I have ML on both feet (much worse on the left) and DC on both hands (also much worse on the left and since I am right handed, that gives me the idea that perhaps the more you use and exercise the area, the better it is...?). I am beginning to feel pain (definitely itching and tingling both when I start falling asleep and when I wake up and slightly less during the day) in my feet and have heard that RT at an early stage can slow down development and shrink the existing nodules. My question is: is there anyone who has had it done on the East Coast of the US? What were the results? What is the name of the doctor? Did your insurance cover it? I hear so many conflicting theories... I don't know really what to do... (BTW, I am a 64 year old female and everyone on my father's side of the family has DC. I am the only one with ML)

Ledda:

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I have ML on both feet (much worse on the left) and DC on both hands (also much worse on the left and since I am right handed, that gives me the idea that perhaps the more you use and exercise the area, the better it is...?). I am beginning to feel pain (definitely itching and tingling both when I start falling asleep and when I wake up and slightly less during the day) in my feet and have heard that RT at an early stage can slow down development and shrink the existing nodules. My question is: is there anyone who has had it done on the East Coast of the US? What were the results? What is the name of the doctor? Did your insurance cover it? I hear so many conflicting theories... I don't know really what to do... (BTW, I am a 64 year old female and everyone on my father's side of the family has DC. I am the only one with ML)

Edited 07/05/10 19:59

hi,
I hope that my experience with RT will help you. I have had a lump in the arch of my left foot and one on the palm of my right hand for about 20 years. There was no tightness in my palm until about 3 years ago when my hand started to get tight and I was not able to put my hand flat on the table. At this time too I developed a lump in my left hand and one on my thumb. My left thumb has now been pulled in towards my palm and my span is quite severely reduced. This is the next thing to have treated. I am going to France for this.

I took a while to decide what treatment to take. NA treatment is not widely practiced in Australia and I did not want to have surgery so the next alterative was RT.

I was only the second patient that the radiologist had seen which is surprising. I think that the main treatment in Australia would be surgery. Even when I contacted a surgeon who did NA in the information he sent me it was stated that NA had a higher incidence of recurrence. The Radiologists's procedure was modeled on the German model. Any way I had two sessions of RT- 5 days 6 weeks apart. It has been about 3 months now and i have noticed improvements in both hands but the left hand is better. The nodules have reduced and I there is less feeling of tightness.
My right hand was more advanced so the results have not been as good but it does not show signs of getting worse. Both the surgeon I initially consulted and the Radiologist advised not to have treatment - particularly surgery on the feet

I have had no after effects from the RT apart from a little drying of the skin which was easily treated with hand cream. Some of the treatment was covered by insurance but I ended up paying about AUD1200. A holiday in Germany sounds good - I don't think there would be any problems with finding a doctor who speaks good English particularly in the bigger cities. I think it's important to act quickly though as the longer you wait the less effective the treatment.

best wishes,

Ledda, the clinics listed at the bottom of http://www.dupuytren-online.info/radiotherapy_clinics.html all have experience with treating English speaking patients. This will lower the language barrier. The clinics might also be able to recommend close by accomodation.

Wolfgang

Ledda:

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Do you know anyone who had it done it Germany and where they had it done? What about the language barrier?

Ledda,
the nodule on my foot has not really changed much over recent years so I'm not able to offer much useful info here. I only really notice it if I am wearing thin soled shoes and walk on rocky ground. RT may help your condition -I hope so. I take Warfarin after having an aortic valve replaced so I am keen not to have surgery. Btw my RT treatment was with electron beam which I was told was safer as it did not have the same penetration as x-rays.
I am 65 by the way and hit the bottle quite heavily when I was a student. I can remember having aching hands the morning after. I don't drink much these days and it may only be my imagination that my hands seem stiffer after I drink alcohol! My family comes from northern Europe so there's two possible links with Dupuytrens. I hope Germany turns out successfully for you.