I'm sure you've figured out that you have to be your own advocate with this disease. Mine started in 2000, and the one hand really didn't do much of anything until 2012. The other hand began, showing nodules and contractions, in about 2007....and that has been very aggressive. I did have the xylaflex injections (2) to no avail. But, I am most definitely a female and did need a PIP joint release besides the NA.

Best of luck in your search---stay proactive!!!
marigail

Sunshine_89; I think you can be pretty certain that it is not DD causing the contracture. Doesn't mean you don't have DD but you can be reasonably confident that the contraction you are experiencing is not caused by DD.

DD has periods of activity that usually has an odd itchy feeling when lumps or cords are forming. Then you can have long periods (Sometimes years) with no change at all. One thing it doesn't do is come and go without treatment.

My guess is that you have another tendon or muscle issue going on.

Sunshine, I agree with the above responses which are consistent with my experience suffering from DD. DD is, however, very unpredictable. Physicians who are hand or neurosurgeons, musculoskeletal and/or physical medicine and rehab specialists would be your best bets for an accurate diagnosis.

Update: I have today undergone my second round of Xiaflex injections which are 30 days apart. After the first injection it was decided that a second injection would be preferable prior to a manipulation or breaking of the contracted tendon. Please note the little and ring finger of my right hand are completely contracted even after a palmar fasciectomy. I would recommend looking at and/or trying all other options prior to this very invasive and often ineffective surgery.

A sales rep for Xiaflex attended the first injection and I was very appreciative of his input. The doctor is trained and has done this before but the rep did have some valuable insights such as "freezing" the area prior to the injections to reduce pain. The injections do hurt but it is the needle more than the drug. About one hour later the injected area began to throb a bit, probably a 4 or 5 on the pain scale, but the pain has since subsided. The Xiaflex rep said he had not encountered so advanced a case of DD. It took me a year and a half to get insurance and get the treatment approved. Tomorrow the "manipulation" will be done.

Xiaflex is now conducting additional clinical trials to get the FDA to allow the treatment of multiple fingers at once. I would prefer to go through this on both fingers at once.

I appreciate all of your input and will report back after the manipulation.

Callie,

Yes, sorry. I caught and meant to change that but the Vycodin must have kicked in. Thanks.

Marigail,

Thank you for the note. The Xiaflex treatment was partially successful. Not a lot of fun is it? We were able to pop a cord restricting the knuckle but not the cord restricting the PIP joint. Should I have to go to amputation I can keep the finger up to the PIP joint, which was my bottom line hope. I discussed your input on NA with my doctor and he agrees it is a logical next step. I will have Xiaflex treatment on the ring finger and NA on the little finger towards the end of March and we will go from there. Note to all: Please let me know your experience with NA. Is it painful? Do you use local anesthetic? Any other thoughts? Your input has been extremely helpful to me and I am very grateful.