| Germany or US for RT? |
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02/05/2010 03:55
AP_in_DC 
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02/05/2010 03:55
AP_in_DC
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Germany or US for RT?
I've definitely decided I want to get RT (thanks to this website and everyone on it -- I wouldn't have even known about RT, much less have become convinced it was the right course, without you guys). And I want to start as soon as possible. I don't have any contracture but my disease seems to be progressing very rapidly, with new cord growth and beginning tightness.
Does anyone have thoughts on getting the procedure in the US versus going to Hamburg to be treated by Dr. Seegenschmiedt? (Assuming I could get in to see him relatively quickly - I don't want to delay.) I know that some people have had good experiences getting RT from U.S. doctors, but I'm concerned that the doctors here don't seem to have had a lot of experience with Dupuytren's. I'm trying to weigh whether it would be worth the additional expense/hassle of flying to Germany in order to be treated by someone who has done hundreds of cases.
Any input would be most appreciated! I'd also love to hear if you have had a positive experience with a U.S. doctor for RT.
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02/05/2010 04:49
flojo 
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02/05/2010 04:49
flojo
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Re: Germany or US for RT?
You're right about this website. This site is how I found out about RT, NA and the docs and clinics that to the alternative treatments.
There are some doctors who have experience in RT for Dupuytren's. The protocol for non-cancerous conditions is much, much less than for cancer. Dr. T at Scripps in La Jolla/San Diego, CA only does non-cancerous radiation. He has done RT for Dupuytren's. I had him do mine. As far as I am concerned, he knows what he is doing. He uses a low dosage of electron radiation - 1.8gy each day Mon-Fri and the same the next week. Dupuytren's on my treated palm has not progressed since. Nodules reduced in size, cords softened. My whole hand is less tight and has better grip/strength. I can open a water bottle now.
Personally, I think any radiologist can do the protocol. I prefer the lowest dosage possible that stops the progression. It stopped mine so fr - 7 months now.
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02/05/2010 05:26
LubaM.
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02/05/2010 05:26
LubaM.
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Re: Germany or US for RT?
I too had RT with Dr. Tripuraneni at Scripps La Jolla. Its only been 3 months since I completed treatment on left hand and left foot. So far the results are very positive, softer nodules, one small cord gone and better range when I open my hand.
I totally trust Dr. T. My dosage was a bit higher than Flojo's...I received 2.0 gys daily for 10 treatments in two weeks for a total of 20 gys.
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02/05/2010 13:04
lori
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02/05/2010 13:04
lori
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Re: Germany or US for RT?
I felt very confident about having RT done at Southeast Radiation and Oncology in Charlotte. When I was searching for someone to treat it, I called Southeast to ask. The receptionist did not know so she said she would ask and call me back. Dr. Crimaldi who treats it called me back (when do you ever have a doctor who does not know you call back?) and had a lengthly discussion concerning the form of treatment. He brought up that he followed the German protocol for treatment. He answered all my questions and I felt very comfortable with them. They made the treatment easy and all went smoothly. I would highly recommend them if you could come to Charlotte.
If you are in Washington DC I have read good reviews in this forum about Dr. Weiss at UV. The last person I remember saying they went there was "Tom from Virginia". You could email him directly from his profile to ask about his experience.
I agree with Flora, don't wait to get treatment. I took this forum's advice and am happy I did. I got use of my hand back.
Lori
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