Very interesting. And, what I found particularly interesting was the slide that compared fasciectomy, needle release (NA), and collagenase (Xiaflex). I participated in a multi cord Xiaflex study this past March, 2013. It was great. After the pain subsided, my MP was reduced to 0 degrees from 25, and my PIP was reduced from 40 to about 10 degrees. I was happy, albeit a bit disappointed about the remaining contracture of 10 degrees in my PIP.

However, since then, I've lost that gain, and am now at about 30 degrees in my PIP and 15 degrees in my MP. My doc couldn't give a rat's ass, because her only interest was whether there was any toxicity from the double dose of Xiaflex, not in whether it was successful or not. In fact, she told me before I underwent the Xiaflex treatment that she would never recommend NA because of the recurrence rate. Here I am, 9 months out, and recurrence occurred to almost 100% of what it was, and continues to progress. And, that slide of Dr. Eaton's basically reaffirmed my own experience - that the data shows that Xiaflex may end up having the highest recurrence rate of the three modalities. Very interesting.

And, to make matters worse, I now have, which I didn't before, a large, painful nodule in the center of my palm, which was really why I went to see her again in the first place. Did the Xiaflex cause that? Would I have developed that anyway? My doc even suggested that it may be a cyst, rather than a nodule, but she was not specific, didn't care, told me that Xiaflex was no longer an option, and to see the surgeon who operated very successfully on my left hand. Then, just walked out of the examining room. Talk about getting kicked to the curb!!!

I did try the Xiaflex because I was hoping to avoid surgery, even though my left hand is still great after 12 years. The recovery was not easy, and my right hand is my dominant hand. I do know that Xiaflex is not going to fix my nodule (cyst?). I also know that Xiaflex has worked so well for some of you, and abysmally for others. For me, it was just a failure, but I am glad I tried it. So, off to see a different surgeon (my previous surgeon no longer takes my insurance) on Dec. 4th for a second opinion/consult. Whether we go NA, surgery, or nothing right now is yet to be determined. But, I am done with Xiaflex.

~~ Diane