Joyce:

---

Have DD in both hands, right hand severe, have had xiaflex injection twice and on scheduled for 1st round of radiation next month. Have seen 5 hand surgeons. 2 wanted to operate. Their cuts would be extensive and I opted for xiaflex (twice) with no effext. Now worrying potential effects of radiation. Hand pain has accelerated rapidly last 6 months. Any advise? left hand small nodules on palm and contracture little finger..have had no treatment and not rehabilitating.[img][

Moondanc: NA was an option but stats given me of reoccurring were great.Have had DD nearly 10 years. (69 now). Very active yogi and able to flatten hand for "down dog" with pressure. Now impossible to flatten and painful. Also recently excessive itching.

I have little to no concern with radiation/cancer connections. Concern is fibrosis. My nodules are very thick and hard at base of fingers. Contracting cords thumb middle ring and little finger..they are very tender to the touch and particularly at the site of the xiaflex injections. I had 1st xiaflex 2012 in ring finger cord..it did initially help after cord broke but came back more constricted. I had another series 2014 with no effect. Ever since hand is cupped, stiff and achy.Although 69 very fit and active and can not imagine life without exercise involving hand. As well as yoga, I hike and paddle canoe and kayak. Have resorted to glove as poles and paddle pressure hurt. Wonder if I should have the surgery and going radiation route is just delaying inevitable.

If only I could find a fantastical doctor in my in-network healthcare provider area. Have seen 2 surgeons here which left me unsure. Any recommendations for Rochester NY? I found out about xiaflex and RT from DD foundation research onlne and in my case surgeons were not willing to go outside.their area, ie surgeon wouldn't talk xiaflex, nor other talk RT.
I would willingly go through 12 month recovery process if I got someone I had confidence in. As for now have appointment for radiation with oncologist I found name thru DD foundation. Talked with her once..she is up to doing it but know it is all about future progression not reversa. l She wanted to start me on Pentixifylline to soften nodules (I believe) but insurance wouldn't pay because it is used for circulation not DD. When I told.the office.their response was "okay you don't have to take.it" huh?? Guess that's why I'm having mixed feelings about RT.

The effectiveness of any DC treatment is highly dependent upon the skill and knowledge of the doctor. Effectiveness also varies from person to person so there are many "wild cards" when it comes to treating DC. I was advised about 10 years ago that I needed surgery to correct my progressing DC but I couldn't take time from my job for rehab so I procrastinated. When I heard about Xiaflex I started doing a lot of research and found a doc in my area, a plastic surgeon who had performed about 50 successful Xiaflex procedures so I had that done on my left hand in July of 2014. I am extremely pleased with the results and will probably opt for the same treatment on my right hand when the time comes I can no longer use it. So far i can still hyperextend my left hand about 20 degrees or more. I would try to get another opinion from a practitioner who has experience with DD.There is no cure per se, but I think there are doctors who can provide improved remedies. BTW, my doc wasn't in my provider group and my insurance would only cover about 1/3 the cost of Xiaflex, but healthwell Foundation helped me out so there was only about $350 out of pocket. I am now donating back to Healthwell when I can.