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RT doctors in Boston or the northern east coast USA?
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11/05/12 21:53
mrl 
11/05/12 21:53
mrl 
Re: RT doctors in Boston or the northern east coast USA?

Larry - No problem! Thanks. I should have searched your prior posts before making my comment.

I have had tendon problems for most of my adult life. Every couple of years, another problem. I've been running to and from doctors for most of my adult life.

I wish I knew about Dupuytren's earlier. Then I would have recognized the early symptoms, because I would have had RT right away. I will try and make people aware of it, and RT.

I knew I had something going on with my hands, but I didn't examine them closely. I thought it was arthritis. My other health and life problems were taking up all my concentration. Without my knowledge, I was compensating for the nodules and contracture. I only realized the problem totally accidentally a month ago while playing with my hands, when I was listening to a boring conversation. If not for that, I might still not realize that I had the problem.

However, I am not sure at this point that RT would help my one hand that has it, because the nodules are very hard, like "coconut". I'm not sure I have an "active" state of the disease. Only the ring finger has contracture, about 20-30 degrees from the PIP. Everyone I talk to, whether it be doctors or friends who know people with it, all say it's likely not to progress. Then I read about people here, where it does progress. I will continue to read people's experiences, and try and figure out what action I will take. - Mark

11/05/12 22:29
flojo 
11/05/12 22:29
flojo 
Re: RT doctors in Boston or the northern east coast USA?

Mark,

I happen to fully agree with you. One of the things pointed out to me when I met with a Medicare patient's advocate was the lack of American research for Dupuytren's. I told him the German research was by the foremost specialist in the world. He said it makes a difference that it is done in the USA. For insurance/Medicare purposes for all of us, we do need American research with supporting research. I don't agree with that but that's the way it works.

I had RT done in July 2009 at Scripps, La Jolla/San Diego on my right hand on a very agressive case. I had 3 small noduled areas at my first consultation in May. When I went for treatment in July, I had multiple nodules in all quadrants of my palm, loss of grip of that hand, crawly feelings down in the palm, achiness, tightness developing, all of which were constantly in my consciousness. I had very little contracture but my hand had increasing tightness and drawing across my palm from my thumb to my little finger. I had prior NA done in March to release the contracture. The protocol used was electron, 2Gy x 5 days for 2 consecutive weeks, total 20Gy. 3 1/2 years later, no new nodules! I'm very happy! I definitely prefer the least dose of radiation that does the job.

Finished RT 6weeks ago at Loma Linda UMC on my left hand on DD that was not nearly as aggressive as other hand. Nodules have softened significantly, cords less prominent, not as much tightening. My first RT continued to show improvement for up to 5-6 months, so I expect ongoing improvement. RT does not work on cords, as I understand, so I think maybe reducing the nodules takes away an "anchor" and DD prone tissue so cords do not continue to grow. Protocol use at LLUMC was 7 days x 3 Gy for a total of 21 Gy within 14 days using one of the protocols compared in research done by Professor S. I am very happy with both protocols. I didn't plan to use both, but we go to LLUMC when we have major medical issues and it is closer. I called to see if they would do RT for DD. Dr. Katerelos was interested, did his research, and prepared to provide RT. I was not the first patient but would not have hesitated to be.

I chose to have my RT done here. It would not have been impossible for me to go to Germany, but having insurance that covers the actual radiation made a difference. Besides, I have no problem with oncologists/radiologists treating my Dupuytren's when they know how to do RT for brain tumors, prostate gland tumors - you name it - I have full confidence they can treat DD in my hand. I want to know that they have studied research on DD and have them explain their plan. Others may think I made a poor decision, too, but I had successful treatments, neither of which used the German protocol. Less radiation dose = less risk. While RT for DD is such a low dose there is little risk for cancer in the irradiated area, but both protocols using lesser doses has worked for me so I'd make the same choice again.

One thing seems evident to me is that our providers of what used to be considered non-tradidional alternative treatments, NA, RT, and even Xiaflex, are a cut above those who don't care enough to find out about and consider less invasive treatments that are effective. It takes nothing away from Professor S., but I HONOR these dedicated providers who stepped out against the American medical tradition to bring us RT and NA, the same treatments that originated in Europe. I know that going against the "Medical Industrial Complex" was not easy for them, but they did it anyway! The reason we have RT in the US at all and certainly in many clinics/medical centers all over the country is because individuals contacted oncologists and they were willing to help us. 3 years ago there were about 4 who did RT and about 8 who did NA in the U.S. Check out the list now and you see the finest doctors anywhere.

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