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02/03/2014 16:55
pia2some 
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02/03/2014 16:55
pia2some
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Dermofasciectomy?
Has anyone here had experience with a dermofasciectomy? If so, I would love to hear a report on how it went. I am just now researching and beginning to learn more about this surgery. It appears that it will be in my future in the next year or so. Any input would really be appreciated.
Thanks!
~ dawn
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02/03/2014 17:49
wach  Administrator
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02/03/2014 17:49
wach Administrator
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Re: Dermofasciectomy?
You might contact newman. He had several.
Wolfgang
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02/03/2014 18:02
pia2some
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02/03/2014 18:02
pia2some
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Re: Dermofasciectomy?
wach:
You might contact newman. He had several.
Wolfgang
Thank you. I just sent him a private message. Maybe he'll see that and have a chance to respond. I had surgery on my right hand in September and I had a flare like my surgeon has never seen. My hand is now much worse than prior to surgery. Pinky, ring and middle fingers are very contracted and nonfunctional. I still cannot form a fist. Now I have new cords pulling my index and thumb together. Once those fingers are completely drawn in, I'll have no use at all of my right hand. My surgeon feels the only other option is a dermofasciectomy. Even that is complicated because it really needs to involve all fingers. He won't do the surgery and would need to find someone with more experience.
My left hand is also having a lot of problems. But he feels we can do NA on it and hopefully have some success.
~ dawn
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02/04/2014 01:42
pia2some
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02/04/2014 01:42
pia2some
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Re: Dermofasciectomy?
I finally had time to search this forum and found quite a few older threads discussing dermofasciectomy. There's a lot of links to internet articles that will be helpful to read. I really hate the thought of going the route of this surgery, but given my horrible response to the last surgery, I'm not sure we have any other options.
My surgeon does feel confident that he'll be able to treat my other hand (left hand) with NA since it's much less complicated and should be a simple fix. We shall see!
~ dawn
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02/04/2014 07:01
wach Administrator
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02/04/2014 07:01
wach Administrator
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Re: Dermofasciectomy?
I had a heavy flare after surgery myself. Within a couple of months I had six new and quckly growing nodules, three in each hand. I had them irradiated and that, thank god, stopped them.
Another surgery might trigger new nodules. Newman can tell stories about that. I believe he had 15 or more surgeries before he embarked on RT and NA.
Would it be an option having NA and wearing a night splint afterwards? Silicon night splints sometimes seem to further reduce the contracture.
Wishing you all the best
Wolfgang
pia2some:
... I had surgery on my right hand in September and I had a flare like my surgeon has never seen. My hand is now much worse than prior to surgery. Pinky, ring and middle fingers are very contracted and nonfunctional. I still cannot form a fist. Now I have new cords pulling my index and thumb together. Once those fingers are completely drawn in, I'll have no use at all of my right hand. My surgeon feels the only other option is a dermofasciectomy. Even that is complicated because it really needs to involve all fingers. He won't do the surgery and would need to find someone with more experience.
My left hand is also having a lot of problems. But he feels we can do NA on it and hopefully have some success.
~ dawn
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02/04/2014 15:10
pia2some
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02/04/2014 15:10
pia2some
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Re: Dermofasciectomy?
wach:
I had a heavy flare after surgery myself. Within a couple of months I had six new and quckly growing nodules, three in each hand. I had them irradiated and that, thank god, stopped them.
Another surgery might trigger new nodules. Newman can tell stories about that. I believe he had 15 or more surgeries before he embarked on RT and NA.
Would it be an option having NA and wearing a night splint afterwards? Silicon night splints sometimes seem to further reduce the contracture.
Wishing you all the best
Wolfgang
pia2some:
... I had surgery on my right hand in September and I had a flare like my surgeon has never seen. My hand is now much worse than prior to surgery. Pinky, ring and middle fingers are very contracted and nonfunctional. I still cannot form a fist. Now I have new cords pulling my index and thumb together. Once those fingers are completely drawn in, I'll have no use at all of my right hand. My surgeon feels the only other option is a dermofasciectomy. Even that is complicated because it really needs to involve all fingers. He won't do the surgery and would need to find someone with more experience.
My left hand is also having a lot of problems. But he feels we can do NA on it and hopefully have some success.
~ dawn
I had Xiaflex in my right hand almost three years ago. It helped for about six months. Over a year ago I had silicone splints made for each hand. Full extension splints. I wore those on both hands every night until my surgery in September. Then I had a partial fasciectomy that involved my palm, pinky and middle finger on my right hand. They were contracting downward as well as being pulled sideways. My middle finger was stuck under my ring finger. My surgeon does lots of NAs but was not able to consider NA for the mess of my right hand. I had the surgery and within six weeks was in a major flare. I was in OT twice a week until the end of December. During this time my pinky, ring and middle fingers contracted weekly. Now my pinky is at almost to my palm. The other two fingers are quickly following. Some of the scars have also developed keloid scarring.
The surgeon has had me on prednisone to try and reduce my body's immune reaction but it's not helped. I'm weaning off of that now. I can no longer wear the splint on my right hand. My fingers are way too curled to do that.
During this time, I've developed full blown cords (3 of them) between the thumb and the index finger. One is in the webbing.
The situation as of right now is that I do not have use of my pinky, ring and middle finger. I can use my index and thumb, but they are quickly pulling in toward one another. Once the index and thumb become too contracted to be fully functional, that right hand is going to be pretty useless. At that point, I will have to decide if I want to pursue another surgery. The only surgical option would be the dermofasciectomy. My surgeon has consulted with other DC hand surgeons who are agreeing with this assessment. One idea is to do the dermofasciectomy and follow that with radiation to prevent the scarring like i had after the last surgery. The hand is too involved for radiation treatment at this point.
Does all of that make sense? lol
~ dawn
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02/08/2014 14:10
pia2some
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02/08/2014 14:10
pia2some
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Re: Dermofasciectomy?
Thanks, Wach. I was able to message with Newman and hear his experience with this surgery. this is definitely something I need to really think through before deciding on. Hopefully, my DC will cooperate and slow down the disease's progression so I don't have to decide soon.
For now, I'm learning to do a lot of daily tasks using my left hand. My left hand has several fingers contracted but I'm still able to use it.
~ dawn
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