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Personal experience
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11/17/2012 01:39
Seph 
11/17/2012 01:39
Seph 

Re: Personal experience

I have had NA done twice. Both time relatively painless. Dr Badois explained that he only uses local anesthetic and I mean very very local (About 1/4 inch at a time) so that I can tell him if he touches a nerve. He said it would feel like an electric shock if he did.

Lots of small punctures that healed over very quickly. Dr Badois advised each time that I should keep the hand dry and clean for 3 days to eliminate any risk of infection. Also no heavy lifting for 10 days to avoid tendon damage.

On both occasions I could have used my hand within an hour or two but I chose to follow instructions and had no complications of any kind.

    11/18/2012 08:47
    rayozz 
    11/18/2012 08:47
    rayozz 
    Re: Personal experience

    I've been thinking about why I have this ailment, and have come up with a few ideas. Will add that I am a University Genetics graduate.

    1. I was a 20 year functional alcoholic, never took days off etc. (prime factor, I think)

    2. My father had Reynaud's Disease, a disease of hands and toes (genetic disposition)

    3. My auntie (Dad's sister), had bones removed from 1 finger and 3 toes. Going back to the early 1960's. I now assume that the bones were removed because she had some form of contracture. 50 years ago, what else would they do?

    I do remember going to the beach and watching my aunt wade in the water and watch her toes float like tentacles. Sort of humorous back then

    I seriously think that I was predisposed to the condition, and really helped it along with my drinking.

    Ray

      11/18/2012 10:14
      wach 

      Administrator

      11/18/2012 10:14
      wach 

      Administrator

      Re: Personal experience

      Hi Ray,

      welcome to our forum! My guess is that most Dupuytren's is caused genetically, maybe with the exception of some of the trauma related cases. Drinking alcohol isn't considered anymore a prime factor, at least not as long as it is not excessive and killing the liver (but then you have other problems anyway). Due to some Scandinavian studies alcohol was considered a contrbuting factor for a while but more recent genetic studies, analysing the biggest number of patients by far, did not reveal any influence of drinking. Diabetics might still be a contributing factor.

      Wolfgang

      rayozz:
      I've been thinking about why I have this ailment, and have come up with a few ideas. Will add that I am a University Genetics graduate.

      1. I was a 20 year functional alcoholic, never took days off etc. (prime factor, I think)

      2. My father had Reynaud's Disease, a disease of hands and toes (genetic disposition)

      3. My auntie (Dad's sister), had bones removed from 1 finger and 3 toes. Going back to the early 1960's. I now assume that the bones were removed because she had some form of contracture. 50 years ago, what else would they do?

      I do remember going to the beach and watching my aunt wade in the water and watch her toes float like tentacles. Sort of humorous back then

      I seriously think that I was predisposed to the condition, and really helped it along with my drinking.

      Ray

        11/18/2012 15:14
        marigail 
        11/18/2012 15:14
        marigail 
        Re: Personal experience

        Hi Ray, and welcome!!

        I don't fit the picture at all other than the fact that my Dupuytrens first was noticeable while recovering from a traumatic injury to my arm. It appeared in that hand 10+ years ago, but has not moved from the one nodule created. The other hand is a different story---it is affected a lot. I've researched to try to find any familial history---and have come up empty. Of course, some of my relatives died before the age I exhibited symptoms, so who knows if they may have......Originally, the doctor talked about it being predominately a disease men had---not a man. Both sides of my family are from Russia of old, and that may contribute somewhat, although not substantiated. 'Tis a mystery for sure.

          11/21/2012 00:17
          marigail 
          11/21/2012 00:17
          marigail 
          Re: Personal experience

          I am just back from a N/A procedure with Dr. Keith Raskin in NYC. I met with him on Monday, was examined and had the procedure on the hand that is less involved this morning. The other hand will be done----although it may have to be staged---in two weeks.

          I cannot believe the care, concern and wonderful surgical skill Dr. Raskin possesses. Being on this forum, I at least had a clue as to what to expect, but of course you really never know until you experience it yourself. The only thing that I felt was the novacaine shots going in, which felt like a bee sting. Dr. Raskin worked very methodically and tells you exactly what he is doing every step of the way. He did show me my hand a few times during the procedure, which took maybe 1/2 an hour. The prep took longer than that.

          My hand was bandaged with gauze, and I went to have a custom splint made immediately, which I will be wearing until Thanksgiving morning, and then at night. I have some stretches to do as well. My fingers are straight, and my joints will function again. I am so happy with this result and look forward to the time when my other hand shows the miraculous improvement !I saw today.

          Anyone who is considering this who might have any questions, feel free to contact me.

            12/08/2012 18:27
            marigail 
            12/08/2012 18:27
            marigail 
            Re: Personal experience

            Had second hand done this week. The NA seems to have been successful, but the joint in my pinky would not open, so I've had an open procedure to release that. That was much more involved than the NA. Stitches come out on the 13th, and I have my first OT appt. on the 11th. Keeping my now straightened first hand's fingers crossed.

              12/09/2012 05:56
              jamestmck 
              12/09/2012 05:56
              jamestmck 
              Re: Personal experience

              I am 34. 2 years ago after a series of very emotionally traumatic events I started noticing a bump on my palm. It is quite large now and is in both hands and in several locations. I have tried to make sure this is off my med records because I am afraid of being denied insurance, but have been diagnosed by several physicians. I am having a hard time, very emotional ..I have a daughter that is turning 2 and it is a bit depressing. I live in a very "natural healing" type of town and have been told there has been some success with myofascial release massage work. Has anyone had any experience with this route for early stages?

                12/09/2012 09:24
                spanishbuddha 

                Administrator

                12/09/2012 09:24
                spanishbuddha 

                Administrator

                Re: Personal experience

                jamestmck:
                I am 34. 2 years ago after a series of very emotionally traumatic events I started noticing a bump on my palm. It is quite large now and is in both hands and in several locations. I have tried to make sure this is off my med records because I am afraid of being denied insurance, but have been diagnosed by several physicians. I am having a hard time, very emotional ..I have a daughter that is turning 2 and it is a bit depressing. I live in a very "natural healing" type of town and have been told there has been some success with myofascial release massage work. Has anyone had any experience with this route for early stages?
                Myofascial release massage is mentioned, by marjorieb, in this thread http://www.dupuytren-online.info/Forum_E...sn-t-1_137.html

                  12/15/2012 06:33
                  Brian_PDX 
                  12/15/2012 06:33
                  Brian_PDX 
                  Re: Personal experience

                  I was diagnosed with Dupuytren's in 1994 and followed the best advice at the time. Delay surgery. Fast forward to today. I have had a failed palmar fasciectomy in the left hand in 2005 followed by an amputation of the little finger and part of the palm. In 2011 I had another palmar fasciectomy in the right hand, also a failure. I now suffer from severe contractions of the ring fingers of both hands and the little finger of the right hand (the only one left).

                  Seeking alternatives to being further carved up by supposedly well meaning surgeons, I discovered the option of Xiaflex. Being crippled by what I call "Polio of the hands" my ability to maintain medical insurance, work or gain employment has been nil. I am very successful at phone interviews but when the next step of an in person interview happens my inability to shake hands ends the chance for employment even though my mind (hopefully) works and my qualifications and experience are attractive.

                  I obtained Medicaid after a year of appeals, found a qualified physician to administer Xiaflex who also accepts Medicaid and was quite hopeful to get it done. Now the state of Washington, effective November 1, 2012, basically privatized Medicaid. The insurer I now have, Molina Healthcare, told me they would cover the procedure even prior to my being covered by them. Now their medical director has informed me Xiaflex is "unproven" and "not medically necessary" even though amputation of almost half my fingers and hands is the only alternative. I am appealing of course.

                  Perhaps someone here can give me some guidance, advice and hope. Thank you.

                    12/15/2012 08:54
                    spanishbuddha 

                    Administrator

                    12/15/2012 08:54
                    spanishbuddha 

                    Administrator

                    Re: Personal experience

                    Welcome to the forum Brian, sorry to hear your experience so far.

                    Sadly we do hear of more failures with surgery than other treatments, but it is difficult to say if this because it is inherently riskier or the surgeon didn't have in depth experience with DD and hand surgery. Probabaly a bit of both.

                    Your options are probably NA or Xiaflex, but just as for being treated surgically, you need to find a surgeon who has lots of experience with DD and also performing these treatments. Both of these treatments should improve your hand, but as you have experienced so far the chance of ongoing recurrence is high. Are there any of the listed risk factors within your control?

                    We seem to hear many stories of success with NA, with re-treatment if necessary every few years. Also with Xiaflex, although just like with surgery some people on here have tried it and won't do it again. Experience of the surgeon seems to be the key. If you can get your hands reasonably flat then RT as a preventive might be considered.

                    Where do you live? Other people here might then be able to suggest surgeons who have helped them that you can follow up with.

                    SB

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