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11/06/2015 01:59
Amitabha 
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11/06/2015 01:59
Amitabha
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New to Dupuytren's
Hi folks,
I recently noticed a nodule, possibly two on my palm about an inch and a half below my ring finger. I have an appointment with my primary care doctor in about 10 days. After doing a lot of research and looking at pics of those with DD, my nodule(s) look like DD and in a location that seems to be a common area of onset. I have no contraction or cords. It's not a cyst or a callous.
I called the hand surgeons within my insurance plans network but they will only see patients who require surgery. I was offered a consultation with a P.A. who is only a general orthopedic practitioner and not a hand specialist, but held off for now.
I have the following questions I hope some of you can answer:
I live in San Francisco and work at UCSF. It's open enrollment and it may behoove me to switch insurance plans in order to access radiation therapy. By any chance, as anyone been covered for radiation therapy with Health Net Blue and Gold or Blue Shield of California? (I read some insurance related threads but none were recent.)
If my PCP cannot diagnose this, who can?
Is it possible that Dr. Pauling Chang or Dr. Alexander Gottschalk (Radiation Oncologists in my area reported to treat DD) can diagnose as well as treat?
Thank you for any assistance; it's greatly appreciated!
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11/06/2015 07:39
spanishbuddha  Administrator
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11/06/2015 07:39
spanishbuddha Administrator
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Re: New to Dupuytren's
Hi amitabha
Usually it is a hand specialist who will diagnose DD, so that is most likely a hand surgeon or a physical therapist. Maybe your GP has some experience and can do the same.
It seems you found our list of clinics using RT http://www.dupuytren-online.info/radiotherapy_clinics.html I would suggest you monitor your 'lumps' and record symptoms as RT is only used in the early phase when there is active proliferation. You don't say your age or give any indication of progression, maybe you will never need any treatment!?
Keith Denkler, a surgeon out of Larkspur is highly regarded and may offer a consultation.
Kind regards SB
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11/06/2015 08:15
Stefan_K. 
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11/06/2015 08:15
Stefan_K.
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Re: New to Dupuytren's
spanishbuddha:
[...] I would suggest you monitor your 'lumps' and record symptoms as RT is only used in the early phase when there is active proliferation. [...]
This is what I had been reading and why I went to see Prof. S. in Hamburg recently to have my left hand treated where my pinky was exactly in that early active stage, with a small nodule growing on my pinky and first cords forming there and between thumb and index finger. To my two-fold surprise, Prof. S. considered RT too early for my left hand, but suggested to treat the right hand instead, on which the index finger had been straightened with PNF/NA a year earlier, and the nodules had been large for several years and thick cords developed already. So I went ahead and had a first round of RT on my right hand with large (more than 5mm) and not particularly active nodules and am waiting with my left hand where activity seems to have made a pause all by itself, as advised by an expert in the field. I will post separately with more time.
So I wonder, who else has had RT on older, larger, not particularly active nodules, with what result?
Is the latest state of science now that the time frame and range of DD conditions for which RT is effective now larger than what is commonly stated here?
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11/06/2015 13:04
dpjcrfsh 
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11/06/2015 13:04
dpjcrfsh
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Re: New to Dupuytren's
Interesting Stephen! I would have though RT for the hand with PNF would be too late, unless he was focusing on parts fo the hand that never had contraction. I'm also surprised he didn't treat the other hand with nodes/cords. I'd think you wouldn't want to wait too long.
I had my RT about 3 weeks ago now and feel like the skin in both hands has tightened somewhat. No growth of node/cords though.
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