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08/13/2013 07:32
Lanod 
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08/13/2013 07:32
Lanod
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Re: medicare coverage
wlrovin:
The only variable seems to be the expenses involved. If it did not require two sessions separated by 6 to 8 weeks, I would have considered taking a nice vacation to Hamburg.
wlrovin@aol.com
Another opion might be to get your first round of RT in Hamburg and the second (approx. 12 weeks later) in the USA. This would have the added benefit of getting the most experienced doctor (Prof. Seegenschmiedt) to do the initial assessment and to define the treatment area etc. You can email Prof. S. with photos of your hand and suggest that the second treatment might be done in the US. Other people have done this arrange before - i.e. doing the second treatment in the US.
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08/13/2013 18:00
wlrovin 
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08/13/2013 18:00
wlrovin
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Re: medicare coverage
That brings up another issue. How good are the doctors here? Does anybody have any idea how much RT has been done by our docs, particularly for me in Calif, or even Oregon. If you get a first treatment in Germany, do the doctors here use the same pattern based on the German treatment? Are there any success stories (or otherwise) from Palo Alto or SF that would help with my decision? It seems that every answer creates another question.
I want this done, and I want it done right. If I have to pay from my pocket, that is what I will do. I have learned so much in the last few days, thanks to you guys. Knowledge is power, and I am becoming more and more comfortable with my ability to make this very important decision.
Any info on Doctors Chang and Gottschalk would be appreciated. Hopefully they have learned a bit since they started RT.
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08/13/2013 19:28
callie 
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08/13/2013 19:28
callie
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Re: medicare coverage
The crucial ingredient for successful RT is the attack on active cells of the nodule. RT does nothing to inactive cells. That is where the "art" is for this procedure. RT does nothing to prevent future nodules from forming. The actual procedure of doing the RT seems pretty uniform (3 Gy x 5 then a 6-12 week break and then 3 Gy x 5).
So the big determination is "are the nodules active".
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08/13/2013 20:20
spanishbuddha  Administrator
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08/13/2013 20:20
spanishbuddha Administrator
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Re: medicare coverage
Determining when and where to treat requires the main skill. The when part was discussed recently in another thread http://www.dupuytren-online.info/Forum_E...tem-0_1582.html. The where part requires experience with examination so that sufficient margins for treatment are made, whilst minimising risks.
If the published German protocol is followed the treament procedure can be done by a trained radiotherapy technician, after the when and where has been determined.
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08/13/2013 20:25
moondanc
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08/13/2013 20:25
moondanc
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Re: medicare coverage
spanishbuddha:
Determining when and where to treat requires the main skill. The when part was discussed recently in another thread http://www.dupuytren-online.info/Forum_E...tem-0_1582.html. The where part requires experience with examination so that sufficient margins for treatment are made, whilst minimising risks.
If the published German protocol is followed the treament procedure can be done by a trained radiotherapy technician, after the when and where has been determined.
I thought it was quite interesting when the fellow at Scripps-- Dr. Tripuraneni- was doing a 7 day protocol. I don't believe he's doing it any longer. I also thought flojo was getting treatment from another radiologist in So. CA but I can't seem to find anyone on the list-- did I miss him/her?
My radiologist, Dr. Chang, totally agreed with what you say about getting the info and following the German protocol although he's a radiation oncologist and did all the planning prior to a technician doing the actual treatments. I was concerned about the depth and familiarity w/Dupuytren's but he assured me it was basically a no-brainer for a person trained in radiation oncology. I still believe "active" is a moving target definition as long as the disease is spreading.
Diane
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08/13/2013 20:37
moondanc
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08/13/2013 20:37
moondanc
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Re: medicare coverage
I did a search of the archives and Flojo referred to a "Dr K." at Loma Linda--I don't see any info in the clinics section.
Diane
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08/14/2013 20:13
wlrovin
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08/14/2013 20:13
wlrovin
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Re: medicare coverage
Diane, it sounds like you are happy with Dr. Chang, and that he is doing the same treatment as in Germany. Is your gut feeling that he is following the Hamburg protocol? Germany is obviously the place where the most research and treatment has taken place. If the doctors here are doing the same treatments, and hopefully will acceept my medicare, then I am going to try to do Palo Alto.
On another note, when you have the treatment, is there any kind of anesthesia used, is there any pain involved, and do you lose the use of your hands?
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08/14/2013 21:49
moondanc
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08/14/2013 21:49
moondanc
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Re: medicare coverage
wlrovin:
Diane, it sounds like you are happy with Dr. Chang, and that he is doing the same treatment as in Germany. Is your gut feeling that he is following the Hamburg protocol? Germany is obviously the place where the most research and treatment has taken place. If the doctors here are doing the same treatments, and hopefully will acceept my medicare, then I am going to try to do Palo Alto.
On another note, when you have the treatment, is there any kind of anesthesia used, is there any pain involved, and do you lose the use of your hands?
Hi there,
A lot of information on Dr. Chang will follow my comments. I was only his second patient. A woman named Diana, (not me, I'm Diane) was his first patient and she did all the research, was about to go to Germany, then had a consult w/Dr. T at Scripps and then took all her research and protocol from Dr. S (Hamburg) to Dr. Chang and he followed the protocol. If you follow the links below you can read more about it. I believe she did post a further link that said it didn't work for her but I couldn't find it. If you're interested, do a search on "Dr. Chang"
I only had one round of treatment-- I really cannot remember why I decided not to do a second--perhaps it was when she posted? --and while it didn't stop the progression I do feel it helped my palms. It was kind of a crap shoot for me anyway because I was anything but in the beginning stages of DD. I discussed it w/Dr. Eaton and we agreed it wouldn't hurt. One of the links below about Dr. Chang is from a fellow who went to Dr. Chang after I did.
In terms of the RT treatment, to me it was just like getting an x-ray except it lasted a little bit longer. No pain, no loss of use in hands, no problems-- except, of course, for me--the poster child for Murphy's law--if it can happen it will happen to me. I had a slight case of radiation burn on one hand --it may have happened because I got the RT--purposely--only 5 days after NA. My palm got very itchy (I have lots of allergies and the itching was finally controlled with strong steriods--oral and topical) and was red, like a bad sunburn. This lasted for about a week but really didn't restrict the use of my hand. I had no problems whatsoever with the other hand that I had RT on the week before NA. I also have no problems related to RT at this time, I don't even have the characteristic side effect of very dry palms.
(didn't you get my personal email where I gave you these details along with contact info for Dr. Chang and other info?)
OK-- here's your homework assignment:
from Diana, on this forum in 2009:
"I just met with Dr. Chang from the Radiation/Oncology Dept. at the Palo Alto Medical Foundation offices. He is in-network with my medical group and much closer to me than San Diego where Dr. T is. I had Fedex'd his office a stack of paperwork note from me:(studies from Germany) including printed out studies on radiation therapy a few days before my apt. per his nurse's request. Dr T. also sent him the notes from our appointment. Diana"
http://www.dupuytren-online.info/Forum_E...ase-0_1008.html
http://www.dupuytren-online.info/Forum_E...ions-0_589.html
http://www.dupuytren-online.info/Forum_E...ps-0_553_1.html
Do let me know what Palo Alto Med says about Medicare coverage. My husband needs RT!
Diane
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08/20/2013 13:26
breakpoint
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08/20/2013 13:26
breakpoint
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Re: medicare coverage
Just what like everybody says, determining where you want your RT to be taken should be your first step. Once you've decided, you can then ask around for more information before taking it. I know it is hard to get some info especially if it involves figures so better to ask for price range and have the money in hand before the medication. For medicare supplement, try YepMarket. I think they are offering it now.
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08/21/2013 04:27
moondanc
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08/21/2013 04:27
moondanc
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Re: medicare coverage
breakpoint:
Just what like everybody says, determining where you want your RT to be taken should be your first step. Once you've decided, you can then ask around for more information before taking it. I know it is hard to get some info especially if it involves figures so better to ask for price range and have the money in hand before the medication. For medicare supplement, try YepMarket. I think they are offering it now.
I'm not sure what you're trying to say in this post about supplemental but the way that works is that it pays the 20% Medicare doesn't cover. However, if Medicare do NOT cover a procedure the supplemental will not cover it either-- in any amount.
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