zinkadoodle:

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Well, it's been almost 8 months since my participation in the multi cord Xiaflex study on my right hand. At first, I was thrilled with the results. The pain of the procedure was lousy, but doable, and I would do it again, if necessary and indicated. But here we are, almost 8 months out, and life isn't so good anymore. Immediately post Xiaflex, my contractures were reduced to 5-10 degrees on my ring finger PIP and 0 for my MCP. But, I made an appointment with the doctor because things aren't holding. Now, I'm at 25 degrees PIP and 15 degrees MCP, which in itself could indicate another round of Xiaflex. But, that's the least of my problems. Since the Xiaflex, I've developed a large and painful nodule in the center of my palm. My doc thinks that Xiaflex isn't called for because it would never fix that, and she won't do cortisone injection because she thinks it's not indicated, and won't work. Instead, she suggests that surgery would be my only option, and that maybe I should see the surgeon who operated on my left hand about 12 years ago. That was absolutely successful, and he was a great surgeon. To this day, my left hand is perfect.

So, I am going to give that surgeon a call tomorrow for a consult. My dilemma, of course, is do I live with this, because it's not really terrible at this moment given the bigger scheme of things, or undergo surgery. If I undergo surgery, it would be because waiting will only put off the inevitable, and surgery would straighten my hand as well as removing the nodule. Also, putting off surgery would mean that it would be getting worse, and therefore become a more complicated fix. Recovery from my left hand surgery was not a walk in the park. It was painful, tons and months of therapy and splints, etc. But, the results were great. This time, it would be severely compounded by the fact that 1) my hand is worse now than it was on my left hand 12 years ago, and 2) my right hand is my dominant hand.

I'm distressed. I know that there are no guarantees with surgery or with Xiaflex or anything. But, given that my biggest problem is the painful nodule, NA is not the answer. I'm not sure I'd undergo that anyway. But, the surgeon does NA, so no doubt we'll talk about it.

Anyway, that's the update and the scoop. Color me depressed...... ~~ Diane

I guess both of you know what I would do. I might try NA if I had a well pronounced cord with not much other tissue involved. But my first choice is surgery. Everyone is different, but having had great success with surgery, I would go with that. Some people heal differently and don't do well with surgery and I can understand them wanting a different procedure.

I think eventually there will be data showing that there are problems with Xiaflex that all of the promotion can't cover up. That is a guess on my part, but it just doesn't seem like the great thing that is advertised for long term success. It just seems logical that diseased tissue should be removed and Xiaflex certainly doesn't do that. It seems to be just a chemical form of NA.

Callie, I had great success with surgery, also, as I've already written about on numerous occasions. I just don't want to go through it again, because unlike you, recovery was kind of grueling for me. As a photographer, I'd have to put off any camera work for a number of months, likely, and that kind of kills me. I guess I could pick up my point and shoot, which is a little lightweight, but that camera makes me crazy. I need the big gun (Nikon D3s). Anyway, surgery is also not recommended until it becomes really the ONLY option, anymore, likely for good reason. But, given my success with it, and the failure of Xiaflex, I'm thinking it is my only option. Winter is the best time for me, because camera work is at a minimum. I'm a nature photographer who hates the cold. And, waiting for my hand to regress back to where it was before the Xiaflex, or worse, only means that there is less chance of restoring full function, as I understand it.

Wolfgang, it's too bad about the lack of comparative studies. Maybe, as time goes on, for how long is anyone's guess, there will be more data on Xiaflex. Seems to me, though, there should be that data already, and possibly it's the Xiaflex manufacturers who don't want to release it for obvious reasons. Are you keeping any tabs or running tallies from those who post here?

I'm calling the surgeon today. I'll keep you all posted. ~~ Diane

lorraine,

I don't buy into the "no pain, no gain" philosophy of therapy for this surgery recovery. I did my own therapy (90 degree contracture little finger) and never pushed it to any pain. I could tell when I pushed it too far in that there would be increased swelling. I concentrated on flexibility, movement and lubricated massage. My results couldn't have been better. After 12 years my finger is still zero degrees contracture and no sign of Dupuytren's.

I was golfing in 2 1/2 months which was kind of a turning point. It was my left little finger and palm (in the surgery) which takes quite a bit of pressure in a right handed golf swing. I had a wound from the base of my palm to the last joint (DIP) of my finger. I wore a nighttime splint during that time.