I have this incideous malady in both hands. Discovered 3 years ago, and found very few MDs up to date on it or very knowledeable about treatment. Almost all hand specialist immediate recommended surgery-even when it was not too serious, so be cautious of such quick recommendations. My local MD said he would only recommend surgery, not the NA ---3 years later he performs Xiaflex.

Before that I found an MD near Washington, DC (I live in Maryland USA) who seemed to know something so I had NA done on one finger---very painful and to no real positive result--in fact I was going to have the NA in another finger, but called it off due to the overly painfull proceedure. Six or so months later that same MD was one the first to offer Xiaflex in the Washington, DC area... so I had that done --also very painful and left the palm with weird grooves, and I still cant tell if it did any good, though the finger is not as bent anymore, so I guess thats progress. It was so new at the time a Xiaflex representtaive was there to photograph the proceedure close up, not very assuring actually.

Then based largely on this website forum I called a radiation center near Wilmington, Delaware--- over a month or more they gave me about 9-12 doses of radiation on one hand which at the time had only small nogules. It did nothing...absolutely no sign of any improvement.


About a year later I had the cords severed in the hand which had the original NA---that one is now coming back and bending the finger agressively.

On the hand that had the radiation, the cords began to really grow (made me suspicious of the raadiation) and the 1st of this past May I had surgery on 3 of the fingers, with a large amount of the cords removed. Nine stitches and large amount of scar tissue, which makes handling items difficult. At night it is still painful, wakes me up and incidentally, the other hand (surgery) is now almost as painful at night as the first one. The docs say its Carpel Tunnel related... yeah, and so is my prostate problem and loss of hair and etc etc. etc.

In short--I've had all of the proceedures known to medicine for dupuytrens, and frankly one has to accept the fact that each of us will have different results from different proceedures. You can cross the planet, and the results may be the same, here or there. The medical community is apparently not sharing notes and really doesnt have clue about this disease. If radiation works in Germany, what is the dosage, the proceedure, how many times etc etc. - why isnt that shared? Ask any American doctor and they are quick to tell you the foreigners know nothing--like they do?? Fact is nobody knows much of anything about this damn disease.
I have photos of all the work done to my hands -- the football size hand, and lovely purple color as a reminder of the last 3 years.

The only hope is the Xiaflex people will use their profits (it cost about $3,300.00 a shot) to prove their product works. This past Sunday' s Washington Post ran a full page and half ad for Xiaflex, with a reference to finding MDs "registered" to administer it. The only one near me is the guy who 3 years ago only recommended surgery. He apparently changed his mind. Duh!

Please try your own Duputrens methods, but go into all of them knowing it is a gamble in USA - Germany or the South Pole. Maybe some day there will be a more assured fix for all of us, but until then-just like life --it's a crap shoot.
The only thing that keeps me going is seeing women at the radiation lab wearing baseball caps to hide their lack of hair from kemo treatments---and then I just move on, knowing my problem could be a lot worse.

I'm sorry I hope I didnt discourage anyone from trying... you should do that. Just spouting off because I just had a beer...maybe that's the problem-diet!

I have to agree with Spanish Buddha in that I am sorry to hear about the problems that you are having but that the techniques used are being shared.

Using the example of radiotherapy, on this site there is a poster that has been provided by the experts in Germany who have been doing this the longest (true this is for Ledderhose but it is the same protocol)

http://www.dupuytren-online.info/ASTRO_2...se_ASTRO_06.JPG

It even has on the poster the details about the dosese and time frames etc.

Still for the most part I agree with what you have said and finding someone who knows what they are talking about when it comes.

Hope you find something that helps and thanks for sharing what you have learnt along the way.

Gary

Hi Al,

No worries in linking to your post, I found it a very interesting and thorough read and though that people might find it helpful. Thanks for linking back to me and the nice comments.

Thanks

Gary

Eastwind,

Sorry to hear about your experiences. You're absolutely right each case is different even each hand is different.

I had NA done by Dr. Denkler near San Francisco. He and Dr. Eaton in Florida have been doing NA in the USA for the longest time, I believe. There are other competent docs doing NA now. Dr. Denkler has done successful NA on really bent fingers. He also does Xiaflex now and call it another tool in the tool box. I had my NA first done in February 2009.

NA, RT, and Xiaflex has become much better known in the past 3 years. When I was first diagnosed, I was told that I had to wait until my finger was bent almost to my palm then have surgery. Most of us were told that. I give credit to this website for making the information available about the treatment options and the doctors who are passionate about this disease.

I will say that I try to stay more aggressive than my Dupuytren's disease. I'm on top of it. I did not wait for serious contracture, but had NA done at about 20 degrees. I followed that with RT five months later.

I wish you the best.

Flora

Lanod, RT does nothing on cords, however it will shrink nodules. I had one hand with slight cord and nodules, other hand nodules were popping up. Nodules are gone, Cord is still there and will be. Have not had progression. Last RT was last December.
Will be over there soon. Will have my feet zapped. I might as well move over there the way things are going. My husband also started the disease. This is crazy.


Christll