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An Australian. Dupuytren's begins.
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08/10/2014 23:10
Coogeematt 
08/10/2014 23:10
Coogeematt 
Re: An Australian. Dupuytren's begins.

Gloria:
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.

Hi Gloria and Kate and Spanishbuddah,
Just here we some contradicting a lines of thought coming. Gloria states that Prof.S suggested to you to wait before rt on hands even though the nodules appear in active stage. And SpanishB suggests that Prof.S recommends that active stage is best time for RT.
Again here is the subjectivity of defining, labelling, quantifying what is what stage within "the early stage" .

08/10/2014 23:15
kate 
08/10/2014 23:15
kate 
Re: An Australian. Dupuytren's begins.

Thanks, coogeematt for your so detailed email. I am going to ask my doctor for the refferal to the prof. Jackson and I have got exactly the same questions as you do. Does he know when it is the right time to do RT, not too early not too late? I think the doctor should determine it, not the patient. Would it be possible to ask him to contact German professor as an administrator spanishbudda on this thread suggested? What do you think?

08/10/2014 23:22
Coogeematt 
08/10/2014 23:22
Coogeematt 
Re: An Australian. Dupuytren's begins.

kate:
Thanks, coogeematt for your so detailed email. I am going to ask my doctor for the refferal to the prof. Jackson and I have got exactly the same questions as you do. Does he know when it is the right time to do RT, not too early not too late? I think the doctor should determine it, not the patient. Would it be possible to ask him to contact German professor as an administrator spanishbudda on this thread suggested? What do you think?

Hi Kate. I am hoping Prof Jackson will have the data and info already from Germany. Will see and will report back here.

And just for this thread could you inform us of your age, when you first noticed the condition, what has developed in your hand/s and at what pace and if you have a family history of the disease?

08/10/2014 23:26
kate 
08/10/2014 23:26
kate 
Re: An Australian. Dupuytren's begins.

I found on www.pushpullsigns.com a quote of Betz ( I do not know who he is, but probably the Dupuytren's doctor and researcher) :RT within first 12 months is the best, however , progression should be confirmed by the RT therapist over 6 months.

08/10/2014 23:36
kate 
08/10/2014 23:36
kate 
Re: An Australian. Dupuytren's begins.

coogeemat, I am 63 y.o., I have just found a small nodule on my right hand 10 days ago and seen only a GP, who sent me for an US, because he thought it was a ganglion( a cyst). He has given me a referral to a Hand surgeon in St. Leonards,( GP said this doctor is very good) and the appointment I have made with him was going to be in two weeks time. I do not know anybody in my family who had this disease .

08/11/2014 00:04
kate 
08/11/2014 00:04
kate 
Re: An Australian. Dupuytren's begins.

coogeematt, if a Prof. Jakson is so knowledgeable , there is probably no need to see a Hand specialist beforehand.

08/11/2014 05:48
spanishbuddha 

Administrator

08/11/2014 05:48
spanishbuddha 

Administrator

Re: An Australian. Dupuytren's begins.

Coogeematt:
Gloria:
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.

Hi Gloria and Kate and Spanishbuddah,
Just here we some contradicting a lines of thought coming. Gloria states that Prof.S suggested to you to wait before rt on hands even though the nodules appear in active stage. And SpanishB suggests that Prof.S recommends that active stage is best time for RT.
Again here is the subjectivity of defining, labelling, quantifying what is what stage within "the early stage" .
Agree. But in many, the majority perhaps of cases, the early stage or beginning settles down, does not lead on to building many nodules or cords, or develops slowly over years. Those cases are probably unsuitable, don't need, RT. That's why a more holistic view or diagnosis is needed, not just examining nodules. I don't myself believe there is a contradiction.

08/11/2014 06:16
kate 
08/11/2014 06:16
kate 
Re: An Australian. Dupuytren's begins.

spanishbuddha, how long do I have to watch nodules in terms of growth or proliferation for? What I understood from your post is until nodules do not grow and new ones and cords do not appear, I should not do RT. Is it so? But what if nodules start growing after one or two or more years, then RT will not be effective .?
I have seen another doctor today and he said why do not I just try steroid injection and may be the nodule just regress and will not appear again. Could it be the case?

08/11/2014 06:35
juliebeesley 
08/11/2014 06:35
juliebeesley 
Re: An Australian. Dupuytren's begins.

Hi Matt,

Please let us know the outcome of your meeting with Jackson. I sent him a photo of my right hand with a nodule on my little finger, and he said it was too early to have RT. I would very much like to know what he advises you.

Cheers
Julie

08/11/2014 07:27
spanishbuddha 

Administrator

08/11/2014 07:27
spanishbuddha 

Administrator

Re: An Australian. Dupuytren's begins.

kate:
spanishbuddha, how long do I have to watch nodules in terms of growth or proliferation for? What I understood from your post is until nodules do not grow and new ones and cords do not appear, I should not do RT. Is it so? But what if nodules start growing after one or two or more years, then RT will not be effective .?
I have seen another doctor today and he said why do not I just try steroid injection and may be the nodule just regress and will not appear again. Could it be the case?
I think perhaps there is a misunderstanding about the meaning of 'early'. The disease is indeed active when first discovered and starting, so that is early. But we have seen that for many there are cycles of active then dormant, re-awakening back to active then dormant again. RT is effective during the early active phases of these cycles, so that may be at the beginning which is usual, or many years later. As newman says there are some indications of how active it may be, and that taken with rate of progression and other holistic symptoms is an indicator of the severity and whether to perform RT, or just wait. There may be some subjectivity here, or rather the experience of the physician, helped by using the weighted symptom score I referred to.

Back to my own experience as an example to help further answer your question. After ProfS declined to treat one hand, two years later I had signs of this re-awakening. I then waited a further 6 months, recording symptoms and growing nodules, before re-seeking RT. So to answer your question, RT can be performed and be effective if done several years after first diagnosis if the condition is (early) in an active cycle.

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