| Lost password
418 users onlineYou are not loggend in.  Login
Personal experience
 1 2 3 4 5 6 .. 29 .. 51
 1 2 3 4 5 6 .. 29 .. 51
07/26/2011 14:17
wach 

Administrator

07/26/2011 14:17
wach 

Administrator

Re: Personal experience

You can search the forum ("search forum" on the left menu) for according posts. I don't think that any of those will help much, although there were some positive reports on DMSO.

Wolfgang

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

    07/28/2011 23:03
    EdK 
    07/28/2011 23:03
    EdK 
    Re: Personal experience

    I had my first Xiaflex injection yesterday on my left ring finger, which was up to a 95 degree contracture. My Dr. divided up the Xiaflex into roughly 3 equal injections at 3 points in the cord. The injections weren't very painful, but the Dr. warned me that the manipulation would be the painful part, the next day. He wrapped the injected finger in gauze, and then wrapped my left hand in an ace bandage. He said the bandage was mostly just to remind myself not to use my hand as the enzyme sat in my finger overnight.

    I didn't unwrap my hand at all last night to look at the injected finger. The worst pain I felt last night was kind of like a wasp bite. It was a combination of a stinging sensation and an annoying itchiness, but it would come and go, and never lasted more than 5 minutes at a time. I slept very well and never woke up in the middle of the night in pain.

    This morning I went back to the Dr. for the manipulation. He injected my wrist in 2 spots with a local, then he came back in 10 minutes as the local had taken effect. He brought a fellow hand surgeon in the room, which turned out to be a blessing for me. The other hand surgeon asked me about my condition, and as I was telling him how I discovered my condition 5 years ago, my Dr. proceeded with the manipulation. So, getting to concentrate on what I was saying rather than completely focusing on what my Dr. was doing to my finger helped immensely.

    My Dr. slowly but firmly pulled on my left ring finger, and within seconds there was a subtle but definite snap of the cord. He pulled a little bit more and there were two more snaps, but not as big as the first one. He was immediately impressed with the straightening of my finger. He was also glad there was no tearing of the skin on the palm side of that finger, since it had been contracted so much and for so long. Surprisingly, the pain of the manipulation was nothing compared with what I had expected. The local anesthetic and the distraction of talking to the other Dr. helped greatly.

    Then it was off to the physical therapist for my splint. The local anesthetic was still doing its job, so it wasn't very painful while getting the splint made for my finger. I kept this splint on for the 45 minute ride home (my wife drove so that I could take a pain killer), then took it off once we got home. That's when the real pain started. At first, it was hard to make a fist again. There's a lot of swelling at the point of the Xiaflex injections, and where the cord had snapped. After about 10 minutes, it became easier to make a fist, and now even typing isn't too bad--I'm using all 10 fingers again to type. I did put the splint on again this afternoon, just to see how easy it is to do. Ouch, painful! Then I took it off, and the same thing happened--10 minutes of pain and stiffness, and now a lot more flexibility and less pain.

    It's still the same day as the manipulation, but so far so good, and I'm very hopeful the recovery won't take too long. It's that darn splint that worries me though!

      07/29/2011 01:17
      marigail 
      07/29/2011 01:17
      marigail 
      Re: Personal experience

      You are doing marvelously!! I'm about 7 weeks post shot number 2 in my pinky. The first shot caused no tearing, but the contracture didn't improve too much. A second cord was evidenced once the first shot allowed some opening of the finger. The second shot did cause a skin tear and we were dealing with wound care for about 5 weeks. I've got about 85% straightness now--same as the day the cord was ruptured, but the discomfort is palpable even after all this time. It feels like there are blisters under the skin, and there are times that even the least little bit of contact with the area causes a great deal of pain. At yesterday's appt. he was surprised at this---said he'd never heard of a reaction like it. I can type and use the finger pretty well---the discomfort is on the palm side from the knuckle to the palm and over into the "webbing" between the two fingers. I can bend the finger and touch my palm with the inside of the fingertip, despite the fact that the outer knuckle still is quite swollen. I've been given Voltaren, an anti-inflamatory cream to use for the next month or so when I have to go back to have it checked. The doctor says it doesn't act like nerve pain.....so who knows what this is. To hear that you have had minimal pain, the finger is already working, is wonderful. I expect this will improve even more as time goes on.

      Anyone out there have any problems such as I described above?

        08/18/2011 21:46
        vanceSF 
        08/18/2011 21:46
        vanceSF 
        Xiaflex, 11 months later

        11 months ago I had the Xiaflex treatment on my left small finger. As you can see from the attached before/after pic, at two weeks out it was looking really good.

        Unfortunately, the contracture came back 5 months later. Now, I'm starting to get some pain in the palm and will be going back to the doctor next week.

        I knew that it was a new proceedure and there was a good chance of recurrance. In my case it came back with a vengence. I was thinking that maybe every 5 years, I'd need treatment. However, I'm certainly not going to make an annual thing of Xiaflex.

        Feel free to contact me.

        Vance

        Edited 08/19/11 01:12

        Attachment
        xiaflex1.jpg xiaflex1.jpg (55x)

        Mime-Type: image/jpeg, 11 kB

        WP_000149.jpg WP_000149.jpg (42x)

        Mime-Type: image/jpeg, 21 kB

          08/18/2011 22:02
          marigail 
          08/18/2011 22:02
          marigail 
          Re: Personal experience

          Oh Vance, I am so sorry to learn about the recurrence in your pinkie!! I also have had two xylaflex shots in my left pinkie and it's about 85% straight. The second shot was early in June and it is still extremely painful and tender --it feel "tight" all the time. The upside is I can type and do some other things that I haven't been able to do pre-injection. Although I hope it will stay where it is, from what I've been reading, etc., that seems to be rather unlikely. I don't think I'd go this route again, though, but with a lapse of time I might think differently. Do keep us posted as to what the doctor says.

            08/18/2011 23:10
            BFDeal 
            08/18/2011 23:10
            BFDeal 
            Re: Personal experience

            This is a seven month report after needle release on the ring finger of my left hand. For the report immediately after the procedure see earlier post from 1/20/11 on the first page of this thread.

            Things are good with my hand. I used the brace off and (mostly) on for the first couple of months but not since. I do however spend a few times each day stretching my finger separately and flattening my palm and fingers together. I often do this while reading and on the steering wheel while driving. I'm doing it now while I collect my thoughts.

            Each day I think (fear?) I can feel a tightening of the cord and some days the finger is stiffer and harder to straighten than others, but I think it's remaining pretty much the same over the last six months. The healing from the NR procedure was 95% complete the first month and although tender, the finger was strong and flexible as much as I needed. Golf, skiing, typing, bike riding, getting to that hard-to-reach light switch, rubbing my wife's back, etc. have now returned to my regular agenda with more comfort than in many years. This stability is good.

            I still suspect that this will be a five or ten year fix and that I'll have to do it again, but heck, ten years ago the only fix was major finger surgery. Who knows what will be available in five years hence?

              08/19/2011 14:41
              spanishbuddha 

              Administrator

              08/19/2011 14:41
              spanishbuddha 

              Administrator

              Re: Personal experience

              BFDeal:
              This is a seven month report after needle release on the ring finger of my left hand. For the report immediately after the procedure see earlier post from 1/20/11 on the first page of this thread.

              Things are good with my hand. I used the brace off and (mostly) on for the first couple of months but not since. I do however spend a few times each day stretching my finger separately and flattening my palm and fingers together. I often do this while reading and on the steering wheel while driving. I'm doing it now while I collect my thoughts.

              Each day I think (fear?) I can feel a tightening of the cord and some days the finger is stiffer and harder to straighten than others, but I think it's remaining pretty much the same over the last six months. The healing from the NR procedure was 95% complete the first month and although tender, the finger was strong and flexible as much as I needed. Golf, skiing, typing, bike riding, getting to that hard-to-reach light switch, rubbing my wife's back, etc. have now returned to my regular agenda with more comfort than in many years. This stability is good.

              I still suspect that this will be a five or ten year fix and that I'll have to do it again, but heck, ten years ago the only fix was major finger surgery. Who knows what will be available in five years hence?

              Good story, thanks for sharing. Can you say which clinic and or surgeon helped you?

                08/19/2011 21:32
                BFDeal 
                08/19/2011 21:32
                BFDeal 
                Re: Personal experience

                Quote:
                Good story, thanks for sharing. Can you say which clinic and or surgeon helped you?

                When I first started looking for someone to do needle release (NR), the only places I could find were in Jupiter, FL and in the Bay Area which are pretty far from Telluride, CO. Last fall, through this website I found Dr. Ryan Grabow in Las Vegas, only nine hours driving from here. I found out that he'd done over 1000 NRs, and I was able to speak to him on the phone twice before scheduling the procedure. He and his staff took care of everything I needed and gave me great confidence to go ahead with NR.

                Even our local hand surgeon is doing this now. He'd done about 15 by last fall and now is up to 45, with pretty good success I hear.

                  09/14/2011 21:05
                  marigail 
                  09/14/2011 21:05
                  marigail 
                  Re: Personal experience

                  Just to update my saga..... I've had two xylaflex injections in the left pinkie, and I'm about 85% straight. I can use the pinkie quite well, but there is a constant achiness that will not go away. Last time I visited the doctor he had me rub a topical cream (Vicodin) on it. No help. When I went back this week, the doctor thought that perhaps there is swelling under the cord that was severed, and suggested a cortisone shot. No thanks.....Next he suggested physical therapy where he'd have the therapist use the Vicodin and ultrasound. Next suggestion was surgery---absolutely not---and the last option was to wait some more and see if I'm just a slow healer. So, if this is the way it is going to be---I can live with the achiness, although I really don't want it to get worse. I have an infrared machine and I'm going to use it every day for awhile and see what happens. It is similar to the ultrasound he suggested, and I have the Vicodin, so I'll try it myself.

                  No one has come forth with this same experience---the achiness. I'd love to hear about it if you've experienced it. I'm still glad I did this--I hope the finger stays as straight as it is. The one thing the doctor did say was no more xylaflex in this finger. I can drink to that!!
                  Marigail

                    09/15/2011 01:15
                    marigail 
                    09/15/2011 01:15
                    marigail 
                    Re: Personal experience

                    The first xylaflex shot was very bothersome, but maybe because I knew what to expect with the second it wasn't so bad. there is no numbing for the shot itself, but they do numb you to break the cord, and THAT shot is nothing at all. Many have said that the shot didn't bother them at all, but I'd be lying if I said that. I'm still glad I did it, despite everything.

                       1 2 3 4 5 6 .. 29 .. 51
                       1 2 3 4 5 6 .. 29 .. 51
                      Personal   something   fingers   procedure   surgery   contracture   different   surgeon   injections   injection   therapy   Dupuytren   disease   nodules   experience   treatment   Xiaflex   because   doctors   research