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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 
09/16/2015 01:29
gran 
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.

09/16/2015 07:07
spanishbuddha 

Administrator

09/16/2015 07:07
spanishbuddha 

Administrator

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

09/16/2015 07:27
wach 

Administrator

09/16/2015 07:27
wach 

Administrator

Re: New to forum. DD contracture 75% in ring finger/nodules on palm of other hand/possible Ledderhose

Hi gran,

welcome to the forum! Reading your post my first comment is that you are very lucky because you had surgery, obviously no problems afterwards and no recurrence for 28 years. This is extremely rare, typical is recurrence already after 5 - 7 years.

There is no reason to be afraid of treatment of Dupuytren's. Compared to surgery the minimally-invasive treatments of contracture, i.e. needle fasciotomy http://www.dupuytren-online.info/needle_aponeurotomy.html and collagenase injection http://www.dupuytren-online.info/dupuytren_collagenase.html, are usually very convenient for patients. They might have side effects, like any kind of treatment, but usually those are quite tolerable. In a major survey with more than 2,000 patients participating, those treatments received quite good ratings http://www.dupuytren-online.info/patient_survey.html.

For Ledderhose the best treatments according to this survey are radiotherapy http://www.dupuytren-online.info/radiation_therapy.html and cryosurgery http://www.dupuytren-online.info/cryosurgery.html. For radiotherapy we are listing a clinic in Austin http://www.dupuytren-online.info/radiotherapy_clinics.html. For cryosurgery we cannot give recommendations because of not enough feedback but in the Internet you can find several clinics offering cryosurgery in TX.

Wolfgang

09/16/2015 21:40
gran 
09/16/2015 21:40
gran 
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.

09/17/2015 04:51
wach 

Administrator

09/17/2015 04:51
wach 

Administrator

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.

09/20/2015 19:17
yosh01 
09/20/2015 19:17
yosh01 
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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