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Personal experience
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08/22/2010 06:46
wach 

Administrator

08/22/2010 06:46
wach 

Administrator

Personal experience

If you want to read a personal story about how it is having Dupuytren's, how a specific treatment 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

Edited 12/17/12 17:39

    08/23/2010 12:28
    David26

    not registered

    08/23/2010 12:28
    David26

    not registered

    Re: Personal experience

    I read those and found it interesting and helpful.

      01/14/2011 01:05
      trebor4321 
      01/14/2011 01:05
      trebor4321 
      Re: Personal experience

      Hi I hope im in the right thread,Ihave suffered from Dupuytren from my late 20s im 54 now ive lost two fingers one on each hand also had surgery on both hands on ring fingers and fore fingers,both hands are a mess two fingers at 45degrees one is set there with a pin,ring finger on my right hand is at 50deg, also i have this in my feet, i just want to give up now my hands will never be right and i just hope my feet don,t get worse,don,t want to go back to doctors anymore its not there fault i have a great doctor,ive just had enough, any advise would be welcome thanks Robert.

        01/14/2011 20:27
        spanishbuddha 

        Administrator

        01/14/2011 20:27
        spanishbuddha 

        Administrator

        Re: Personal experience

        Hi trebor

        Thanks for sharing.

        I too have lost one finger, not to DD, but now have DD so am not that pleased.

        I don't know all your details: is RT appropriate for your feet or is it too far advanced?

        Is Xiaflex a candidate for the hands? Not a cure but maybe something different to try than further surgery.

        There's lots of other experiences and suggestions elsewhere in these forum's but you would have to make your own mind up as to whether they are worth exploring further for you.

        Best wishes for the future.

          01/20/2011 18:55
          BFDeal 
          01/20/2011 18:55
          BFDeal 
          Re: Personal experience (NA)

          My Dupuytren's started about 12-14 years ago on the ring finger of my left hand. By the end of winter of 2010 it had a permanent bend of over 90° and restricted many of the things I wanted to do.

          Up until the spring of 2010 I was pretty much able to compensate for it by not putting things in my left pants pocket and using my right hand for what I had to do. I'm a golfer and skier and interestingly enough, Dupuytren's was not much of a hindrance in holding a ski pole and swinging a golf club. On the other hand (pun intended), last spring was the dealbreaker when it became difficult to put on and take off a golf glove 18 times a round and then when ski season started, stuffing my hand into a ski glove was so much a chore I didn't want to take the glove off for anything. Further, a very bent finger could not be moved as one needs to do to keep the hand warm. It was time for some action on my part.

          My family doctor had ID'ed my Dupuytren's late last century and at the time dismissed all solutions other than surgery as unproven. I've been keeping an eye on the Internet for alternative treatments and over the past few years I noticed that information on needle aponeurotomy took a real jump as a potential low-impact solution. I told my doctor (who embraces some alternative medicines but is a skeptic of many) and he asked that I see his hand surgeon, so I did.

          The hand surgeon examined my hand and described a number of treatments, saying that surgery was the preferred treatment, but that recently he'd been doing these "needle release" procedures with great success. I asked him how many he had done and he indicated about 25. Reporting this to my doc, he gave me the green light to go ahead and get it done.

          Here in Telluride, CO, at almost 9000' in the Rockies, most everything is far away. Jupiter, FL and the Bay Area were a bit far to travel but through the Dupuytren Society's website I found Dr. Ryan Grabow in Las Vegas, just a nine hour drive (not to mention the added benefits of lots of great things to do there). Not only did I find that he'd done over 1000 needle releases, but we were able to speak for two extended phone conversations which gave me great confidence in him.

          In the second week of January, off to LV I went, played a round of golf in 60° temps in the morning (kept my glove on the entire round) and was examined by Dr. Grabow that afternoon. His office has testimonials on the wall from golfers, baseball players and Paul Anka, thanking him for fixing their hands. The needle release procedure was scheduled the next day.

          The next day Jason, Dr. Grabow's assistant, got me ready and instilled further confidence by treating me like I was important to them, chatting intelligently and giving me lots of good info. Dr. Grabow came in, sterilized my hand and got to work. While the Eagles were on the sound system and the video full of synchronized colors played, Dr. Grabow numbed my hand and finished his work on it in about 30 minutes.

          Now I have to tell you that the procedure was painful and uncomfortable. The numbing shots hurt and the constant stretching of my finger while the cord was being cut was not a happy time. But it wasn't that bad. After, there were about six cuts on my hand along the cord, one a 1/6" hole. These were bandaged and the hand iced. Compared to surgery it was probably a breeze.

          (I cannot overemphasize how important ice is to the management of pain and discomfort. Not just in this case, but in many, many bumps and pulls of body tissue, ice applied to the injury makes all the difference in reducing pain and swelling. D-Oh!)

          A week later and all the pain is gone when I'm not putting any strain on the hand. All the cuts are pretty much healed and even the hole is closed up. It hurts when I try to do anything that stretches my hand backward but I am able to make a weak fist without pain. I've been wearing a brace at night to keep my hand straight and it's very stiff and painful until the hand gets warmed up to movement each morning.

          I probably have gained about 60° actual movement in the first joint of my finger but it's really the overall movement I have gained in the two affected joints that are making a difference. My hand is starting to work again like it is supposed to. I went skiing yesterday and am able to put on and remove my gloves with an ease I haven't had for two or more years. I can now reach our restricted light switches and hold a bar of soap in my left hand to wash.

          I plan to wear the brace for the next few months and work my hand to get as much movement as I can out of the affected joints. I've had to relearn how to type as I'd been compensating for my inability to reach certain letter on the keyboard, hitting the "3" for the "w" and the "w" for the "s," but that got fixed in a couple of days of typing with the new hand.

          It's not a miracle and not perfect, but I am very happy with my decision to get needle aponeurotomy and how it has turned out so far.

            01/20/2011 22:15
            spanishbuddha 

            Administrator

            01/20/2011 22:15
            spanishbuddha 

            Administrator

            Re: Personal experience

            Thanks for sharing BFDeal.

            BTW, I'm an iceman too for all sorts of knocks, bumps, scrapes, strains and so on. It also relieves aching pain from DD in the hand. My freezer has a drawer full of therapy ice-packs.

              01/21/2011 06:42
              LubaM. 
              01/21/2011 06:42
              LubaM. 
              Re: Personal experience

              BFDeal....

              Glad to hear the positive results of your recent NA procedure... hope your results are long lasting.
              My only advice to you would be to wear your brace at night for longer than just a few months...its possible that it would increase your chances for longer lasting results.

                01/22/2011 18:26
                marigail 
                01/22/2011 18:26
                marigail 
                Re: Personal experience

                I am scheduled for the injection on Feb. 1 and the stretching the following day. This will be the first or second time my doctor has done this---the office was just approved to offer the injection. I have read everything I can find on this procedure, and I must say it sounds more involvedl than my doctor has said. Although both hands are affected, the one I'm receiving the shot in is the pinkie finger on my left hand, which is VERY contracted---very close to 90 degrees. If you have any words of wisdom or know of anyplace else I can get some information, I'd be very appreciative.

                  01/23/2011 12:26
                  Calk 
                  01/23/2011 12:26
                  Calk 
                  Re: Personal experience

                  I have had Xiaflex in both pinky fingers. My left was 90 (2 injections), my right (1 injection) not quite as bad. I now have use of both fingers, and I can actually wear gloves again. I went to a doctor in Boston who participated in the clinical trails, so he had experience.
                  I have had the disease for 8 or nine years, and had decided to have the surgery. Right at that time Xiaflex was approved by the FDA, so I made that choice. No one in my area was trained to give the injections, so I went to Boston. I know this isn't perfect, but I feel like it is a miracle. I also know it can reoccur, but surgery is the same way. The FDA will only allow one injection at a time, 30 days apart.
                  Good luck to you. I met many other people going through the same thing, and I was amazed that most everyone experienced improvement. I do daily exercises, and wear night braces, but I feel like a human being again.

                    01/23/2011 12:56
                    marigail 
                    01/23/2011 12:56
                    marigail 
                    Re: Personal experience

                    I too was going to have the surgery, but my doctor encouraged me to wait to see if this would be an option. Of course, in that time the pinky has gotten considerably worse, so I was wondering if it could in fact work now with the injection. It sounds like it may. When you said you had two injections, do you mean at the same time, or did you go through the healing process and then had another whole procedure? From what you did say, I'm thinking you had to wait the 30 days to have the second injection. I am a bit of a coward when it comes to pain, but from what I have been reading and hearing, that has also been manageable.

                    Thank you so much for taking the time to answer me. I truly appreciate it and feel more confident now. I also have not been able to wear gloves---this is the second winter of that, so my winter activities have been limited to those where I can rely on mittens. I also currently do weight training twice a week (to keep fit only), and it looks like that may be sidelined for a little while......

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