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Personal experience
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07/31/2012 06:20
GaryBall 
07/31/2012 06:20
GaryBall 
Re: Personal experience

Fair play seph,

I had the same thought with my RT in NZ.......it was available here......but I ended up in hamburg......I suspect your thought process is similar to mine......get it done right first time with the experienced practitioners......

I have no regrets.....

Good luck to you...

    07/31/2012 18:09
    flojo 
    07/31/2012 18:09
    flojo 
    Re: Personal experience

    When waiting too long with too much contracture, there are the skin splits, sometimes grafting needed, etc. I have not waited and don't intend to wait for very much contracture to occur. When mine contracts to about 20 degrees, I'm at Dr. Denkler's office, spend 30 minuted, see their standard white poodle, the ladies in the front office and their babies, and I'm on my way.

    Dr. Denkler near San Francisco is aggressive in using NA on contracture that is quite severe. You can email pictures to him and he'll email you back. Get his opinion even if you won't be able to use him. He's passionate about helping people with Dupuytren's and I know he will be happy to look at your pics and reply.

    You can come to California to see him. His charges for me were about $600 for about 6-8 needle releases. He'll do more than one release on one cord depending on how far reaching the cord it. Look at his website. It's in the list in the treatment menu.

    Whatever and where you have your NA done, see if you can get a prescription for a night splint. I went 2 1/2 years between NA treatments and had my last one a year ago. I did not have a night splint the first time, but I've used one for the past 11 months now. I feel confident my night splint use will push my need for NA out at least one additional year and I'm hoping 3 more years.

    I you have more questions, post them or message me.

    Good luck!

    Flora

      08/20/2012 13:19
      gjames 
      08/20/2012 13:19
      gjames 
      Re: Personal experience

      wach:
      If you want to read a personal story about how it is having Dupuytren's, how a specific tretament helped or didn't, how to find the right doctor, then you might have a look also at our page on "personal experiences". Here patients tell their stories with a little more details than in the forum. You find this page on the menu on the left side or at http://www.dupuytren-online.info/dupuytr...xperiences.html.

      Wolfgang

      Watch this one also:

      http://m.katv.com/default.aspx?pid=2705&...type%3drssstory

        08/31/2012 17:17
        wach 

        Administrator

        08/31/2012 17:17
        wach 

        Administrator

        Re: Personal experience

        Quite a few new and interesting stories with personal experiences about living with Dupuytren's are on

        http://www.dupuytren-online.info/dupuytr...xperiences.html

        They cover a lot and are sure worth reading!


        Wolfgang

          09/22/2012 17:11
          Putzo 
          09/22/2012 17:11
          Putzo 
          Re: Personal experience

          Tried realease on left pinky finger last October...came back worse...Doctor said surgery was necessary and that I would have to be put out during surgery. This did not sit well with me so I searched for other doctors in the Toronto area that perform the surgery.

          DR Tang who is a plastic Surgeon who specializes in hands was on the list. I met with her and immediatley felt comfortable, she took the time to explain in detail every step before during and after surgery. She also said t6hey could perform a Bier Block, which means I did not have to be put under.

          Basically they froze my arm, and clamped at the upper muscle and performed the surgery. I was awake all along and was informmed by the doctor at every step of proceedure. I arrived at hospital at 10 AM and was taken right away to pre op. They then took me to prep room where the the proceedure to block was performed.

          A ultrasound was used to find the nerve that blocks my arm. A needle was inserted and freezing applied. once freezing was in place They then proceeded to wrap from my hand up in elastic band to remove the blood from arm. At that point a "clamp" was put around my arm and tightened. The elastic was removed...and off to operating room.

          The wierdest part was, as my arm was frozen in an upright position, through-out the entire proceedure my mind was telling me the arm was still raised.

          Anyway, I chose not to watch and was drapped. What ever she was doing it took about 30 minutes at which time she said alll went well.

          I was taken to recovery, where the doctor gave me instructions that I must...starting immediatley close my fingers and hold to make sure I dont lose movement, and to continually do this, either use it or lose it, and that she will see me in 2 weeks.

          As I had not taken any anethetics or sedatives I was immediatley released form hospital.

          The arm regained full feeling in about 2 hours, but the hand was still frozen for about 4 more. I went to bed at about 11pm with the pinky feeling frozen.

          Next morning Hand, Pinky were not frozen but Pinky was tingly, I could move somewhat to closed fist but did have to force all the way where it should have been,,, releasing of fist did hurt as if it had not been done in a long time.

          It is now 4 days since surgery, my finger is straight, still abit tingly but better every day.

          I ride a Motorcycle and I believe that by tomorrow it will be applicable to do so

          In all the stress I went through prior to surgery was unwarranted as the whole proceedure was not that bad

          Edited 09/22/12 20:14

            09/22/2012 17:28
            marigail 
            09/22/2012 17:28
            marigail 
            Re: Personal experience

            Thanks so much for sharing your story, Putzo. I am delighted that this block seems to be your answer---Yay!!! Since I posted last time I have taken the advice of many and have looked into NA. My doctor here said that surgery was the only remaining option, and I was not very happy. Using the list provided through one of the members on this list, I found a Dr. Raskin in NYC who does the NA procedure. I was able to send pictures, my history, etc. to him, and I have an appointment in early November. From the pictures, he thinks the NA may do the trick. However, since my pinky is extremely contracted, and I may need some kind of surgical procedure, that according to the person I spoke with is practically non-invasive. I'm wondering if it might be the block you are describing. I seem to be able to "feel" the cord all the way up the side of my arm. I am feeling much better about this whole situation since reading your post. I had two xylaflex injections and the Dupytren's came back worse than it was before.

            Keep us posted on your progress!!
            marigail

              09/22/2012 17:53
              Putzo 
              09/22/2012 17:53
              Putzo 
              Re: Personal experience

              Xiaflex is just released in Canada, and as doctor said you want to be first? Don’t think so... My duprytens was extensive in left hand and is also in right...later down the road for this.

              I was really scared of being put under so the block was an welcome option.

              But I am surprised 4 days later of the use I have already, and each day it is better...ask about the block as doctors have been doing this since the 1800's and they all know about it...it is used on kids as an alternative

              Good luck, and I am sure whatever you do you will realize after the stress was not warranted

              Putzo

                09/23/2012 11:02
                marigail 
                09/23/2012 11:02
                marigail 
                Re: Personal experience

                It is very encouraging to learn of your success. I am trying hard not to stress over this because from all accounts this doctor I'm seeing is excellent. I'll be glad to be able to use my left hand more efficiently again!
                marigail

                  09/23/2012 15:28
                  Putzo 
                  09/23/2012 15:28
                  Putzo 
                  Re: Personal experience

                  marigail:
                  It is very encouraging to learn of your success. I am trying hard not to stress over this because from all accounts this doctor I'm seeing is excellent. I'll be glad to be able to use my left hand more efficiently again!
                  marigail


                  Believe me, The stress you are experiencing is normal, I was a basket case until about 3 days before my surgery I was at a party, and a friend that was having her Breast removed day after me was also there. She was handling her problem better then I was. I thought wow hers is alot worse then what I am going through, It kind of calmed me to a point that I accepted this as minor compared to other peoples problems.

                  If this is the worst thing I ever have to go through I will be lucky there are a lot of worse situations that we could be faced with

                  Day 5 and stiffness in pinky a little less Have to force bending of finger to make a complete fist. Bruising in palm is visble but not bad.

                  Finger still has tingling but livable I have only been taking Tylenol extra strength since surgery, (they did prescribe T3) but tylenol ex seems to work well- take about 6 a day at 4 hour intervals

                    09/23/2012 18:52
                    moondanc 
                    09/23/2012 18:52
                    moondanc 
                    Re: Personal experience

                    flojo:

                    Whatever and where you have your NA done, see if you can get a prescription for a night splint. I went 2 1/2 years between NA treatments and had my last one a year ago. I did not have a night splint the first time, but I've used one for the past 11 months now. I feel confident my night splint use will push my need for NA out at least one additional year and I'm hoping 3 more years.

                    Flora

                    Flojo--thanks for being such a great advocate for splints. I have a bunch of other medical problems (getting hip replaced in 2 days) and have trouble sleeping so have stopped wearing my splint--covers two fingers on RH but I'm in need of one for two fingers of my LH also. My questions are:
                    1) how many fingers does your splint cover (or how many fingers are being splinted)
                    2) Do you have just one or one for each hand?

                    Diane

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