paul3935:

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Hello Dupuytren's Society!

I have only one dermal pit which I am aware of though there may be more trouble areas I am not aware of. I also live in the United States. I have just seen a hand doctor who told me that here, no one treats Dupuytren's with radiation and that its use would be classified as malpractice. Since I am very young (27) and I only have the very early symptoms, and because I use my hands very often, I am interested in doing everything I can to treat this early. Do you have information on treatments I should pursue here in America, or whether I should quickly look abroad for radiation and other work?

Regards,

Paul

Thank you all for your help. I would not know any better if it were not for this wonderful community. I hope I am able to beat Dupuytren's early! I left a review for the dr I saw. I think it is horrible to advise a patient to wait for such a condition to get worse just to have a customer for surgery later. That is truly barbaric. I also think it is unacceptable not to be informed on the most effective options when his clinic claims to see the condition all the time!

Paul in my experience in the US even DD SPECIISTS are not always aware of the technique for RT Therapy. They assume it's a dangerous level of radiation, not realizing it's not like X-ray exposure. it's very little exposure to shrink the nodes over several treatments. Special protective hand covers are made protecting the hand only leaving the nodes exposed for treatment for RT. The technique is usually done by oncologists/radiologists who have trained for DD treatment .

Have you tried contacting the oncologist/radiologists association in ur area. Even my DD specialist that did the Xiaflex injection did not recommended it, only because he was not familiar with the low radiation treatment used for treating the nodes. It's almost better to bring a print out of the RT process from this forum with you for the doc to review.

The Xiaflex was helpful, opened my fingers and my hand is now useful. After that it was recommended to let the hand rest and watch the nodules. Also received a cortizone shot in two nodes in Palm that had become larger which did shrink them. Unfortunately the first hand surgeon DD SPECIALIST did surgery and as a result my hand was worse, after two years, found a dr for Xiaflex injections after reading about it in the Internet and found this forum.

Two years later nodes have not gotten larger. Always protect ur Hands and fingers. If ur worried about the finger contracting wear a splint or FIXXGLOVE every night to keep the contraction in check. Now I am managing the disease on a daily basis. It's seems to have resolved itself for now. It really is better not to do surgery period. See all the info on treatments on his forum. Good Luck.

Peace & Heeling.

Edited 03/29/16 23:06

I too am in early stages (N - left hand, N1 - right hand), and reading on the internet like a maniac (knowledge is power, right?). The orthopedic surgeon specializing in upper extremities who diagnosed DD in my right palm which as 3 nodules, did not mention RT, nor did he mention or check my left hand or feet. I am not surprised, as radiation Drs. and orthopedic surgeons have so little in common, including their work places. My plan is to send the good surgeon information about the progression and RT treatment of my hand(s), and to gently inform my general practitioner, who thought the lumps were ganglion cysts.

Now, for me the biggest problem with obtaining RT is insurance coverage. I'm on Medicare, with a Medicare Advantage HMO plan. So far, they refuse coverage for RT, even though my general practitioner has tried to refer me to two different radiation oncologists who are known practitioners for DD and authorized for other types of radiation treatments. Bummer.

The cost without insurance for 5 + 5 treatments on one hand, including the initial set-up is a staggering $25,000.

Good luck to all of us.

Hi Cherrise,

Thanks for your reply and for sharing your experiences. I had a steroid injection 3 weeks ago, which seemed to reduce the size of the nodules, or perhaps it reduced inflamation. It also reduced the pain. You are the first person I've read about who uses ultra sound massage to manage the nodes and cords. Do you do it yourself, or do you have it done by a physical therapist?

How long have you been dealing with DD?