Newly diagnosed and looking for doctor in SF Bay Area-East Bay |
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06/16/2013 16:58
lr2013
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06/16/2013 16:58
lr2013
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Newly diagnosed and looking for doctor in SF Bay Area-East Bay
Hi, I am looking for a hand doctor for possible Radiation Therapy located in the East Bay of SF Bay Area. I recently saw a hand surgeon thinking I had a cyst on my right ring finger and she abruptly told me that I had Dupuytren's Disease and that there was no treatment available. I had noticed some puckering in my right palm with a few small cysts and recently noticed some starting on my left palm as well. I need to see someone who will take the time to explain the therapies available. I appreciate any assistance.
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06/16/2013 18:31
moondanc
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06/16/2013 18:31
moondanc
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Re: Newly diagnosed and looking for doctor in SF Bay Area-East Bay
lr2013: Hi, I am looking for a hand doctor for possible Radiation Therapy located in the East Bay of SF Bay Area. I recently saw a hand surgeon thinking I had a cyst on my right ring finger and she abruptly told me that I had Dupuytren's Disease and that there was no treatment available. I had noticed some puckering in my right palm with a few small cysts and recently noticed some starting on my left palm as well. I need to see someone who will take the time to explain the therapies available. I appreciate any assistance.
Welcome to the forum.
For radiation therapy in the Bay Area, check out this link:
http://www.dupuytren-online.info/radiotherapy_clinics.html and find: 1)Palo Alto Medical Foundation, Dr. Pauling Chang and 2)University of California, San Francisco,Department of Radiation Oncology Dr. Alexander Gottschalk
They are radiation oncologists and not hand surgeons and I don't believe they diagnose Dupuytren's. Generally, if you have no contraction, you would not need (NA) needle aponeurotomy or Xiaflex.
Click on the treatment tab to find all the options for treatment and also read the forum for more information. Check out this link for doctors: http://www.dupuytren-online.info/NA_list_North_America.html and you will find who may be of more help to you diagnosing and explaining the disease:
Dr. Donald Lewis Muir Orthopaedic Specialists 2405 Shadelands Drive Walnut Creek, CA (California) 94598 Phone: (925) 939-8585
www.dupuytrens.biz
in the East Bay.
Diane
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06/16/2013 19:26
Christl
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06/16/2013 19:26
Christl
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Re: Newly diagnosed and looking for doctor in SF Bay Area-East Bay
Hello IR,
We here in the Bay Area have Dr. Denkler. I already knew I had DD and LD, from what I read, but wanted to hear it officially from a Dr, so I went to him.
Beginning stage you have the option to do nothing . Should nodules pop up one after another, you might consider the RT option, that means your DD is now active. That is the time for RT treatment.
I went to Germany and was treated by Prof. Seegenschmiedt. Outcome: Left hand still no progression, right hand decided to give me a new cord inside the RT area, go figure. So now I wait and IF my finger starts to contract, I will see Dr. Denkler and will do NA. I guess my plan is to do NA as long as possible, IF needed.
Best of Luck, Christl
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06/16/2013 19:55
Alan_Hepburn
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06/16/2013 19:55
Alan_Hepburn
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Re: Newly diagnosed and looking for doctor in SF Bay Area-East Bay
Christl: Hello IR,
We here in the Bay Area have Dr. Denkler.
If you're a member of Kaiser in the Bay Area their Santa Teresa location has some options as well. For open surgery I recommend Dr. Alan Bindiger and for NA I recommend Dr. Stephanie Rowen. Dr. Bindiger did surgery on both my hands several years ago, and Dr Rowen did NA on one hand a little over a year ago and she did a great job. I don't think anyone at Kaiser is doing RT though.
Alan Hepburn San Jose, Ca, USA
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06/16/2013 21:25
lr2013
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06/16/2013 21:25
lr2013
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Re: Newly diagnosed and looking for doctor in SF Bay Area-East Bay
Thanks so much for all the responses. I was feeling really overwhelmed by all of this and now feel that I have some options and can get a second opinion.
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06/16/2013 23:48
bigm100d
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06/16/2013 23:48
bigm100d
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Re: Newly diagnosed and looking for doctor in SF Bay Area-East Bay
If you're ever at a stage needing XiaFlex, I can recommend Dr. Schwartz in Dublin/San Ramon
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06/17/2013 00:20
Jeff
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06/17/2013 00:20
Jeff
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Re: Newly diagnosed and looking for doctor in SF Bay Area-East Bay
Also at Kaiser San Rafael is Dr. Jann Johnson. She did NA on both my hands two years ago. I would highly recommend her for NA if you are with Kaiser. She appears to be very experienced with DD, and Dr Denkler mentioned her expertise years ago on this forum.
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06/17/2013 16:43
moondanc
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06/17/2013 16:43
moondanc
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Re: Newly diagnosed and looking for doctor in SF Bay Area-East Bay
Jeff: Also at Kaiser San Rafael is Dr. Jann Johnson. She did NA on both my hands two years ago. I would highly recommend her for NA if you are with Kaiser. She appears to be very experienced with DD, and Dr Denkler mentioned her expertise years ago on this forum.
I believe Dr. Denkler actually trainer Dr. Johnson.
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07/15/2013 23:42
bstenman
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07/15/2013 23:42
bstenman
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Re: Newly diagnosed and looking for doctor in SF Bay Area-East Bay
There is not physician in California with anywhere near the experience with both NA and Xiaflex of Dr. Denkler whose office is in Larkspur, CA. I have had an NA and two Xiaflex procedures performed by Dr. Denkler. What is unique is his extensive experience with both procedures with hundreds of patients over a period of years. He knows what is going to be the most effective and lowest risk for a particular patient. The cost is the same whether you go to someone like Dr. Denkler or some novice.
My experience with the oncology center of UCSF was that they refused to even consider XRT saying in 2007 it was not a standard treatment in the USA and so the legal liability was too great. When I did have the first round of XRT done in Germany (as a US citizen) the cost was 400 euros. For the second round of treatments at UCSF under the supervision of Penny Sneed the cost was over $10,000 of which my insurance company paid $8400 and I paid the remainder. I became aware of just how bad health care is in the USA with our for profit approach.
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