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Personal experience
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06/05/2011 21:08
marigail 
06/05/2011 21:08
marigail 
Re: Personal experience

Hi Ann!!

I've got Dupuytren's in both hands, but my pinky on my left hand was contracted almost all the way so that my fingernail was touching the palm. My doctor suggested that I wait for the Xylaflex injection and try that. About two months ago, that is what I did. My finger has improved about 30% or so---enough that the doctor realized there was a second cord that had previously been hidden. This week I'll be having the second injection into that finger, and I'm hoping that will be all that I will need. My other hand, although there are nodules, has very little contraction, so for now nothing needs to be done. The reason I wanted to try the injection was because it was less invasive than surgery. You might want to ask you doctor about it.

    06/05/2011 21:40
    eastwind 
    06/05/2011 21:40
    eastwind 
    Re: Personal experience

    Thank you all for the above comments. Three weeks ago i had the Xiaflex proceedure on my right hand little finger. Not as bad as many of you indicated--about 30 degrees I would guess. Surprise- the Xiaflex representative was at the doctors office and photographed the total proceedure. Apparently my doctor is doing some kind of seminar on Dupuytrens In Washington DC area and they wanted photos. Previoulsy I had the NA on the finger next to it...cant say that is so good and dont think i wil do that again. The Xiaflex proceedure is too early to say... but I'll let you know. I will say the swelling and the reocery was abit better than expected..but damn those needles. Neither proceedure is a walk in the park and I frankly cant understand why radiation or laser isnt being used...but nobody wants to say, although I understand the Germans are using radiation. Given what I hear surgery is out unless its severe case.

    After seeing the Xiaflex rep --I'm more convinced nobody really knows and all of this needle stuff is cutting edge stuff, its only come to the front in the last year or so--- hopefully before I die they come up with something better - I'm 73 next week so they better hurry.
    Eastwind

      06/05/2011 23:30
      flojo 
      06/05/2011 23:30
      flojo 
      Re: Personal experience

      Radiation therapy/RT is being done in the US. I had it as have several others on this Forum. I suggest that you research all you can about the treatment options. There are other options besides surgery. There is a wealth of information right here on this website.
      At the top of this page, the tab on Treatment has info about radiation, Xiaflex and needle aponeurotomy/NA.

      I am 73. I've had NA then RT to avoid surgery. So far, I'm ahead of this disease, and I plan to stay ahead of it if possible. Surgery will be my last choice and I may never choose surgery.

      Come back with questions. You'll know a lot more after you read all about Dupuytren's on this site. There are links to other sites, lists of clinics that do the various treatment options.

      Flora

        06/05/2011 23:40
        marigail 
        06/05/2011 23:40
        marigail 
        Re: Personal experience

        I certainly concur about the wealth of information on this site. I learned so much about this from researching on this site and going to many of the links. Radiation therapy is not an option where I live right now---it is surgery or the injection. I will be honest and say that the injection for me was VERY painful, and I'm not looking forward to the second one this week. My doctor was very surprised---said most patients are only mildly bothered by it. The rupturing of the cord was not a problem at all. Splinting the finger at night was bothersome since I'm a terrible sleeper anyways, so I managed that by splinting during the day rather than at night. I also did the stretching a lot. Both of my hands are very disfigured because of this---at 64 I have the hands of a much older person, but they continue to be functional, and to me that's all that matters. I also hope to be able to stay ahead of it, and I am very proactive as far as researching, etc. I also think that everyone has "something," and if this is my "something," I can deal with it. I only wish that there were local folks around who I could talk with. With the HIPA laws of today, my doctor can't tell me anyone.
        Marilyn

          06/06/2011 03:08
          flojo 
          06/06/2011 03:08
          flojo 
          Re: Personal experience

          Quote:
          I also think that everyone has "something," and if this is my "something," I can deal with it.

          I agree. I'll take this as my "something". Fortunately for me, I haven't had what I'd even call pain - a little bit of ache.

          You had quite a contraction, so I'm thinking that's why Xiaflex was so painful. Please post what happens with your other treatments. It may be that Xiaflex will work best for one nodule/cord combination in my little finger. I'll be discussing that with Dr. Denkler in July when I get NA again. My contracture is only about 5-10 degrees but gradually getting worse.

            06/14/2011 22:22
            marigail 
            06/14/2011 22:22
            marigail 
            Re: Personal experience

            I had the second shot a week ago today. It didn't seem as painful as the first, but that could have been because I knew what to expect. That night I heard a pop, and I knew one of the tendons had let loose. YAY!!!! However, by the time I arrived at the doctor's office the next morning (18 hours post shot and about 10 hours post popping), the biggest blister I'd ever seen had formed on my pinky. It "exploded" during the manipulation (I had plenty of medication so felt nothing). Other than a mess, I now sported an open wound. I've been back to the doctor's office twice since to redress it, and now I'm on my own to do that for the next few weeks. The good news is it does seem like the pinky is straight, although it is so swollen and black and blue it's hard to know for sure. Below the second knuckle is all raw and open still, too. I go back in two weeks. In the meantime, I'm supposed to start moving it, which is hard to do because of the open wound, change the dressing daily and add the splint at night. I have to try to keep it dry, although the doctor said I could get it wet in the shower, but quite frankly it is so raw I hesitate to do that, and have been covering it. The doctor says this happens often (the blister and subsequent wound), and I know that to be so because of some of the postings I've read. I am hoping it will start to heal soon. I'm pleased at the apparent success, but a little worried because it is so difficult to stretch and straighten it right now.

            Marilyn

              07/09/2011 22:59
              EdK 
              07/09/2011 22:59
              EdK 
              Re: Personal experience

              I'm going for my first xiaflex injection on July 27th. I have a 90 degree contracture of my left ring finger. It's been getting progressively worse for about 4 years since I first noticed it. I had thought maybe I had arthritis, but my Dr. told me about Dupuytren's.

              If anyone thinks I'm not too far along for radiation to help, please let me know. It's not too late for me to cancel the injection. From the little I've read about radiation, my condition is too far along. Thanks!

                07/10/2011 07:36
                spanishbuddha 

                Administrator

                07/10/2011 07:36
                spanishbuddha 

                Administrator

                Re: Personal experience

                EdK:
                I'm going for my first xiaflex injection on July 27th. I have a 90 degree contracture of my left ring finger. It's been getting progressively worse for about 4 years since I first noticed it. I had thought maybe I had arthritis, but my Dr. told me about Dupuytren's.

                If anyone thinks I'm not too far along for radiation to help, please let me know. It's not too late for me to cancel the injection. From the little I've read about radiation, my condition is too far along. Thanks!

                Based on my own experience, your hand needs to flat so that it can be placed in position under the radiation probe. People have reported on here having radiation treatment after NA, not sure about Xiaflex, but once you have healed if the DD is still active it could be a possibility to consider. Best wishes for a successful treatment on 27th.

                  07/10/2011 12:21
                  marigail 
                  07/10/2011 12:21
                  marigail 
                  Re: Personal experience

                  I am now more than a month after my 2nd injection on my pinkie. The wound took a very long time to heal, and it still isn't completely there. My outer knuckle continues to be very bruised and I am splinting it at night. That being said, my finger is pretty straight--maybe 90% there. Not ever having any other treatment than the shot, I don't know how difficult the surgery is, although anything I've heard is that it is difficult and it has a long recuperation period. My doctor is thrilled with these results. I did ask him about radiation way back, and he just shook his head.....said my finger would not respond well to it. How long the finger will remain straight remains to be seen. My ring finger on one hand and the middle finger on the same hand as the aforementioned pinkie have started to contract. On the right hand it has stayed the same for about 10 years, while on the right hand I am seeing more contraction than awhile ago, but no place near where I would do anything about it. My hands look like I'm 85 years old, but they are functional and other than from the injection, there is no discomfort.

                  I hope you can find the help you need!

                    07/26/2011 14:09
                    cureall 
                    07/26/2011 14:09
                    cureall 
                    Re: Personal experience

                    Does anyone know anything about enzymes such as neprinol and dmso/vitamin e oil to spread on hand for helping D?
                    Thanks,
                    cureall

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