Hi Anthony,
I think you are making a sound decision.......and I could nt agree more regarding our practitioners......I have been in contact with a couple of people in nz who have shown an interest in my case........I have forwarded them my medical assessment and treatment programme from the prof........I hope this encourages them to learn more....
I am sure you will agree.......that after meeting with the prof.........you will be amazed how knowledgeable he is on this disease.......it is like breathing air for him........certainly.......from my experience........practitioners have a very long way to go to have a reasonable understanding of the disease.......and treating it .......without complicating the condition.....I will be wishing you the best of luck in Germany........
Keep in touch
Gary
Hi Gary
Thanks for your response.
I am also 46.
I am in the process of planning my trip to Germany to have both hands and both feet assessed. There seems to have been very few regrets from people who have made the trip. We ANZACs need to keep pushing to improve our practitioners knowledge and experience 'downunder' for our future (and our kids) benefit.
Let us know how the treatment works out.
AB

GaryBall:

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Hi Anthony,
I think you are making a sound decision.......
I am sure you will agree.......that after meeting with the prof.........you will be amazed how knowledgeable he is on this disease.......it is like breathing air for him........certainly.......from my experience........practitioners have a very long way to go to have a reasonable understanding of the disease.......and treating it .......without complicating the condition.....I will be wishing you the best of luck in Germany........

Edited 01/27/12 17:32

Hi Anthony,
I think you are making a sound decision.......
I am sure you will agree.......that after meeting with the prof.........you will be amazed how knowledgeable he is on this disease.......it is like breathing air for him........certainly.......from my experience........practitioners have a very long way to go to have a reasonable understanding of the disease.......and treating it .......without complicating the condition.....I will be wishing you the best of luck in Germany........

Larry:

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Hi Gary and other ANZACS ...

Could You give us a brief report about the way and the whole examination and treatment process in Hamburg as it really sounds amazing to me that you take over 30 hours travelling into account to meet Prof. Seegenschmiedt and his team in the "Strahlenzentrum" where I am travelling from another city in Germany to get my follow-up examinations.
I am a Ledderhose / 2 feet / and Dupuytren's / 1 hand / sufferer myself. When do you travel a second time ...?

I am highly inzterested in your detailed report, all the best ! Larry

QUOTE

Has RT ever failed? I am still troubled by people reporting excellent results. If I would have had RT in my right hand 15 years ago I would have been screaming from the highest mountain about how successful it was 15 years later, that "RT stopped the progression". Well, I didn't have RT 15 years ago and my Dupuytren's in my right hand has not advanced any. It is exactly as it was 15 years ago. This occurred at the same time my left hand (little finger) contracted to 90 degrees. My two hands were parallel in progression, one stopped and one continued to progress.

My question is, "how is the unknown progression figured into the endorsement of RT?"

To para-phrase the question; has there been a randomised control trial of RT treatment for DD?

I have not come across one but will have another look. there have been a number of uncontrolled trials reported. However I have not been able to get access to the papers, many of which were published in the 1950s (see 12 references in Int J Rad Onc Bio Phys 49, 785-798, 2001).

In the limited published long term data on RT (13 yrs) , the following has been reported (Strahlentherapie und Onkologie, 2010:186, 82-90; abstract in English)

In the early stage of the disease 87% of patients receiving RT remained stable or regressed.

RT in later stages was less successful with progression in 60 - 80% of patients

The authors concluded that in the case of disease progression after RT, surgery is still feasible.

The question being asked is; what is the % of patients that would have remained stable or regressed with no RT. Historical data suggests that this is lower than 87% but I do not have the data! Frustrating since I am a scientists and want to see the data.

Medline abstracts are available and a Medline search of Radiotherapy for Dupuytren's is available here (full text: http://www.dupuytrenfoundation.org/DupPD...Medline_XRT.pdf)

Given the low prevalence of RT in Australia, I doubt if there have been many operations post RT so it is rather disingenuous for a hand surgeon to talk about the difficulties of surgery post RT when the published evidence (see above) suggests otherwise.

Finally, I think the contributors to this forum have a great opportunity to collect data that would be very useful. I had one attempt at this but only had 2 respondents. I would be happy to try again and to collect some information on RT in Australia.

Cheers

Stephen

Stephen, There have been randomized studies about the effectiveness of the various protocols in delivering RT. I'm not sure that it has been a treatment long enough to show the results you are asking about. I do agree that we need more research about all treatments and the long term effects.

I wrote a post about 2 weeks ago about the possibility of using the posts on this Forum for research. There is a wealth of information right here.