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An Australian. Dupuytren's begins.
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07/31/2014 23:55
EasyRhino 
07/31/2014 23:55
EasyRhino 
Re: An Australian. Dupuytren's begins.

Interesting.

First, best of luck with your Dupuytren's down under (love visiting there, BTW. Was just down in Sydney a few years ago - lovely).

Anyway, weighing the risks of the low risk dose against the results I have witnessed my father suffering, my conclusion is that the radiation risk is infinitesimally small, and therefore, inconsequential. Additionally, I have been in the professional radiation protection field most of my adult career life, and am a risk assessment evaluator, so the radiation itself does not hold any "mystery" regarding acute of somatic effects.

Again, good luck.

Kevin

08/10/2014 11:11
kate 
08/10/2014 11:11
kate 
Re: An Australian. Dupuytren's begins.

coogeematt, I too live in Sydney. Could you tell me which hand surgeon recommended you to have RT? I can not find any hand specialist who recommends RT. And you said:
"I have made an appointment with Radiation Oncology dept here in Sydney where the Prof of radiology and a hand therapist work together in advising and treating DD with RT. That will add me to their study group and monitor the development of my DD over the coming months/years. "
Could you tell me where this Radiation Oncology Department is? In which hospital?
I have read prof. Seegenschmiedt said, that when nodules become in a state of tennisball or coconut, RT will not be effective and even make them harder. Now I am completely at a loss when is the right time to start RT? If to choose a' wait and see' approach,then the very experienced hand specialist should monitor the progression of a disease.

08/10/2014 12:06
Coogeematt 
08/10/2014 12:06
Coogeematt 
Re: An Australian. Dupuytren's begins.

Hi Kate. The hand surgeon is Dr Myers, Prince of Wales Private, Randwick. The Radiologist is prof Michael Jackson at Prince of Wales Public hospital randwick.

I am unsure of when to do radiation or not. There seems to be no clear answer. I am still to read any detail information from Dr S in Hamburg.
My nodule seems to still be the same. But maybe a little harder.
Studies so far seems to suggest that once at stage 0 with only a nodule and possible cord but no contraction there is a 65% chance that after 5 years with no treatment you will have no contraction develop. Therefore 25% will develop further into contracture. But if you have RT treatment early the chance of contracture developing is reduced to 7%.
But I'm still unsure about when it's right time to have RT . Like when is it active and when not? How to determine correctly how much of my fascia is hardened? It's seems so subjected. There appears to be no protocol to follow.

I have an appointment with Prof Jackson next week. I will ask a lot more questions to help me be sure about a wait and see approach or if I will be convinced to have RT. I will be asking what protocol they use. But I do worry about the subjectivity.

08/10/2014 12:59
kate 
08/10/2014 12:59
kate 
Re: An Australian. Dupuytren's begins.

Thanks, coogeematt. Does dr.Myer treat Dupuyrten's? I have seen his web.site and Dupuyrten's was not listed as his special interest. Did you see prof.M.Jackson before? I am too completely confused about what is a right time to start RT? I have read on www.pushpullsigns.com a personal story of a Dupuyrten''s patient who had RT treatment in Hamburg with the prof. Seegenschmiedt. Very informative but made me more confused.

08/10/2014 16:25
spanishbuddha 

Administrator

08/10/2014 16:25
spanishbuddha 

Administrator

Re: An Australian. Dupuytren's begins.

I don't have a clear cut answer, but ProfS in Germany does an overall health consultation and scores several factors based on the answers, then a physical exam with further scoring. He grades nodules based on their hardness, but also includes other factors since not all nodules or signs are visible or can be felt. Then based on the overall weighted scoring and presumably his own experience or judgement he decides whether to treat or not.

So in my own case I presented with symptoms including nodules in both hands 3 years ago. Following his protocol, which he provides to you as document the decision then was to treat one hand any not the other. I was at the time disappointed not to have one hand treated. But two years later following an increase in symptoms it was re-evaluated, scored and was treated.

I believe ProfS will share his methodology with your doctor via email. I could provide here my record of the analysis used, and have in the past posted a summary in the forum, but better the professionals talk directly.

08/10/2014 16:43
newman 
08/10/2014 16:43
newman 

Re: An Australian. Dupuytren's begins.

Hi to all
I've had RT in 2007 .I developed numerous nodules within 4 weeks of having repeat surgery to my right hand in Adelaide Australia. During the conversation with Prof Seegenschmiedt he mentioned the best time to treat Dupuytrens in the hand is when the disease is an active phase or when the nodules are forming . Some patients describe many sensations in this phase. Some mention an itchy feeling inside the tissue , strange or funny feeling inside the hand. Rt is best suited to treat the nodules and not on cords that have formed which will cause the contraction. With ledderhose it would appear the treatment of cords and nodules have a positive result. The protocol used is 2 sessions of 5 daily treatment of 3GY with up to 12 weeks between the two sessions. You should read the literature in the book written by Seegenschmiedt and others (available on this site-Treatment- Radiotherapy-Literature ). Radiotherapy for Non Malignant Disorders. Hope this helps.

Edited 08/10/14 19:52

08/10/2014 21:33
kate 
08/10/2014 21:33
kate 
Re: An Australian. Dupuytren's begins.

spanishbudda, it has been said on your web.site that " It is most effective to treat the Dupuytren's nodule within the first year, probably best as soon as possible (status idem = stable, not changed". Now it seems not to be the case.What if the nodules get very hard as "coconut" very quickly ( as the prof said), then the RT will not help. It would be great if a doctor has a contact with a German Prof., but how could I tell the doctor about that not offending him? It would be good if you could provide your record of analysis used by a prof, then may be I will show it to my doctor.

08/10/2014 22:14
Gloria 
08/10/2014 22:14
Gloria 
Re: An Australian. Dupuytren's begins.

I'm not sure if this will help or further confuse you. I just returned from seeing Prof S. He treated both of my feet as they were at stage 2. He did not treat my hands - stage n. I do have several small nodules and chords although they are not really visible. I also have the symptoms in my hands that are associated with active disease - sensitivity, and sort of a bruised sensation with overuse and a slight soreness in the area of the nodules. I asked him why he was not treating them at this time and he said it's better to observe as they are in the early stage of disease. When I go back for my second round of RT for my feet he will check my hands again. He will know then if the DD has increased (and at what speed), or remains the same. He didn't seem concerned that it would attack me overnight. It's possible that they will not progress and RT can be avoided. Like others on this site have suggested. Pay attention to your body and watch for changes. There's doesn't appear to be an exact map for how it behaves.

08/10/2014 22:57
Coogeematt 
08/10/2014 22:57
Coogeematt 
Re: An Australian. Dupuytren's begins.

kate:
Thanks, coogeematt. Does dr.Myer treat Dupuyrten's? I have seen his web.site and Dupuyrten's was not listed as his special interest. Did you see prof.M.Jackson before? I am too completely confused about what is a right time to start RT? I have read on www.pushpullsigns.com a personal story of a Dupuyrten''s patient who had RT treatment in Hamburg with the prof. Seegenschmiedt. Very informative but made me more confused.

Hi Kate. Yes Dr Myers treats Dupuytrens. He presented all the facts to me on what treatments are available at different stages ( he was short but informative and seems very knowledgeable. He is also an educator at the local uni). As I am in early stage (only one nodule visible in left palm, and he says he can feel hardening in other hand. Something I can't feel or a hand therapist I went to couldn't feel) he says there is only one option of treatment, RT. Because other treatment is to invasive for a condition that is more than likely not to progress (in the near future). The data shows that only 35% progress over after 5 years. But as Dr Myers points out the condition has a very unpredictable natural history. No one can say what is likely to happen within any individual case. So it is up to me to decide (not the doctors) if I get RT treatment even though there is a chance it may not develop past the my current stage0 for years or even at all (but based on my family history and the fact I have signs at an early stage it is likely that one day I will get contracture starting but possibly not until I am over 70 (53 now). And it is likely that there will be obvious signs of nodules and cords developing before contracture so I will be able to take action then.)

So Dr Myers refer me to Prof Jackson, the radiologist. I have had one appointment. He's not going to make the decision for me either. I am going back to ask more questions.

But on the other hand (excuse the pun) what if I do develop it more quickly. Then I will look back and think I should have had RT as early as possible.
So therefore why not just go ahead and have the RT. The risk of side effects is low (in my non medical opinion). Well I would but then there is the questions about at what stage of "early stage" do I do it. Is it ASAP as some suggests, is it when my hand gets itchy, is when the nodules get very hard, is it when I see an obvious increase in nodule development. Well some would say why not ASAP. But then there is the theory (obviously little evidence for all this) that treating when the nodules and formation is not in an active could make the condition worse.
Then if I do decide on RT there is the questions on how to determine which areas of my hand are hardened, which areas to irradiate and which to protect. It seems like no clean cut protocol on this either. A lot of subjectivity. Even a report from UK national health (buried in this site) speaks of the subjectivity in this area. I have read one case linked in this thread somewhere that they went to Germany for rt and originally had partial hand but then later had whole hand irradiated with better results. And others state that they had one hand done but not other and just had to go back and get other done any way.
So I will see Prf Jackson again and ask more questions now that I am much more informed.
Of course what makes all this difficult is the unpredictable natural history of the disease.

08/10/2014 22:57
kate 
08/10/2014 22:57
kate 
Re: An Australian. Dupuytren's begins.

Probably the best way is to see the doctor every 2 or 3 months and to check if the Dupuytren's progresses or not?

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diagnosis   effective   therapist   Australian   Radiotherapy-Literature   Coogeematt   radiologist   Jackson   condition   hardening   treatment   appointment   possible   spanishbuddha   progression   Dupuytren   contracture   disease   nodules   surgeon