| had great experience with xiaflex procedure so far |
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09/11/2013 19:40
moondanc 
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09/11/2013 19:40
moondanc
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Re: had great experience with xiaflex procedure so far
davidw:
In fact, this is how i see my dupuytrens developed. i built my own stone house and cut every cotswold stone and tile over five years. the nodules started in my left hand and gradually contracted ...with multiple nodules now appearing, in feet and also in other personal areas..which is a worry! So, to operate or not, that is the question? Or do nothing? Any advice please.
davidw
My DD appeared over 25 years ago when I was in my early 40s. It happened somewhat the same way you describe. I was using a chisel to remove ceramic tiles. It started in the palm of my right hand where the chisel had dug into it. It only affected my ring finger and progressed very slowly over those 25 years. I didn't have my first NA until 2005.
Since that time, however, it has started to really progress very rapidly. However, the only place I have DD is in my hands. I believe I was always going to get the disease but injuring my hand accelerated the process and I got it early.
Since you have both LD and Peyronies this may or may not be the case for you. If I were you I would take a wait and see attitude about the disease in my hands or perhaps proceed to NA if it gets bad enough. Don't mess around with Xiaflex unless you absolutely have to.
I spoke with Dr. Gary Pess yesterday about Xiaflex and he adamantly dismisses the possibility of Xiaflex making the disease more aggressive. I am going to wait for the studies.
Dr. Pess did my left hand today using NA. Tomorrow he will do my right hand.
Diane
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09/11/2013 21:42
pia2some
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09/11/2013 21:42
pia2some
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Re: had great experience with xiaflex procedure so far
Diane,
How did your NA go? How many fingers/cords did you have done this week?
~ dawn
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09/11/2013 21:56
davidw 
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09/11/2013 21:56
davidw
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Re: had great experience with xiaflex procedure so far
Diane quoted:
Since you have both LD and Peyronies this may or may not be the case for you. If I were you I would take a wait and see attitude about the disease in my hands or perhaps proceed to NA if it gets bad enough. Don't mess around with Xiaflex unless you absolutely have to.
I spoke with Dr. Gary Pess yesterday about Xiaflex and he adamantly dismisses the possibility of Xiaflex making the disease more aggressive. I am going to wait for the studies.
Dr. Pess did my left hand today using NA. Tomorrow he will do my right hand.
Diane
Hi Diane
I'm glad to say its not me with LD and IPP, it is my friend ,if you reread wot i said. However, thanks for yr comments, & why do you say, don't mess around with Xiaflex.. but then say Dr Pess says Xiaflex won't make it more aggressive..that's got isn't it?!
Good luck with yr NA tomorrow on yr Right hand. Keep us informed..even pictures, before and after etc.
Thanks again and good luck again..
Davidw
Edited 09/12/13 00:59
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09/12/2013 01:04
moondanc
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09/12/2013 01:04
moondanc
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Re: had great experience with xiaflex procedure so far
davidw:
I spoke with Dr. Gary Pess yesterday about Xiaflex and he adamantly dismisses the possibility of Xiaflex making the disease more aggressive. I am going to wait for the studies.
Dr. Pess did my left hand today using NA. Tomorrow he will do my right hand.
Diane
Hi Diane
I'm glad to say its not me with LD and IPP, it is my friend ,if you reread wot i said. However, thanks for yr comments, & why do you say, don't mess around with Xiaflex.. but then say Dr Pess says Xiaflex won't make it more aggressive..that's got isn't it?!
Good luck with yr NA tomorrow on yr Right hand. Keep us informed..even pictures, before and after etc.
Thanks again and good luck again..
Davidw
I had very non-aggressive disease for 25 years, just one finger one hand . I had my first and NA in 2005. I then had Xiaflex in 2007 in the FDA trials. After that my disease took off like wildfire. Now eight fingers, two thumbs. I know more than half a dozen people who think it did make their disease more aggressive. I am waiting for the studies. It's only been used three years or so. Sorry about the mistake in my earlier post. I am on Percocet.
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09/12/2013 01:29
moondanc
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09/12/2013 01:29
moondanc
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Re: had great experience with xiaflex procedure so far
pia2some:
Diane,
How did your NA go? How many fingers/cords did you have done this week?
~ dawn
Two fingers, three cords. Hurt like hell even with twilight sleep. Because one of the fingers was index finger and apparently lots of nerves there I didn't get a lot of anesthesia. Didn't feel a lot better to me then a local. Hurt so much after I had to have a Percocet. Have a couple very small skin tears as opposed to needle holes. It's not the technique , however, ( he does NOT use the California technique -"tear the sh*t out of them" )- it's because he needed to be more aggressive. His technique is similar to Dr. Eaton's.
I'm using wine and Vicodin right now so I'm not feeling too bad :-) . Today was my left hand and I'm right handed. Not looking forward to tomorrow as my PIP joint does not have a palpable cord so it will be a lot harder. They have promised me more anesthesia. Much faster pace here in New Jersey then I experienced down in Jupiter, Florida but Dr. Pess is an excellent surgeon; he even had a patient from Europe today. Gotta go eat some chocolate before I start fasting at midnight!
Diane
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09/12/2013 01:51
pia2some
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09/12/2013 01:51
pia2some
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Re: had great experience with xiaflex procedure so far
Wine and Vicoden. Sounds like a good way to relax and numb those hands. It does sound rather painful. Why twilight and not a general? Are you going to be able to do much with both of your hands recovering? I would assume that for a couple of days, your hands are going to be rather painful. Good luck tomorrow. I hope they give you more sedative so you have less pain during the procedures.
~ dawn
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09/12/2013 09:25
davidw
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09/12/2013 09:25
davidw
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Re: had great experience with xiaflex procedure so far
Gosh Diane, sounds like Dupuytrens has really taken over yr life for the moment! I do hope yr NA goes well for you and sorts out yr precious hands. That's the first I've heard that using Xiaflex can make matters much worse. And its my concern on any of the treatments apart from open hand surgery..where they can be even worse problems, like damaging yr nerves etc. But I do get the feeling that Dupuytrens goes in dormant and active phases..and you can see that by the contractions of the fingers, cords, nodules. And if you have any treatment during these phases..it can kick off anywhere, making matters much worse and compounding the problem. This is one of the reasons I'm fearful of doing anything. I notice when I do physical work with my hands, it hurts if i knock or stretch the bent fingers too much, for a few days ..then is OK again. So I just tell my wife I can't do any more work! Like chopping the wood, chainsawing, hoeing the veg plot etc !! Just sit down and read the paper instead, and drink beer to keep head, body and fingers all calm and dormant! Biggest disadvantage other than that is swimming , which i do every day for half and hour. With the bent fingers, the hands aren't the efficient paddles they should be ..so i lose speed on that!! So all in all, can't complain, but I would if it spread to eight fingers..I would be devastated.
So really, Diane, good luck with yr treatment.
Davidw
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