| California calling-radiation therapy for Dupuytren's on West Coast? |
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03/18/2011 02:42
Diana 
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03/18/2011 02:42
Diana
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Re: California calling-radiation therapy for Dupuytren's on West Coast?
Palo Alto is in the SF Bay area. Dr. Chang from Palo Alto Medical Foundation did my RT. His contact info is on this website.
Diana
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03/18/2011 18:03
bill_c 
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03/18/2011 18:03
bill_c
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Re: California calling-radiation therapy for Dupuytren's on West Coast?
Diana, if you don't mind my asking, how was your experience with Dr. Chang? How old were you when diagnosed and how extensive was your DD? Did you get the results you were hoping for? Do you have any concerns as a result of RT?
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03/18/2011 18:15
lauriw
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03/18/2011 18:15
lauriw
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Re: California calling-radiation therapy for Dupuytren's on West Coast?
Bill,
Hi, I just had my first set of treatments for DD with RT. There is a lot of data on this web site and others that show the risk of RT is very minimal, especially given the potentially crippling effects of DC. I had to find a new oncology radiologist in Iowa to do my therapy and the was declined by BCBS. I appealed and won. If you have any problems with your insurance I would be happy to tell you what I did to win my appeal. If insurance covers the RR and you have a good doctor I don't think that you will have to take the trip to Germany. I am really pleased with the care that I am gettingin Iowa and my doctor has been very detail oriented about my thereapy.
LauriW
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03/18/2011 18:44
bill_c
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03/18/2011 18:44
bill_c
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Re: California calling-radiation therapy for Dupuytren's on West Coast?
Thank you for the response, Lauri! I'm very glad to hear that you are happy with your care in the US. Most of what I have read here seems to center around treatments in Germany. While I would love to take my first trip to Europe, I certainly would prefer it to be for leisure as opposed to being driven by medical need.
I am a bit obsessive-compulsive by nature and I have been scouring this site for any information I can find. So I have been reading about your challenges in getting coverage and others' experience with RT. I may take you up on your offer to let me know how you finally obtained approval. I contacted Dr. Chang's office and they said they would be happy to provide me with the coverage codes that they use.
I am 99.9% sure that RT is the primary course of action I would like to pursue but there is that nagging 0.01% that slightly concerns me. Primarily, my concern is one surgeon's site where they mentioned that RT could potentially make later surgery more complicated. I don't think that's a major hurdle for me to deal with mentally, though. I guess my thought is to gather as many personal stories about RT as I can - particularly about the two doctors I am considering. I am very interested in hearing success/failure stories. Most of what I have read has been quite positive, which is encouraging.
Edited 03/18/11 20:45
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03/18/2011 19:17
bill_c
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03/18/2011 19:17
bill_c
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Re: California calling-radiation therapy for Dupuytren's on West Coast?
Actually, I have one more question for those of you who are responding on this thread. I'm sort of a hypochondriac nervous mess who has had panic attacks since I was in my 20's. I have read theories on some sites that there could be a link between stress and Dupuytren's. It makes me wonder if some of the success rate with RT has been driven by the fact that people who have had RT are able to obtain a little more peace of mind. What is your experience along these lines after having RT?
One of the things that makes me wonder about that link is from reading about a Xiaflex trial where 7% of people given the placebo obtained an increase in their range of motion. That seems like an odd finding for a progressive disease in the absence of any actual treatment.
Of course, I know that Dupuytren's is one of the most harmless autoimmune diseases around so I'm working on relaxing and accepting that my life is still great, despite this disease. One only needs to look across the pond at the tragedy in Japan to get an appreciation for living life in the now.
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