New to forum. DD contracture 75% in ring finger/nodules on palm of other hand/possible Ledderhose |
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09/16/2015 01:29
gran
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09/16/2015 01:29
gran
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New to forum. DD contracture 75% in ring finger/nodules on palm of other hand/possible Ledderhose
Have DD on left hand with 75% contracture and nodules on right hand. Also have nodules on arch of left foot and pad on right foot. I have seen two surgeons. One gave me information regarding DD and treatment...the other one only does surgery. Was very positive that I would have good outcome. After reading posts on this website, I have reservations about any kind of treatment. i had surgery for DD about 30 years ago by a plastic surgeon. However, at that time I did not realize the implications or the difficulties of having this disease. All was good until about a 2 yrs ago and it has returned and progressed rapidly. Have not seen doctor for possible Ledderhose. Does anyone know a doctor in Dallas TX who recommends RT? From my research, it seems RT might work on the feet and the nodules on right foot. Can't find a doctor who has info. The foot surgeons I have called only operate.
This disease is very confusing. It seems that there is no assurance that any treatment is proven to help. I have two sons with nodules. Any help will be appreciated.
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09/16/2015 07:07
spanishbuddha Administrator
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09/16/2015 07:07
spanishbuddha Administrator
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Re: New to forum. DD contracture 75% in ring finger/nodules on palm of other hand/possible Ledderhose
Welcome to the forum Gran
Sadly right now there is now cure for DD, so it is confusing which treatment to choose, if any, especially when everyone seems to react differently.
For LD the message is clear, avoid surgery on the feet if at all possible, and if relief is not gained through shoes or orthotics then RT is usually helpful. In the US there is some success with Cryo-surgery.
For the hands, just nodules, wait and see is fine, keeping a record of active symptoms and skin changes so you have a record of progession. RT is effective for most if done at the right time, before contracture. Surgery is the option for severe contracture, although there are various types of surgery, and in between it's a question of managing the condition using NA or Xiaflex. But recurrence is always a possibility lurking.
Few hand surgeons will recommend RT, although awareness is growing. Most people in the US seems to make contact with an oncology centre and find a radiologist that way. But you may have to educate the radiologist yourself in the protocol. This is discussed by patients on the FB groups for Dupuytrens and RT, where Dr Schwarz in Dallas Texas Oncology Centre gets a mention. We show an Austin Dr on the treatments page http://www.dupuytren-online.info/radiotherapy_clinics.html
Best wishes SB
Edited 09/16/15 10:09
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09/16/2015 21:40
gran
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09/16/2015 21:40
gran
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Re: New to forum. DD contracture 75% in ring finger/nodules on palm of other hand/possible Ledderhose
THANKS for your encouragement and information. I plan to try and get a diagnose on my feet and then pursue RT. I am not sure what to do about hand. Feel NA and surgery might trigger additional growth of DD. I think contracture is too severe for RT on left hand.
Grateful to find this forum and the opportunity to connect with fellow travelers on this journey.
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09/17/2015 04:51
wach Administrator
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09/17/2015 04:51
wach Administrator
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Re: New to forum. DD contracture 75% in ring finger/nodules on palm of other hand/possible Ledderhose
The chances that NA triggers additional growth of DD are very low because NA is minimally invasive. RT won't relieve contracture. If you want to get fingers straight NA, collagenase or surgery are the options. An overview of disease stages and suitable therapies in on http://www.dupuytren-online.info/dupuytr..._therapies.html.
Wolfgang
gran: THANKS for your encouragement and information. I plan to try and get a diagnose on my feet and then pursue RT. I am not sure what to do about hand. Feel NA and surgery might trigger additional growth of DD. I think contracture is too severe for RT on left hand.
Grateful to find this forum and the opportunity to connect with fellow travelers on this journey.
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09/20/2015 19:17
yosh01
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09/20/2015 19:17
yosh01
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Re: New to forum. DD contracture 75% in ring finger/nodules on palm of other hand/possible Ledderhose
Gran,
Like you, I had I had significant contraction in my left hand, beginning nodules forming in my right hand, and a tender nodule in one foot. Five years ago had NA to fix my left hand and four years ago RT to treat the nodules in my right hand and foot.
Today, the nodules in my right hand and foot are totally gone, but the contraction in my left hand has slowly returned to the point where I'm thinking of another NA. When I do get NA this second time, I'm going to explore the use of RT to see if that can help to prevent a reoccurance.
For me at least, the combination of NA and RT has been effective.
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