The forum used to be quite active and the main or only place to go, but now there are several Facebook groups where there is a constant daily high level of activity, and the activity here has died off quite a lot. Some of the reference information, collective documentation, kept in the 'files' section of those FB groups is very good and will likely satisfy your analytical queries, whereas the quality of some of the user posted recommendations can be variable.

As you say the users on here, and Facebook, are self selecting, and tend to be those seeking treatment as well as just general information. The percentage NOT developing contracture averages about 80% but varies by age, diathesis, trauma, genetics. See here https://www.dupuytren-online.info/dupuyt...stribution.html The BDS and IDS promoted an online survey (also self-selecting) that you might find interesting here https://www.dupuytren-online.info/patient_survey.html Some of your other questions might be answered here https://www.dupuytren-online.info/dupuytren_literature.html

I'm in the UK so can't help with US insurance costs, but going to Germany for RT and incurring the travel, stay and treatment costs is cheaper than typical US billed costs but might not be cheaper than the out of pocket deductible or co-pay costs. I did it on a budget from UK, cheap flights, modest motel, ate simply, some sightseeing, the treatment, and could do it at £2000, that's GBP, per week, a few years ago, and you need 2 weeks; flight costs from the US would be more. In the year of my treatment those trips were also treated by me as vacation. However, according to users on the DART FB group Medicare will pay for RT although depending on your insurance class/category (gold, silver, etc) the copay or deductible varies, and you need to ensure the right codes are used and the treating clinic bills Medicare directly (this is gobbledygook to me, just relaying what I read).

You saw ProfS advice on early treatment? https://www.dupuytren-online.info/Forum_...1559373063.html and https://www.dupuytren-online.info/Forum_...44787743.html#2 from a previous thread?

Most US patients either use the RT list provided by DART https://docs.google.com/spreadsheets/u/0...LPV6sksVp1rl2Rs or seek a nearby oncology center that already has experience treating benign conditions with RT including DD or is willing to start.

Edited 10/27/21 15:33

Greetings jlsotr,
Try Dr. Jessica Schuster (https://www.humonc.wisc.edu/team_member/jessica-schuster-md/). You can work with her in either Madison or Johnson Creek.

You will need a referral before her offices will schedule an appointment with you. I suggest you: 1) schedule an appointment with a primary physician and 2) have an examination performed, explain your Dupuytren's symptoms, explain the Radiotherapy option (some doctors are not aware of this treatment and may be hesitant; come prepared) and how you would like a referral. With my experience; the first doctor I saw misdiagnosed me for a "trigger finger" and refused to believe I could have Dupuytren's, and refused to give me a referral (he told me to wait for a contracture, if it "really" was Dupuytren's, and then come back, oblivious that would be too late; that guy was a total joke). I had to seek a second opinion and was confirmed with Dupuytren's and received a referral.

As far a Medicare coverage: I know nothing about what Medicare coverage includes; but I did have Dr. Schuster tell me she has never had an insurance claim denied for her RT sessions (check first, obviously).

Regarding the 80% figure of Dupuytren's patients that never receive contracture; I would say if you are under 50 years of age your chances of contracture are higher.

Track your Dupuytren's with monthly photos, measurements, and notes of "changes" to your hand. The thing with RT (as you have probably read) is that it needs you be done when the disease is active to be most effective.