasive procedure like with needle fasciotomy (NF) or collagenase injection (CI) or by local open percutaneous fasciectomy (PFE); if the remaining fingers are not curled inwards and have only a few other cords and / or nodules to cover the palm underneath digits 2 (index finger) 3 (middle finger) and 4 (ring finger), radiotherapy may be a good option to PREVENT RELAPSE in the operated area and PREVENT PROGRESSION in the not operated but progressive other areas of palm region.

If we could exchange more details about your personal situation (photographs of both hand palms and foot soles and detailed report about the development of the disease - via video consultation - you may want to approach me under my personal E-mail: prof.seegenschmiedt@gmail.com

10/01/2021 13:15
Adrian108 
10/01/2021 13:15
Adrian108 
Re: Looking for advice on treatment for Dupuytren’s

Dear Professor Seegenschmiedt,
Thank you so much for writing. I have found the links and info you provided to be extremely helpful. I will contact you directly shortly.
Best wishes,
Adrian

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