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09/10/2014 14:57
econn 
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09/10/2014 14:57
econn
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Re: Xiaflex Experience/NYC
I had Xiaflex on my left hand about 6 weeks ago and am extremely pleased with the results. The Healthwell foundation helped with a grant to defray both the cost of the prescription and the cost of the procedure. It is an uncomfortable procedure but I would do it again and may have to if the nodules on my right hand begin contracture. I wear a splint every night and will continue to do so for at least another 6 weeks. I can now extend my fingers about 20 degrees past open! And there is no pain other than when I stretch my fingers back, skin, muscles and tendons are not accustomed to being pulled that way after so many years of contracture. I believe the success and comfort of the procedure are highly dependant upon the skill of the dr. Do some homework on finding the right dr to do this if you decide it is for you. I would look for a hand specialist who is skilled in complete surgeries, NA and collaganase injections and can make a proper decision on what would be best for your situation.
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09/10/2014 16:14
MelioraDockery 
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09/10/2014 16:14
MelioraDockery
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Re: Xiaflex Experience/NYC
Thank you so much for your encouragement. It's amazing how much I have learned from this forum.
I have almost (99%) decided to go to the Dr. whose name comes up again and again: Dr. Raskin in NYC. Have you heard of him? He is on the board of trustees of the Dupuytren's Foundation and has many accolades to his name. http://www.keithraskinmd.com if you have time to look. My insurance won't cover me but at least I can get a consultation and go from there.
I'll also look into the grant you told me about. You never know!
Thanks again for your reply and if you have any more advice I'd love to hear it. It's good to hear that Xiaflex is working for you. I've been putting this off for so long with the foolish mantra that if I ignore it, it's not really there. Now it's time to face the Xiaflex!
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09/10/2014 20:26
econn
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09/10/2014 20:26
econn
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Re: Xiaflex Experience/NYC
I have not heard of him, but perhaps others have. I live in Oregon so I am only familiar with local practitioners. Does this particular dr perform surgery, NA and injections, and if so, how many successful procedures-esp Xiaflex-has he done? Those are some of the questions I asked the plastic surgeon hand specialist who did mine before deciding to go ahead with it.
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09/11/2014 04:44
mcd717 
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09/11/2014 04:44
mcd717
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Re: Xiaflex Experience/NYC
jtindell:
Tough question in terms of timing and it mostly comes down to medical input and your own gut sense. I could have waited longer but felt that I had a better shot now (with 45 degrees) and didn't want to impact lifestyle going forward. Obviously the data on xiaflex is still rather early. Btw, it feels great to type on a keyboard with a functioning pinky.
On cords, I did the one cord and suspect that separate injections may be required for multiple but I'm not the expert. On reforming, the data thus far seems to have a low recurrence rate. Finally, I sensed the breaking but it didn't feel like much and no pain. I have to admit to not looking--left that to the doctor and my wife. If anything, I was startled to see a straight finger. I don't know if there are indeed broken cords there or they were dissolved--I can't notice anything and it doesn't bother me.
Hope this helps.
The http://www.healthwellfoundation.org/diseases-and-medications will pay for Xiaflex if you meet their criteria. Someone else on the boards worked with them too. Sorry, I don't remember the name.
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