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Worried about upcoming Xiaflex
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11/21/2014 10:35
Joew 
11/21/2014 10:35
Joew 
Worried about upcoming Xiaflex

Hello all, I've had DC for 25 years. Had two surgeries right hand. As usual it came back and the middle finger (the one I salute doctors with) is pulled down pretty far with a clearly visible cord in the middle of the palm. I went to local hand Doc who said she had done six of these. She said I was a good candidate since the cord is so visible and pronounced. She did mention it was "uncomfortable" to have the injections. I would say that's minimizing it based in what I've read in this forum.
Anyway, I've chosen to go thru with it as the surgeries are expensive, take a long time to heal , and in both cases it came back. I am now 64 years old. I'm concerned about two things, the people here for the most part, make it sound pretty darned excruciating to go through with. (Side note: I'm a chronic pain patient due to a failed spinal fusion and have been on pain meds for nine years,so don't talk about Ibuprofin, since OxyContin barely has any effect on me these days and I take it every eight hours ) the other concern is this doctor has only done six of these although she mentioned her cohort has done a few more...should I ask that HE do it instead ? I have so much scar tissue built up , and large nodules, I'm afraid it is going to be a tough customer . And now based on several failed medical procedures over the years that have left me with lifelong pain issues , I'm very skeptical when before I just trusted any Doctor with any procedure. I'm scheduled for this Monday and Tuesday...still debating on following thru or saying forget it , I've had enough pain. Any comments ?

11/21/2014 15:29
econn 
11/21/2014 15:29
econn 
Re: Worried about upcoming Xiaflex

It's tough to answer because everybody's pain threshold is different. I had Xiaflex procedure on my left hand 4 months ago and for me, it was highly successful. I would say the pain is about like a strong bee sting, not unbearable but certainly not pleasant, about a 5 on the 1-10 pain scale. Next day the cord snapping procedure was also uncomfortable while the block was being administered and the sound of that cord snapping was freaky! I didn't require any pain meds, although the doc wrote me a script for oxycontin which I never needed. I can now hyperextend my hand about 30+ degrees after years of 30+ contracture. Years ago I saw a hand surgeon and was on the verge of having it operated on but didn't like the the 4-6 months of rehab or the lack of certainty it wouldn't come back. I chose a plastic surgeon for my Xiaflex procedure, one who specializes in hands and has done all DC surgeries and NA as well as Xiaflex. I would think 6 successful procedures would be a good record for your doc and she has probably learned the proper techniques from her more experienced partner.

BTW, I am 70 years old, have had DC for over 30 years.....

Edited 11/21/14 17:31

11/21/2014 16:36
Joew 
11/21/2014 16:36
Joew 
Re: Worried about upcoming Xiaflex

Thank you for the response, very helpful. I can tell you having had two surgeries, and having it return , this must be much better. My hand now has scar tissue that will never go away, and my little finger never straightened. I will report back with the results of the handful of bees ! My plan is to just up my dose of pain meds for that day since I have built a seven year tolerance.

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