To LubaM and flojo:

Cords and nodules are not exactly the same tissue. Growing nodules hold a much higer percentage of myofibroblasts and those are the ones most affected by RT, or rather RT reduces production of myofibroblasts (if you are interested in medical details you might have a look at http://www.dupuytren-online.info/DEGRO_2...lular_basis.pdf ).

Because of that RT is efficient on growing nodules and has much less effect on existing cords. From my personal experience radiating a cord doesn't make much difference, although that is difficult to tell from just one personal experience (2 cords). If you have a single cord and had that cord broken by NA I don't see not much benefit in haveing the cord then radiated. RT won't do much on the cord and radiating the gap doesn't make sense to me. Now there might be opposing opinions but that's my take.

Wolfgang

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This is great news. The Prof. has a passion for helping patients, particularly in the area of Benign Disorders including Dupuytrens and Ledderhose. Might I suggest that patients particularly in the US send the link ( below) of the symposium to be held in Miami to their surgeon. The more interest the better in an endeavour to make the conference a success. Regards.

Prof. Seegenschmiedt will return from his sabbatical and start treating patients beginning January 2010. He will treat at a Hamburg clinic (Strahlenzentrum Hamburg Nord) using electron beams (the address is at the bottom of http://www.dupuytren-online.info/radiotherapy_clinics.html).

Further he will continue to treat patients in the Essen area, too. Details will be released soon.

Prof. Seegenschmieedt is on the board of the Dupuytren conference 2010 http://dupuytrensymposium.com/ and member of Dupuytren Society.

Wolfgang

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Edited 12/30/09 06:33

Chris, give us an update when you can on any improvements you note

I had a NT procedure done on both hands by an experienced hand surgeon, Dr. Denkler in Larkspur, CA and he misdiagnosed the extent of the progression of the disease in my right hand. No way could I have self-diagnosed the progression and the longer you wait the less effective the XRT treatment.

If I knew at the time of my first contracture of the nature of the disease and the availability of XRT my hands would be in much better shape today (and for the next 20 years). 99% of the GP's in the USA do not even know there is a progressive disease known as Dupuytrens and considering that statistics show it so be present in less than 3% of the USA population this can be understood. Go to Norway where the figure is around 30% and one could expect much better advice from the local GP.

Even hand surgeons in the USA want to use the same methods they have been using for the past 20 years of their practice and very few have started to provide NA which has been in use for decades in France. I paid $400 for a consultation with a Dr. Ronald Gemberling who teaches at Stanford and I was given substantially false information about the risks of NA, the risks with a fasciectomy, and the probable physical therapy and recovery times after the open hand surgery procedure with its 90 minute tourniquet time.

I would recommend getting the XRT as soon as you can and to let Dr. Seegenschmiedt do the palpation of your hands to determine the extent of the disease progression. He then will make a treatment map of your hands that is the area to be radiated and the machine is adjusted by the technician to only radiate that portion of your hand(s) and no more.

I believe the sooner you can get XRT the less the likelihood you will need NA or other surgical procedure in the future. In the USA doctors worry a great deal about getting sued for not following established medical practices and so are ultra conservative in making changes to treatment for any disease. It took a couple decades for ulcers to start being treated with antibiotics in the USA in spite of the scientific evidence of the bacterial causes.

I can fully support my positive experience with Prof. Seegenschmiedt both in Essen, where he
worked until June 2009 and now in Hamburg since January 2010. He is extremely knowlegable
and very diligent in his physical examination. He also explores very carefully whether the bad
disease is active ,.i.e. growing nodules or cords or cgange of functional status etc.

I had Ledderhose Disease (i.e. the Dupuytren of the foot) but have now starting Dupuytren on
my left hand ( my working hand is right !). We are still observing as there are early symptoms,
but after a waiting period of 6 months we both will decide whether the "acrivity" is worthwile to
consider radiation therapy ... I like this careful approach very much !

It's just a recommendation to seek the advice of a very nice man and truely scientific person !