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Radiation Therapy - Who does it?
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07/02/2010 12:30
Ledda 
07/02/2010 12:30
Ledda 
Radiation Therapy - Who does it?

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)

07/02/2010 22:09
flojo 
07/02/2010 22:09
flojo 
Re: Radiation Therapy - Who does it?

You can use the Radiation therapy" drop down menu then "Clinics" to find providers. Or use the "Search web site" option in the menu on the left of this page. There have been people on this Forum who had RT done in Charlotte, U of VA and several other places along the East Coast. As I recall, they were pleased with the results.

Some will likely post in response to your post. I had RT on my right/dominant hand and it was so far (a year later) successful. Your symptoms sound like it is active and that is when RT is said to be effective. My RT provider queried me about my symptoms because he wanted to be sure it was active. I'm very glad I had RT. I was 70 at the time I noticed DD symptoms (nodules and cords) and 71 1/2 when I had RT.

07/05/2010 16:58
Larry 
07/05/2010 16:58
Larry 
Re: Radiation Therapy - Who does it?

Ledda:
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)


If you get your cost estimate for 5 - 10 RADIOTHERAPY treatments let us know ! In the US, usually costs between 5.000 - 6.000 USD are charged, way too much when compared with a nice week in Germany and a treatment series of about 500 Euro (= 750 USD ) for one extremity. The people there know how to perform well!

Edited 07/05/10 19:59

07/05/2010 18:13
Ledda 
07/05/2010 18:13
Ledda 
Re: Radiation Therapy - Who does it?

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

07/06/2010 02:28
Palus645 
07/06/2010 02:28
Palus645 
Re: Radiation Therapy - Who does it?

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,

07/06/2010 13:19
Ledda 
07/06/2010 13:19
Ledda 
Re: Radiation Therapy - Who does it?

Thank you so much for sharing your experience with me. I have written to doctors in Germany and Massachussets about the possibility of RT. Especially on my feet. Have you done anything al att about your feet? How advanced is it. Frankly, the feet worry me more than the hands...

07/06/2010 14:56
wach 

Administrator

07/06/2010 14:56
wach 

Administrator

Re: Radiation Therapy - Who does it?

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

07/06/2010 14:59
wach 

Administrator

07/06/2010 14:59
wach 

Administrator

Re: Radiation Therapy - Who does it?

Larry, the price difference is in part due to the use of electron beam equipment in the US. The price you are quoting for Germany is for x-ray treatment only. Electron beams are more expensive in Germany, not more than in the US but more than x-rays. Both types of radiation are suitable for treating Dupuytren's.

Wolfgang

Larry:
If you get your cost estimate for 5 - 10 RADIOTHERAPY treatments let us know ! In the US, usually costs between 5.000 - 6.000 USD are charged, way too much when compared with a nice week in Germany and a treatment series of about 500 Euro (= 750 USD ) for one extremity. The people there know how to perform well!

07/06/2010 18:48
Palus645 
07/06/2010 18:48
Palus645 
Re: Radiation Therapy - Who does it?

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.

09/15/2010 19:59
Larry 
09/15/2010 19:59
Larry 
Re: Radiation Therapy - Who does it?

Ledda:
Thank you so much for sharing your experience with me. I have written to doctors in Germany and Massachussets about the possibility of RT. Especially on my feet. Have you done anything al att about your feet? How advanced is it. Frankly, the feet worry me more than the hands...

Dear Ledda,

the most experience has Prof. Seegenschmiedt who has his practice in Hamburg; the "German Concept"
of radiation therapy was designed by him and he has over 100 patients seen and treated with radiation
therapy - his results have been published during the International Dupuytren Symposium in Mimai 2010:

http://www.dupuytrensymposium.com/program.html

http://www.dupuytrensymposium.com/Abstra...nschmeidt_2.pdf

I know its a long trip but its about your feet and they will carry you all your life
Isn't it worth a trip into a better future ... it was for me the best step to receive radiotherapy !

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