| Radiotherapy (RT) in California |
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02/26/2011 22:40
tomf 
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02/26/2011 22:40
tomf
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Radiotherapy (RT) in California
I am wondering if anyone can share experiences regarding RT for early stage (pre-contracture) Dupuytren's in Northern California. I have early stage Dupuytren's in both hands. It first started about 5 years ago but continues to progress.
I am interested in answers to the following questions:
1. What doctors/clinics they attended?
2. What was their impression of the level of knowledge regarding RT treatment?
4. How many patients they have treated?
5. What stage they were treated at and what was the outcome?
6. How did this compare to the postings regarding treatment in Germany.
7. Were they referred for RT by one of the leading Dupuytren's doctors in Northern California.
Thanks. Any other advice appreciated.
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02/27/2011 03:03
Diana 
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02/27/2011 03:03
Diana
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Re: Radiotherapy (RT) in California
tomf:
I am wondering if anyone can share experiences regarding RT for early stage (pre-contracture) Dupuytren's in Northern California. I have early stage Dupuytren's in both hands. It first started about 5 years ago but continues to progress.
I am interested in answers to the following questions:
1. What doctors/clinics they attended?
2. What was their impression of the level of knowledge regarding RT treatment?
4. How many patients they have treated?
5. What stage they were treated at and what was the outcome?
6. How did this compare to the postings regarding treatment in Germany.
7. Were they referred for RT by one of the leading Dupuytren's doctors in Northern California.
Thanks. Any other advice appreciated.
1. I saw Dr. Chang in Palo Alto. Before I had RT, I consulted with a hand surgeon, Dr. T in San Diego, and my primary care doctor.
2. I was Dr. Chang's first Dupuytren's patient. He has experience treating keloids and was willing to treat me.
3. Don't know
4. Don't know
5. Don't know
6. Don't know
7. I found him. He was in my medical group - Palo Alto Medical Foundation
Just an FYI, I don't know if other US doctors are doing any studies on RT for Dupuytren's. I asked Dr. T and he basically said that it was more trouble than it was worth (my summation - he was much more professional). It would have been halpful for me to have more than Professor S in Germany to refer to.
Diana
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02/27/2011 14:48
David26not registered
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02/27/2011 14:48
David26not registered
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Re: Radiotherapy (RT) in California
Tom, here is the deal as I understand things.
Basically, you won't get a referral for RT from a hand surgeon. Their training for DD is surgery. RT doesn't exist in their world. A few now do NA as well. Xiaflex is a new option as well.
Most everyone on this board who's had RT self-referred themselves for RT.
There are a handful of radiation oncology centers around the country (US) with some (pretty limited) experience in treating for DD. http://www.dupuytren-online.info/radiotherapy_clinics.html
There are hit and miss experiences with getting your medical carrier to pay for RT.
Professor Seegenschmiedt is the leading practitioner in the world with RT for DD and LD. Some have elected to travel to Hamburg, Germany for radiation therapy with him. He is the only one with any data and history.
There is no U.S. data to answer your #5 and 6.
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03/04/2011 01:31
Lee_B
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03/04/2011 01:31
Lee_B
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Re: Radiotherapy (RT) in California
Hi Tom,
Like Diana, I was treated by Dr. Pauling Chang at Palo Alto Medical Foundation in Palo Alto. My RT was performed last Nov/Dec and I posted yesterday about my experience and the results now that 90 days have passed. In short, it's been very positive. RT has almost completely eliminated any sign of my DD!
Hope this helps.
Lee
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03/18/2011 22:51
bill_c 
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03/18/2011 22:51
bill_c
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Re: Radiotherapy (RT) in California
Hi Tom, I'm in Sacramento. 40 years old with no family history of DD that I'm aware of. I have called both Dr. Chang's and Dr. Gottschalk's offices. I am leaning toward Dr. Chang based on good reviews I have read here but I am not sure how much difficulty I will cross in getting treatment paid for by my insurance. I am actually waiting to meet with a hand specialist to get a diagnosis of DD but am confident that this is the case. I'd be interested in hearing how things go for you and sharing my story with you as things progress. I am very focused on getting RT at this moment as I think I have caught it at an early stage.
Bill
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03/19/2011 17:59
moondanc 
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03/19/2011 17:59
moondanc
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Re: Radiotherapy (RT) in California
I was treated by Dr. Chang, his second patient, in the fall of 2009. The facility, Palo Alto Medical Foundation, has been unable to get reimbursement from Medicare despite exhausting all their appeals. This is kind of strange as I was given to understand they were told it would be covered when they checked prior to treating me. The good result of this for me is that I am NOT liable for any of the costs. I'm not sure why it's not covered as Medicare patients receiving RT at Scripps, also in CA, have been covered.
My treatments-- 1 NA on right hand--first doc, Xiaflex on right hand, another NA- 2nd doc, NA on right hand and left hand by first doc (DD accelerated rapidly after Xiaflex), RT on both hands following NA.
I believe the RT helped my palms--it stopped a lot of the pain, itching and gave me more flexibility. As predicted, it has had no effect on the progress of the disease in my fingers.
Moondanc
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03/20/2011 05:31
LubaM.
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03/20/2011 05:31
LubaM.
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Re: Radiotherapy (RT) in California
Lee_B:
Hi Tom,
Like Diana, I was treated by Dr. Pauling Chang at Palo Alto Medical Foundation in Palo Alto. My RT was performed last Nov/Dec and I posted yesterday about my experience and the results now that 90 days have passed. In short, it's been very positive. RT has almost completely eliminated any sign of my DD!
Hope this helps.
Lee
Lee,
Glad your RT treatment was positive. Would you mind telling us if your RT was covered by Insurance... If so, which Insurance company? and are you on Medicare?
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03/25/2011 00:14
Alan_Hepburn
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03/25/2011 00:14
Alan_Hepburn
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Re: Radiotherapy (RT) in California
I'm new here also, looking for more information on this Dr. Chang - can anyone give me a general idea of what he charges for an initial consultation, and for the treatment? My health care currently is through Kaiser and they don't recognize RT as a valid treatment option so they won't cover it - I'd be paying out of pocket.
My hand surgeon at Kaiser doesn't feel that there is enough data available to say whether or not RT works...
Alan Hepburn
San Jose, Ca, USA
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03/25/2011 01:51
Diana
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03/25/2011 01:51
Diana
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Re: Radiotherapy (RT) in California
I don't know what Dr. Chang charges for an initial consult but before I had RT with him, I paid out of pocket for a consult with Dr. T at Scripps in San Diego and I believe it was less than $200, definitely not more than $300. I called before I went in to get an idea of the cost and I think perhaps I was given a discounted bill because I paid right away.
I'd encourage you to call his office and talk to the people that know about billing and tell them that you would like the "insurance" rate or something to that effect.
Another thing - I researched out of pocket costs for RT both in the US vs. going to Germany and Germany was cheaper, even including the flights, transportation, etc. My insurance ended up paying for my RT with Dr. Chang but if they had not approved it, I would have gone to Germany.
Good luck.
Diana
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