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Personal experience
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10/22/2012 19:54
Seph 
10/22/2012 19:54
Seph 

Re: Personal experience

mobaygirl; Part of the problem could be that you are seeing a surgeon and they seem to like to cut things up.

I live in Australia and had conventional surgery on my left hand 15 years ago. When my right started to have problems I asked my hand surgeon about alternative treatments and he told me that surgery was the only option and it made sense to leave it as long as possible.

When I found out about NA I confronted the surgeon and he said that their association had discussed NA and decided it was not safe. He was unapologetic and gave me a lecture about the risks of nerve damage from NA and said that if I went ahead and got NA done overseas he would be there to repair the damage.

There are now a few surgeons doing NA in Australia but they are vary cautious and seem to have all sorts of situations where they think NA is not suitable or needs to develop further. That is the reason that I go France to get NA done.

    10/22/2012 21:09
    Tusk 
    10/22/2012 21:09
    Tusk 
    Re: Personal experience

    To correct contracture issues, NA is far and away preferred over traditional open surgery. Like Seph said, most hand surgeons aren't trained in NA and don't offer it, so they won't be an advocate for it. I've never heard of waiting until full contracture but many doctors advise waiting until the contracture interferes with your hand function before proceeding with traditional surgery. I would think surgery would be much more difficult in stage 3 or 4. Stage 3 is 90-135 degrees. NA is usually recommended to be performed at an earlier stage than surgery.

      10/22/2012 22:28
      callie 
      10/22/2012 22:28
      callie 
      Re: Personal experience

      This is considerable misinformation that is being spread. There is not a textbook/medical school in the world that suggests "waiting until you have full contracture probably makes sense only if full surgery is the only treatment being considered". It doesn't ever make sense unless a person just doesn't want to have any treatment.

      Optimum time for surgery is generally considered to be 30-50 degrees.

      Edited 10/23/12 01:42

        10/22/2012 22:42
        mobaygirl 
        10/22/2012 22:42
        mobaygirl 
        Re: Personal experience

        callie:
        This is considerable misinformation that is being spread. There is not a textbook/medical school in the world that suggests "waiting until you have full contracture probably makes sense only if full surgery is the only treatment being considered". It doesn't ever make sense unless a person just doesn't want to have any treatment.


        Well Callie all I know is what my Dr. told me and I was making a statement that pertained to him. Thus the reason for a second opinion and my saying if this new Dr. shares this same course of wait to treat philosophy then I will go outside my HMO to for treatment options. None of it makes sense to me but this is my "Personal" experience.

        I found this group and forum when I was told I had DD and given ZERO information on the condition. All I got from my Dr. was the statement that I could thank my ancestors that gave me my blond hair and blue eyes. After reading others experiences I have started posting my own finding that the folks here are generally caring and knowledgeable. That I now have others I can ask questions of because my Dr. was one who did not care to be questioned and believe me I have tons of questions.


        STEPH: Your surgeon sounds a lot like the Dr. who diagnosed me. I am glad I am going for that second opinion.

        Edited 10/23/12 01:43

          10/22/2012 23:29
          marigail 
          10/22/2012 23:29
          marigail 
          Re: Personal experience

          Callie, I am NOT spreading misinformation, I'm telling it the way it has been, in my case. This particular stream talks about "personal experience," and this is what I have been sharing. I do not mean to suggest that people wait until the contraction is really bad----what I am relaying is what MY doctors have suggested. The fact that I have made the choice to seek another type of treatment (NA) would not have happened had it not have been for this forum.

            10/22/2012 23:35
            mobaygirl 
            10/22/2012 23:35
            mobaygirl 
            Re: Personal experience

            Thank you Mairgail for sharing! it is interesting hearing what others have experienced with their Drs. looking for optimal treatment of this condition. Sad to hear there are other Drs. that believe in the same course of treatment as mine.

              10/23/2012 00:24
              callie 
              10/23/2012 00:24
              callie 
              Re: Personal experience

              This is misinformation. The "standard of treatment is to wait until it is a stage 3 or 4 before any real intervention". That is simply a false/misleading statement, especially for anyone new to the disease.

              Mobaygirl said, "I am amazed that with ALL the advancements in medicine that there is a medical condition that the standard of treatment is to wait until it is a stage 3 or 4 before any real intervention".

                10/23/2012 00:27
                GaryBall 
                10/23/2012 00:27
                GaryBall 
                Re: Personal experience

                mobaygirl:
                Thank you Mairgail for sharing! it is interesting hearing what others have experienced with their Drs. looking for optimal treatment of this condition. Sad to hear there are other Drs. that believe in the same course of treatment as mine.


                Hi mobaygirl,

                Sorry to read of your situation...it is not unsimilar to my situation when I was diagnosed with LD last year.....I live in NZ....the medical knowledge seamed limited....and the hoops to jump through to get treatment....never ending....

                This forum was a huge asset to get onto for info.... and understanding what may lay ahead.....so ......I decided to take the BS out of the equation and go to Germany and see prof seegenschmeit.....I was treated within a week of contacting him.......the whole process was easy despite the llllloooonnnnggggggg flight......did nt cost the earth either.....From my perspective the best move I could have made.....

                He has huge experience with the disease and related conditions.....I feel safe in the knowledge that if my condition worsens......I gave it the best shot when it came to getting treatment......

                There are many posts on the forum regarding RT in Germany and also some good stories in personal experiences......please take the time to read some of these and consider the options

                Good luck

                Gazza

                  10/23/2012 00:29
                  mobaygirl 
                  10/23/2012 00:29
                  mobaygirl 
                  Re: Personal experience

                  callie:
                  This is misinformation. The "standard of treatment is to wait until it is a stage 3 or 4 before any real intervention". That is simply a false/misleading statement, especially for anyone new to the disease.

                  Mobaygirl said, "I am amazed that with ALL the advancements in medicine that there is a medical condition that the standard of treatment is to wait until it is a stage 3 or 4 before any real intervention".


                  Callie you are correct I DID say that However I was speaking in terms of MY PERSONAL Experience what THIS forum is ALL about. That IS the standard of treatment the Dr. I have seen as well as the Physical Therapist said was THEIR standard. I was NOT making a general statement regarding the ENTIRE Medical Community and all the therapy's that seem to be available. Re read my entire posting and please do NOT take my words out of context and accuse me of spreading misinformation.

                    10/23/2012 00:33
                    moondanc 
                    10/23/2012 00:33
                    moondanc 
                    Re: Personal experience

                    wach:
                    Thank you for this summary, moondanc! Those interested in the Xiaflex trials and studies find some of it on

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

                    Time and trials will tell whether Xiaflex provides a longer recurrence period than NA. In cases where a section of the cord is dissolved Xiaflex might be better than NA, but that's something yet to be proven. Xiaflex also changes the elasticity of the cord and it might be that some of the treated cords don't break but are extended. In those cases recurrence might (!) be faster than with NA but, again, this would need to be researched.

                    Wolfgang
                    PS: The outmost joint (DIP joint) is rarely affected by Dupuytren's. In their 2002 trial Badalamente, Hurst and Hinz report 1 DIP joint affected in 80 patients.

                    Wolfgang-- thanks for posting links to the literature. They used to say open hand surgery was way more successful than NA because after NA, DD often came back. Now they say that Xiaflex is more successful than NA but there are no real long-term double blind large scale studies. I found an interesting quote in one of the studies in your links with regard to surgery!:

                    "Extension of disease to previously unaffected areas, recurrence of contracture, or both occur in 26 to 80% of patients after surgery, depending on the patient's diathesis and the type of surgery performed.21 Repeat surgery, when indicated, is usually more challenging.8,11 In this study, patients who had a reduction in contracture to 0 to 5 degrees were monitored for 30 days after the last injection. This time frame was insufficient to assess recurrence, and we cannot make any claims about this outcome.

                    So-- ask yourselves-- all of you who are considering Xiaflex. The first doctor to use NA in the United States and the doctor with the most experience with NA is Dr. Charles Eaton, a board certified eminently respected hand surgeon and founder of The Hand Center in FL. Dr. Eaton does NOT recommend Xiaflex and does NOT use it on his patients. I don't know if he's made a public statement about his reasons but I'd love to know what they are-- he's also a researcher, has put on DD seminars and is a founder of the Dupuytren Foundation. Please think twice before Xiaflex.

                    Moondanc

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