| Vancouver get together - discuss where you are in cycle and treatments you have done/considered |
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05/08/2013 02:12
MikeNinerSeven 
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05/08/2013 02:12
MikeNinerSeven
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Vancouver get together - discuss where you are in cycle and treatments you have done/considered
Hi everyone,
I live very near Vancouver British Columbia and I have Dupuytrens. I have seen a surgeon and he suggested surgery (of course) and said none of his patients ever did other treatments (NA, RT, Collagenase, .....). (No, I did not get it done.)
It started in my left hand and now is in my right hand and my left foot. (I am mid50s and do not look forward to having this for the rest of my life.)
So, I recently got together with another internet forum group in Vancouver, had dinner and swapped what worked and what didn't. I thought getting a group together from this forum might help me make up my mind as to what to do. I am seriously considering RT but am looking at some of the new treatments, just have not had time to read up on them.
So, is anyone game for an evening discussing their situation, what worked and what you are considering and why?
It is May 7th so why don't we plan for sometime in early June. Just post here saying you in and send me a pm. I will e-mail possible dates as we get some numbers and closer to the day.
Looking forward to getting some help / more information.
Cheers,
MikeNinerSeven
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05/08/2013 03:08
callie 
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05/08/2013 03:08
callie
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Re: Vancouver get together - discuss where you are in cycle and treatments you have done/considered
Mike, that is an interesting approach. I personally know about 20 people with Dupuytren's. The different approaches to the disease are about as varied as each individual. You will find that there is no "right way" or "wrong way" for everyone. I had surgery (90 degrees contracture) and would do it again. I had RT and would do it again (if covered by insurance). Generally, RT with active nodules and before 5 degrees contracture. After five degrees contracture, the choice is NA or Xiaflex. Then after 40 degrees contracture either surgery, NA or Xiaflex. Or, a person could do like most people and do nothing and learn to accommodate.
There is a good group of people on this forum with a lot of experiences about Dupuytren's. You can learn probably more here than anywhere.
Edited 05/08/13 06:10
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05/08/2013 04:19
MikeNinerSeven
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05/08/2013 04:19
MikeNinerSeven
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Re: Vancouver get together - discuss where you are in cycle and treatments you have done/considered
So, dumb question, why RT with before 5 degrees and active nodules? Why not RT at any stage and with NA?
Thanks,
MikeNinerSeven
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05/08/2013 06:24
spanishbuddha  Administrator
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05/08/2013 06:24
spanishbuddha Administrator
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Re: Vancouver get together - discuss where you are in cycle and treatments you have done/considered
MikeNinerSeven:
So, dumb question, why RT with before 5 degrees and active nodules? Why not RT at any stage and with NA?
Thanks,
MikeNinerSeven
There are different phases associated with DD, and it is during the 'proliferation' phase that myofibroblasts are producing an abundance of a certain type of collagen. RT has been shown to be useful for slowing that down. This is why we say on here have RT when it is 'active'. Contracture occurs after, or maybe at the same time as proliferation, and RT will not help with the contracture itself.
People have had NA to straighten fingers, and then RT afterwards when DD has recurred (becomes active again).
More info on this site in the sections on treatment, disease and reference.
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