hi gary - thanks for responding. i am getting a little lost in the forums - did maddie have treatment at scrips and had recurrence at the edges? i just looked up the dr listed in charlotte as doing RT. someone in the group went there but they have not responded yet. his background is in dentistry! oh dear. i was thinking of going to see eaton in florida for NA and then to hamburg for RT. Did your medical insurance cover any of the germany expense? where are you in the states? I was already trying to look at flights. it doesn't look like there are any nonstop from the east coast to hamburg.I was actually in Frankfurt last spring to visit my son who was a student.

I have not seen any mention by anyone of wrist involvement. I am having pain and weakness and a 'catching; don't know if this is related or not.
thanks
marge

the nodules are definitely getting bigger and have started in the other hand in the last month. I just have one cord that I can tell - in my thumb. So I don't know whether to see Dr Crimbaldi in Charlotte for an evaluation before NA ( as some seem to think RT can help cords) or whether to try to see Eaton or just go to Germany? There is a hand surgeon in town (Winston Salem) who does collagenase but I am hesitant to have that done as i have had a lymph node resection on that side. Is there anyone in the states with much experience for RT? That sure seems to be the way to go.
I do feel I should see a hand surgeon as I am having some kind of involvement in my wrist

Thanks for any suggestions
Marge

Marge,

from what you are writing I think you have a cord but no contracture yet. Is that so? If so, it's too early for NA or collagenase injection. You ought to have an extension deficit of at least 20 degree (typically rather 45 degree) for either treatment http://www.dupuytren-online.info/needle_aponeurotomy.html.

BTW, this web site has a list of US clinics that are treating Dupuytren's with RT http://www.dupuytren-online.info/radiotherapy_clinics.html.

Wolfgang

clarissa45:

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the nodules are definitely getting bigger and have started in the other hand in the last month. I just have one cord that I can tell - in my thumb. So I don't know whether to see Dr Crimbaldi in Charlotte for an evaluation before NA ( as some seem to think RT can help cords) or whether to try to see Eaton or just go to Germany? There is a hand surgeon in town (Winston Salem) who does collagenase but I am hesitant to have that done as i have had a lymph node resection on that side. Is there anyone in the states with much experience for RT? That sure seems to be the way to go.
I do feel I should see a hand surgeon as I am having some kind of involvement in my wrist

Thanks for any suggestions
Marge

Hi guys-- I had a similar situation, with a cord between my right (dominant hand) thumb and index finger that was limiting the range of motion of my thumb and causing some pain. I had NA on that cord by Dr. Denkler last year and have been very happy with it. The thumb is a different situation from fingers because sideways extension is more of an issue. I don't know how exactly how much range of motion I had lost, but my insurance did cover the NA.

Also, I don't want to speak for him, but my impression was that Dr. Denkler thought that it was more effective in general to get NA and/or Xiaflex early -- i.e, when cords were clearly affecting range of motion, even if the contracture was very minor. I currently have a lot of tightness in several fingers in my left hand, to the point where it is difficult to lay my hand completely flat on a table, but no actual contracture in those fingers. However, I can clearly feel the cords there, and they have been growing and tightening up over last few months. So I am going to get an assessment for NA and/or Xiaflex in those fingers. My feeling is -- why wait until they get even worse? Wouldn't it just be harder to fix at that point? Whether my insurance will cover it is another matter, but I'm certainly going to explore my options. If nothing else, I want to have my treatment lined up so the minute they hit that magic degree of contracture, I'm ready to go to the treatment.

Re RT v. NA -- I have also had several rounds of RT, as I've discussed quite a bit in other posts. I had my first session at Scripps in the U.S., and then after I had a recurrence just outside the treated area about a year later, I decided to go to Prof. S. in Hamburg. I was very impressed with him, as others have stated, and just returned from a second round with him. (To sum up, my left hand was now had RT twice in some areas and three times in others, while my right hand has had RT once in some areas and twice in others. Prof. S says he is comfortable with doing three rounds if needed, but no more.)

As I understand it, RT and NA/Xiaflex are two completely different treatments that serve different purposes. RT is to keep the nodules from growing and spreading, which then generates cords. NA/Xiaflex are used when cords already exist that interfere with range of motion in some way. It's also important to note that different parts of your hands (I'll stick to hands because I don't know much about ML) can be at very different disease stages. So, in my mind it's not necessarily a question of "which do you do first," it's a question of what the specific problem is in that part of the hand (active, growing nodules v. cords that are affecting motion) and getting treatment targeted at that problem.

Overall, while there have been some bumps in the road, I can say I have been very happy with using a combination of RT and NA. I am also looking into Xiaflex for a contracture in my right little finger that Dr. Denkler said he couldn't use NA on because of the location of the nerve. I believe I have a pretty aggressive case of Dups that also started fairly early, at 49, and affects all 10 fingers and thumbs. But Dr. Denkler said that given how proactive I have been with getting RT early on, he thought that between RT, NA, and Xiaflex, I would be able to go for the rest of my life without having any functional limitations and without ever having open surgery on my hands. I definitely hope he's right!

One thing that I think we are all really missing is the ability to go to a single doctor who could give us guidance on how to manage this disease. As it is, we do kind of need to figure it out for ourselves (thank god for the help of this forum!) and consult various specialists who have different pieces of the puzzle. There is also the question of how much insurance will cover a "proactive" approach to this disease. I'll keep you guys posted on what I learn.

Sorry for the super-long post, but this stuff is complicated!

Maddie

From N. Betz et al. "Radiotherapy in Early Stage Dupuytren's Contracture - Long Term results after 13 Years" Strahlenther Onkol 186 (2010) p 82-90

"Due to progression of disease 42 patients experienceed a surgical procedure; in 2 cases (5 %) a delayed wound healing was observed."

Wolfgang

callie:

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What is the effect of RT on future surgery for Dupuytren's?