I am so sorry that you have had this awful result! Are you in a study? What is your history? any radiation?
I am new to this - diagnosed two weeks ago. Have had i year of progressives nodules now over past months cord an contracture in my thumb. you are right - it makes driving - pushing a grocery cart - anything difficult. and who said it is not painful!

I go next week for a hand surgeon consult. i hear he has been doing the collagenase. I am hesitant to get it because i have had a lymph node resection on that side. Now after your post I definitely will not get it.

What is your next course of action? Please keep us posted.
Marge

I did wear a splint. My finger was straight for a few months after the shot and then gradually got bent again. I just noticed the bulging cord a few weeks ago when it became very apparent and painful when I held the steering wheel. I know that many people have been helped with the injection, but just wanted to let you all know of my experience. I am considering the needle therapy, but am nervous about the pain. I don't know why they can't put you in a twilight sleep when they do it. It is getting exceedingly hard to wash my face - type with 8 fingers ( my other pinkie is bent) wash my hands and face (my pinkie always goes up my nose (LOL).

If any of you have had the needle therapy, please let me know - honestly - how painful it was. Thank you.
Sandi

Sandi,
I am so sorry you had such a bad experience with Xiaflex. You asked for honesty, so here it goes...

I have had Needle Aponeurotomy (NA) twice for the same small finger on my right hand. My first NA in July 2006 for a 45-50% contraction at the PIP joint of the small finger. The finger was totally straight after the NA, but the contraction returned after about 4 months. In March 2010, I had the NA re-done with a different doctor. By then I had developed a boutonniere deformity at the DIP joint where the tip of the finger bends upwards...so the finger looks like the letter Z in reverse. Again the finger was straight after NA, but the contraction returned to the original position.

I had therapy with a hand therapist both times and I used a night splint after both NA's ... perhaps not long enough. As far as painful it is really not bad at all and the great thing about NA is that the recovery is quick and it is not invasive. Also from my own experience and others on this Forum, there are no side effects from NA. The only problem, for me, is the recurrence issue and that is so individual.

I too have considered to try Xiaflex in the future, but I am still waiting for more reports on long term results and I am a bit hesitant because of some of the bad side effects I have read here.

Good luck to you and keep us posted.

LubaM.:

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Sandi,
I am so sorry you had such a bad experience with Xiaflex. You asked for honesty, so here it goes...

I have had Needle Aponeurotomy (NA) twice for the same small finger on my right hand. My first NA in July 2006 for a 45-50% contraction at the PIP joint of the small finger. The finger was totally straight after the NA, but the contraction returned after about 4 months. In March 2010, I had the NA re-done with a different doctor. By then I had developed a boutonniere deformity at the DIP joint where the tip of the finger bends upwards...so the finger looks like the letter Z in reverse. Again the finger was straight after NA, but the contraction returned to the original position.

I had therapy with a hand therapist both times and I used a night splint after both NA's ... perhaps not long enough. As far as painful it is really not bad at all and the great thing about NA is that the recovery is quick and it is not invasive. Also from my own experience and others on this Forum, there are no side effects from NA. The only problem, for me, is the recurrence issue and that is so individual.

I too have considered to try Xiaflex in the future, but I am still waiting for more reports on long term results and I am a bit hesitant because of some of the bad side effects I have read here.

Good luck to you and keep us posted.

sandrahelene Thank you for your kind words of encouragement. However, I can't see going through all of these procedures for a few months relief. Hopefully you and others have had better experiences than I have, but I have just about given up on treatments. I do live my life the best I can, I type (with 8 fingers - I used to type 90 words a minute) and I do creative projects - painting on my IPad, scrapbooking, cooking, etc. But, the discomfort is always with me. You all can well understand that. I wish you all well and peace in the world.