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Hi I'm New to Forum and Dupuytren's
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03/22/2012 06:47
newman 
03/22/2012 06:47
newman 

Re: Hi I'm New to Forum and Dupuytren's

Hi Rich
I am an Australian having had many hand operations. In 07 after repeated surgery in the web area of thumb and forefinger I visited Prof Seegenschmiedt then in Essen Germany and was treated by XRay . (After the surgery I developed numerous nodules in the area of the surgery .which I believed was triggered by the surgery.)
My right hand was treated only with 5X3 Gy a total of 15Gy which stopped the progression. The best time for treatment is when the disease is active before contraction. I recommend reading Jonn's personal experience which Wolfgang suggested .Regards.

Edited 03/22/12 08:50

    03/22/2012 13:55
    Christl 
    03/22/2012 13:55
    Christl 

    Re: Hi I'm New to Forum and Dupuytren's

    RichSF,
    I went to Prof. S last year to get RT done on both hands. RT is done right there and then in his "Strahlenzentrum". All I can tell you, go as soon as you can, if it is active.
    Active in your hand means: more nodules are growing, tingling ,crawling, intense itching feeling, your hands feel strange, there might be some pain, I felt my hands were invaded by aliens. If you had this nodule for a long time and nothing is happening, then don't worry just yet. It might just stay that way for the rest of your life.

    Best of Luck
    Christl
    P.S.: Progression in both my hands has stopped since RT.

      03/23/2012 00:08
      RichSF 
      03/23/2012 00:08
      RichSF 
      Re: Hi I'm New to Forum and Dupuytren's

      Thanx for this info
      I wrote to both Dr S & Dr H and they replied quickly. You mention Hamburg doesn't do X-rays and suggested Dr H.. I'm confused about this. It implies that there are different types of RT. Can you please clarify this. It apoears that these 2 docs use a different type of RT. Is one type better than the other? Also is Dr H as knowledgeable &/or as competent as Dr S?
      Can you kindly clarify this for me
      Rich

      wach:
      Hi Rich,

      I don't know how responsive Prof. Seegenschmiedt is. If he hasn't responded after the weekend I would try again assuming that your email got buried under a pile of other mails. The clinic in Hamburg doesn't do x-rays, you would have to see Dr. Herkstroeter in Frankfurt (see e..g. Jonn's story on http://www.dupuytren-online.info/downloa...y_NA_RT_new.pdf).

      I myself have slight Dupuytren's in my thumb, index and in between. I had it irradiated several years ago and it has become dormant since then. The cords did not go away but are not noticably growing either. My span is a little affected but that's not an issue for me.

      Wolfgang
      RichSF:
      Hi
      Thanx 4 the speedy replies.

      Wolfgang,
      Thanx for the info on recurrence and locations. i found his clinic info and i e mailed Dr S last night to see what i have to do to get treated at his clinic in Hamburg. I haven't heard anything yet. Do you have any idea of how the process works and how long it takes to get admitted? Also is the x ray procedure done there or at another clinic somewhere else?
      By the way, what is your experience with people that have DD in the thumb and index finger (web area) region of the hand?
      ...

        03/23/2012 04:27
        wach 

        Administrator

        03/23/2012 04:27
        wach 

        Administrator

        Re: Hi I'm New to Forum and Dupuytren's

        Hi Rich,

        there is a variety radiation types that can be used for radiotherapy (x-rays, electrons, protons, neutrons, sometimes even ions). For Dupuytren's it's x-rays and electrons. I believe in the USA it's electrons exclusively (more expensive, more profitable). Both radiation types are equally effective for Dupuytren's. You might also have a look at our web site http://www.dupuytren-online.info/radiation_therapy.html which explains this in more detail.

        Wolfgang

        RichSF:
        Thanx for this info
        I wrote to both Dr S & Dr H and they replied quickly. You mention Hamburg doesn't do X-rays and suggested Dr H.. I'm confused about this. It implies that there are different types of RT. Can you please clarify this. It apoears that these 2 docs use a different type of RT. Is one type better than the other? Also is Dr H as knowledgeable &/or as competent as Dr S?
        Can you kindly clarify this for me
        Rich


        Edited 03/23/12 06:27

          03/24/2012 07:47
          Larry 
          03/24/2012 07:47
          Larry 
          Re: Hi I'm New to Forum and Dupuytren's

          RichSF:
          Thanx for this info
          I wrote to both Dr S & Dr H and they replied quickly. You mention Hamburg doesn't do X-rays and suggested Dr H.. I'm confused about this. It implies that there are different types of RT. Can you please clarify this. It apoears that these 2 docs use a different type of RT. Is one type better than the other? Also is Dr H as knowledgeable &/or as competent as Dr S?
          Can you kindly clarify this for me
          Rich

          wach:
          Hi Rich,

          I don't know how responsive Prof. Seegenschmiedt is. If he hasn't responded after the weekend I would try again assuming that your email got buried under a pile of other mails. The clinic in Hamburg doesn't do x-rays, you would have to see Dr. Herkstroeter in Frankfurt (see e..g. Jonn's story on http://www.dupuytren-online.info/downloa...y_NA_RT_new.pdf).

          I myself have slight Dupuytren's in my thumb, index and in between. I had it irradiated several years ago and it has become dormant since then. The cords did not go away but are not noticably growing either. My span is a little affected but that's not an issue for me.

          Wolfgang
          RichSF:
          Hi
          Thanx 4 the speedy replies.

          Wolfgang,
          Thanx for the info on recurrence and locations. i found his clinic info and i e mailed Dr S last night to see what i have to do to get treated at his clinic in Hamburg. I haven't heard anything yet. Do you have any idea of how the process works and how long it takes to get admitted? Also is the x ray procedure done there or at another clinic somewhere else?
          By the way, what is your experience with people that have DD in the thumb and index finger (web area) region of the hand?
          ...



          I highly recommend Prof. Seegenschmiedt in Hamburg, as he performs a very diligent examination and chooses his radiation treatment fields according to this examination plus a so called "safety margin". Moreover, he is very critical about reviewing his own data, what is not done by many other doctors who claim to produce "success"; I also believe that the use of electrons are BETTER because they can target the relevant tissues in your hand at about 5 to 10 mm depth MORE HOMOGENEOUSLY. I have been very satisfied wirth my results of two series of each 5 x 3Gy applied for both feet and one hand. The nodules in both feet now have shrunk in size by more than 70% and I am without pain, which is the best gain I could hope for. The disease in the hand has not regressed, but has stopped now, ... :-)

          Good luck, Larry

          Edited 03/31/12 17:03

            03/28/2012 09:13
            RichSF 
            03/28/2012 09:13
            RichSF 
            Re: Hi I'm New to Forum and Dupuytren's

            I read that DD starting in older people ( I'm 68) have slower progression and that there are many people who have the disease but it never gets to contraction. Is there anyone out there with this type of condition???

              03/28/2012 09:21
              wach 

              Administrator

              03/28/2012 09:21
              wach 

              Administrator

              Re: Hi I'm New to Forum and Dupuytren's

              Individually really hard to predict. My mother had her first nodule with 80 and it never went beyond a tiny nodule until she died at the age of 87.

              Wolfgang

              RichSF:
              I read that DD starting in older people ( I'm 68) have slower progression and that there are many people who have the disease but it never gets to contraction. Is there anyone out there with this type of condition???

                03/29/2012 05:51
                stephenp 
                03/29/2012 05:51
                stephenp 
                Re: Hi I'm New to Forum and Dupuytren's

                My DD symptoms included a short sharp zap like an electric shock shooting from the palm up through one finger. This particularly happened upon stretching my hand and always in the same finger. At its worst this was happening several times per day. I also had a little numbness in that finger which I have interpreted as some nerve damage and compression that is accentuated upon stretching. The hand always felt tight. I had the disease for about 5 yrs before I sought treatment.

                At 6 mo following RT this has mostly gone and I now rarely experience this pain.

                My father had DD that developed when he was in his 70s. It resulted in a severe contraction which was treated by surgery and promptly recurred. I think it would be considered to be moderately aggressive despite his age. As a matter of interest he played golf even with the contraction right into his 80s.

                My experience with the medical profession in general is that if you go to see a surgeon, he/she will operate. If you go and see an radiologist, they will treat with radiotherapy (if they are experienced enough) and GPs will say that nothing can be done until contractions develop. After reading extensively on this forum and elsewhere and going armed with the literature, I skipped the surgeon and went straight to the radiologist who agree to treat at a stage when the disease was becoming more active but prior to any contraction. There is now some much better reports on RT. The disease has regressed at 6 moths post treatment.

                The treatment and outcomes are described in a thread "Specialist in Brisbane" (I am an Aussie).

                Stephen

                  03/31/2012 04:49
                  flojo 
                  03/31/2012 04:49
                  flojo 
                  Re: Hi I'm New to Forum and Dupuytren's

                  Thanks for your update about your DD after RT. Sounds like success! That's great!

                    03/31/2012 05:02
                    Christl 
                    03/31/2012 05:02
                    Christl 

                    Re: Hi I'm New to Forum and Dupuytren's

                    Stephen, what I find very interesting is, that you had RT after already having DD for five years and it was a success. Everything I read states that RT should be done in early,acive DD to work. Go figure. I am happy for you it worked.


                    Christl

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