The radiation oncologists at the University of Minnesota don't return my calls or emails, the Dupuytren's NA expert at the Mayo Clinic in Rochester advises against RT, and a neurosurgeon friend of mine refuses to recommend anyone to do what he considers to be unnecessary radiation therapy. Finding RT advice and help in Minnesota should be easier than this, considering the vast number of clinics and hospitals around here.

I'd prefer to deal with someone local, but at this point, I think that's not going to happen. What then do people do? Does it make more sense, and is it cheaper in the long run, to travel to Germany for treatment? About how much are people paying for treatment in Germany compared to the US? My insurance covers NA and collagenase, and I haven't checked on RT, but I think it's doubtful. Are most of you seeking RT biting the bullet and paying for this out-of-pocket?

Since NA and collagenase treatments seem to work very well for Dupuytren's, I'm less concerned about my hands, but I'm getting nodules in my feet and that scares me. I'm thinking RT would be a good start for taking care of my feet.

Thanks,
Tom

Diana's advice is good. You might ask a rad oncologist at UM to call someone at Scripps or one of the other facilities that does a bit of RT for DD. That worked for me. I was the first one treated in my state (as far as I know) and it was through a phone conversation with a couple of places that did the work, plus my rad. onc. reviewing the Prof. Seeg material.

I think in the next 2-3 years RT will be more accepted. A lot of online websites about DD now refer to RT as a therapy. Of course, the hand surgeons continue to be resistant. I think more out of lack of knowledge than anything.

I learned through hours of calling oncology offices to seek out the doctors who do radiation. The practice I found was not even listed anywhere that I could find in the yellow pages. I suggest googling radiation clinics in your area and locating a doctor that way. If you call the exact places that are preforming the radiation they always have doctors onsite and the office will be able to say if they do RT for either Dups or keloids. If they can treat keloids they can treat Dups. I was getting ready to arrange travel to Germany when I fund Dr. Crimaldi in Charlotte. I actually find Dr. Crimaldi through the billing office. I called and asked if they had ever billed the CPT code (provided on this forum in the sidebar) for Dups. They said yes and gave me the main phone number so I could call the main office and talk to the doctors. You can see how desperate I was if I was calling the billing departments. But it worked!

I agree with Diana about compiling research. I did not need to since Dr. Crimaldi knew exactly what treatment I was talking about, and the protocol. Also, if you plan on using your insurance you can always call them for a list of who does radiation in your area. Believe me they have it at their finger tips. It is very frustrating not to find anyone to help. Hopefully you will find someone in your area.

Let us know what you find out and good luck.

Lori

Hi,
This fellow will do it in San Fran. http://radonc.ucsf.edu/faculty/physicians/gottschalk_a.html

I think he charges 10k or more, for several treatments in a row. He emailed me and told me that I'd need to be in town for about 10 days I think. I am trying to get a response from his office, to send the codes for diagnosis and treatment for his RT to my insurance....

Good Luck

Andy