Phaneo:

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I'm 38 years old and just noticed the first nodule last January. So within one year I have gone from one small nodule to a full-blown cord on my ring finger with additional large nodules on my thumb, pinky, index finger, and middle finger.
Thanks.

Molloy:

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spanishbuddha:

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I don't think I'm in a position to answer this adequately, "Seegenschmiedt and those around him". The phrase "those around him" is hard to get past, as those around him are others working in the same field which is what you would expect. ProfsS publishes his data as papers or in books, and others do to, with some available on PubMed but not all, for both Dupuytren's and Ledderhose and other conditions as well. He also presents at international conferences, and invites his peers who are doing the same treatment to do their own research, collect data, and publish too. It's up to others to step up and for more of them to publish their results as well. The only negative responses I have seen is from hand surgeons, but that has been so far in private correspondence and was refuted. He does not claim a cure, or prevention, just a slow down or halt in existing proliferation for the majority. That is anecdhotally reflected by experience reported here and elsewhere.

By "those around him," I meant not the whole field of researchers publishing on Dupuytren's or on radiotherapy, but specifically other people closely associated with him (e.g., his co-authors on some of his papers) or his institutional location in Hamburg. That is, it seems almost all the research literature on this comes from that relatively small group of people. I'm just wondering why there apparently is not a larger group of researchers outside Hamburg and Germany more broadly who are interested in investigating this. None of this is meant as any kind of denigration of Seegenschmiedt, of course. I'm quite happy that SOMEONE is investigating it, just curious as to why more are not perking up and doing their own research, given the results S. presents in his published work.
best,
Molloy

spanishbuddha:

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Well I too am just a patient, so what follows is just my own personal perspective.

In Europe at least, I would say the Hamburg centre is a pioneer in the use of RT for conditions other than cancer. So, benign tumours and also inflammatory conditions (such as tennis elbow!). Other European countries have professional medical structures and specialisations, that do not provide for those doctors using radiotherapy as a cancer treatment to explore outside of their cancer speciality. Radiologists in the UK as an example, are technicians, skilled technicians, but not permitted to perform this type of research. Last time I met ProfS in person he asked me why the two doctors in the UK performing RT were not publishing their results. The only defence I could give at the time was that they were at least speaking about it at medical conferences. Also I would say it is not solely ProfS and those around him who are publishing, I have seen papers from others, albeit shown to me in person by ProfS. At least that which is published is subject to peer review, and as one example the UK body called NICE which has to approve all medicines paid for out of public funds, and is generally conservative or parsimonious to say the least, has approved RT after reviewing the literature and hearing in person from the medical profession.


As an aside, and by comparison or contrast. It is well established and now acknowledged by many, that many medical drugs in recent years have been introduced despite the use of misleading and tainted data on drug performance from the major pharmaceutical companies. Examples abound where they don't publish bad results, publish only partial results, mislead over context of results, structure trials to deliver a desired outcome, and so on. People have died because of this, and yet it continues. So you are wise to do your research, but do this same the next time you buy an OTC medicine or ask your doctor for a prescription.

I am not sure whether Prof. Seegenschmiedt will do any consultation without you seeing him. The radiotherapy per se is easy to apply, the benefit of an experienced doctor is diagnosis, palpation, and the definition ot the radiation field. Consultation via the internat is not meaningful and how could he charge for his consultation? I don't expect that he will rate his US colleagues either. It's probably better to ask these question in this forum.


Wolfgang

Molloy:

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... I'm going to try to get in touch with Seegenschmiedt, although I doubt I could get across the pond to see him anytime soon owing to my job. Perhaps he knows something about who the best practitioners of RT are in the US? Seems to be such a wide variety here, including some who pretty clearly are coming at the thing more or less cluelessly and artlessly.
best,
Molloy

The authors Betz et al. mention in their paper "Radiotherapy in Early Stage Dupuytren's Contracture - Long Term results after 13 Years" Strahlenther Onkol 186 (2010) p 82-90 in the paragraph on "late efects"

"Due to progression of disease ... 42 cases experienced a surgical procedure; in 2 cases (5%) a delayed wound healing was observed."

In a summary of complications after surgery by Keith Denkler http://www.eplasty.com/index.php?option=...&Itemid=116 wound healing complications are to be expected in 0-86%, average 23% of the cases. The 5 % observed by Betz et al. are well within this range and therefore probably not due to the prior irradiation.

In their abstract the authors are stating "In case of disease progression after radiotherapy, a "salvage" operation is still feasible."

Molloy:

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I also asked Seegenschmiedt if he could perhaps point me to any more detailed information on the claim that RT can potentially make later surgery more complicated or even impossible, which he implicitly discounts in one of the chapters in the book on RT for non-malignant conditions but without any explanation. Does anyone by any chance know where I can find more discussion of this in the literature?
best,
Molloy