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Medicare, Southern Wisconsin and miscellaneous newby questions
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10/27/21 07:10
jlsotr 
10/27/21 07:10
jlsotr 
Medicare, Southern Wisconsin and miscellaneous newby questions

Just wondering if Medicare covers RT in the US? And if it doesn’t what is the out of pocket costs? What about the costs in Germany? I have an appointment with a nurse practitioner with my hand surgeon’s practice on Thursday. (I’m 3 months out from wrist surgery for a wrist fracture and have noticed thickening of tissue in palm.). In an email she shared she had never heard of RT for DD so I can only guess my surgeon won’t be knowledgeable either… or perhaps is opposed. So where do I go with this? Do I need to find a hand specialist in the area or the midwest who specializes in DD? I did look at the sheet of Doctors, but when I had looked up a few, their bios didn’t even include DD as an interest or sub speciality. I guess I would have to call. And do you need a referral for RT? My plan is to track this for several months and document and take photos as has been recommended.

I’ve also read that something like 80% of people with DD never develop contractures. Is that accurate? From the reading I’ve done thus far here, it doesn’t appear that way. However, I suppose if people don’t have issues they aren’t seeing a need to frequent a forum? Or perhaps people tend to come when they are dealing with an issue, and then leave for extended periods of time. I’m just trying to get a sense of how a forum like this tends to operate.

I’m also curious if this forum has ever created any collective documentation? I find that as I’ve read threads, I’m looking for commonality with the people that post. What was their age of onset for right/left hand, how long have they had it, what risk factors did they have, what procedures have they done, how successful was that procedure, where do they live, etc. I tend to have an analytical mind so it might just be me but I wish something like that existed. I have noticed that some people post some of this type of information at the bottom of their posts.

Finally, I’m trying not to stress about this likely turn of events, but not so successfully! If you have any pearls of wisdom about this process that might include some positive highlights I’m open ears! Thanks so much!

10/27/21 09:50
spanishbuddha 

Administrator

10/27/21 09:50
spanishbuddha 

Administrator

Re: Medicare, Southern Wisconsin and miscellaneous newby questions

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

10/27/21 17:33
jlsotr 
10/27/21 17:33
jlsotr 
Re: Medicare, Southern Wisconsin and miscellaneous newby questions

Thanks so much for your thoughtful and thorough response. I will certainly look through your linked resources. You are a wealth of knowledge and appreciate the time you devote to this. Super helpful.

11/11/21 00:57
Donny_Barley 
11/11/21 00:57
Donny_Barley 
Re: Medicare, Southern Wisconsin and miscellaneous newby questions

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.

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