I'm newly diagnosed with DD. Please does anyone have experience with Radiation Therapy?
Hello,
I'm Pam, 57 y.o, not diabetic, no family history of DD, I'm fit and usually very healthy. I was just diagnosed with DD. I'm right handed.
I've had Raynauds for many years and in the past year developed Trigger Thumb, had release surgery with no problems. My left middle finger started to trigger and left hand Carpal Tunnel. I had both surgeries two months ago. The carpal tunnel insisting got infected as my body rejected the dissolvable sutures. They were removed after 3 weeks and wrist has mostly healed. A week ago I noticed my palm had a longitudal rope like raised middle. The area also looked swollen and like it was bruised under the skin. I saw the surgeon who said it was DD. I wasn't particularly impressed with his response, which was , it was bound to happen??? Huh, I asked him. After researching a bit I met few of the usual criteria. He basically told me it's part of getting older....
He's referred me to an oncologist for Radiation Therapy. Has anyone had a good experience with RT?
I'm very sad as this is so sudden and hurts when I do most of my usual exercise routines like yoga, cycling and hiking with poles.
Re: I'm newly diagnosed with DD. Please does anyone have experience with Radiation Therapy?
Hi Pam
If you browse around the forum there are lots of people reporting their experience with RT. On the Patients->Personal Experiences page there are reports of people who travelled to Hamburg for it to be done.
The success rate is reported as very high, on the forum and in medical journals. With only a few minor mostly short term side effects. Every now and then people report that it has not helped them, so it's a bit like DD itself - very difficult to predict. It does need to be done dusing an active proliferation phase when nodules and cords are forming.
I am amazed to hear your surgeon recommended RT. Since you have other ongoing issues make sure you consult with an experienced radiologist about the impact on them too.
I myself have had RT, was sceptical that it had worked for about 18 months after, but now am glad that I had it done. In winter I get dry skin with finger end skin splits, but have now worked out a hand moisturising routine that mostly sorts that out.
There is a FB group called DART that may be useful for you to join. Dupuytren's Advocates for Radiation Treatment.
Re: I'm newly diagnosed with DD. Please does anyone have experience with Radiation Therapy?
Hi SpanishBuddha,
Thanks for your prompt reply. It was the only option mentioned to me by hand surgeon. I'm with Kaiser Permanente in Portland, Oregon. I will search RT, I was just overwhelmed by the number of postings my eyes went blurry. I'm still not sure if the insult of the trigger finger started this nasty party on my hand... It's a lesson to be learned I suppose, but it's keeping me from downward dog.
Thanks for your prompt reply. It was the only option mentioned to me by hand surgeon. I'm with Kaiser Permanente in Portland, Oregon. I will search RT, I was just overwhelmed by the number of postings my eyes went blurry. I'm still not sure if the insult of the trigger finger started this nasty party on my hand... It's a lesson to be learned I suppose, but it's keeping me from downward dog.
Re: I'm newly diagnosed with DD. Please does anyone have experience with Radiation Therapy?
Pamonheim:Hi SpanishBuddah,
Thanks for your prompt reply. It was the only option mentioned to me by hand surgeon. I'm with Kaiser Permanente in Portland, Oregon. I will search RT, I was just overwhelmed by the number of postings my eyes went blurry. I'm still not sure if the insult of the trigger finger started this nasty party on my hand... It's a lesson to be learned I suppose, but it's keeping me from downward dog.
A lot of people report that hand surgery, such as for carpal tunnel or trigger finger results in the appearance or a flare up of DD.
Sadly the same is also true for surgical, or NA or Xiaflex treatment of DD. Not all the time and not everyone. Catch22!
Surgeons are often sceptical of RT, and to date either are unaware of it, or poo-poo the very idea. That's why I was surprised. But education and awareness is improving, partly due to conferences organised or attended by the IDS.
There's an example thread here of Kaiser supporting patients having RT http://www.dupuytren-online.info/Forum_E...her-0_1837.html Just remember it's basically a one chance treatment so make sure the timing is right - active symptoms, increasing growth.
Re: I'm newly diagnosed with DD. Please does anyone have experience with Radiation Therapy?
I've been happy with my RT results (once on each hand), but did not have any contracting yet, only nodules. All the hand surgeons told me to stay far away from RT, my radiation oncologist just laughs and says that they fear what they don't understand. So difficult to navigate what to do when every doctor says something different!
Re: I'm newly diagnosed with DD. Please does anyone have experience with Radiation Therapy?
BTW, here is a photo to best show my hand. I just saw my chiropractor who told me she'd never seen DD lok like this. Any thoughts??? This is what showed up 7 weeks after hand surgeries.
Re: I'm newly diagnosed with DD. Please does anyone have experience with Radiation Therapy?
Pamonheim:BTW, here is a photo to best show my hand. I just saw my chiropractor who told me she'd never seen DD lok like this. Any thoughts??? This is what showed up 7 weeks after hand surgeries.
IANAD and making a diagnosis via a photo and description is fraught with difficulties. It does look like bruising, and also calluses rather than nodules. But it needs a physical examination. Any other symptoms, tingling, aches, pins and needles, crepitus, lumps not fixed to either the joint below the palm or the surface skin layer of the palm (DD nodules). I think I would continue as you are to investigate the availability of RT, but hold off doing anything and wait and perhaps seek a second opinion.
Even if it is early DD, it may settle down and not develop further.
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