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3rd round of RT....your thoughts
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09/15/2014 05:50
GaryBall 
09/15/2014 05:50
GaryBall 
3rd round of RT....your thoughts

In January 2011 I flew to Germany and had RT on both of my feet. I had LD in both feet with each foot having 1 nodule and 1 significant cord... I followed up three months later with a second round.....for the first six months there was an improvement in my situation.....there was a reduction in nodule size and no activities disease......however since then the single nodules have formed into clusters of 3 and new nodules have formed elsewhere.....the most annoying is 1 on each load bearing area of the ball of the foot ......very irritating!!!

I have spoken to Prof S. who suggests the best option is a 3rd round of RT on the new nodules......he believes the reason for new growth is an "over active background situation"......I have faith in the Prof but I find myself questioning the options...

Will more RT just give me the same outcome as before??

Will RT stimulate more disease progression....(my hands ached like mad 3 weeks after RT on my feet)

Would RT hinder other more invasive procedures at a later date if required.

Would I be better off opting for the leave it alone treatment option that some of you advise..

Would a 3 rd round be better saved for after a possible surgical intervention....I want to avoid surgery at all costs but I think my situation is going down that road..my feet are tight and painful!!

Any thoughts out there....I know we are not doctors but the collective advice on this forum beats the life out of any practitioner I ve spoken to here in NZ...

    09/15/2014 06:47
    spanishbuddha 

    Administrator

    09/15/2014 06:47
    spanishbuddha 

    Administrator

    Re: 3rd round of RT....your thoughts

    I was offered a third dose of RT on one area of one hand on my last visit. Different I know. But, I decided then that the hand was not 'bad enough' to go ahead, so I would hold back and reconsider if it got worse. It's been about 9 months and the area that was giving me problems me problems has settled down.

    Only you can judge how much 'bad enough' is for you right now, versus the risks of it developing much worse or the risk of using that RT dose now and not later. By all accounts surgery on the feet is something to be avoided in most cases, so I would be inclined to explore all other options first, including putting up with quite severe discomfort or pain, and using a third dose of RT when it is really ' bad enough'.

    Feet can be a problem for diabetics, I don't know if you are one, but something else to think about.

      09/16/2014 05:03
      GaryBall 
      09/16/2014 05:03
      GaryBall 
      Re: 3rd round of RT....your thoughts

      spanishbuddha:
      I was offered a third dose of RT on one area of one hand on my last visit. Different I know. But, I decided then that the hand was not 'bad enough' to go ahead, so I would hold back and reconsider if it got worse. It's been about 9 months and the area that was giving me problems me problems has settled down.

      Only you can judge how much 'bad enough' is for you right now, versus the risks of it developing much worse or the risk of using that RT dose now and not later. By all accounts surgery on the feet is something to be avoided in most cases, so I would be inclined to explore all other options first, including putting up with quite severe discomfort or pain, and using a third dose of RT when it is really ' bad enough'.

      Feet can be a problem for diabetics, I don't know if you are one, but something else to think about.


      I thought this might be your response SB.....I find it very difficult to decide what to do......we have a member on this forum who has had LD for 40 years and advises to basically leave treatment alone.....he seemingly has a pretty good life just walking through it!!......the other point of view is to radiate active disease to reduce progression....this of course backed up by prof S......with seemingly good data.....in my case the 2 rounds of RT has so far not reduced progression and i feel may have possibly enhanced the condition....

      When I was diagnosed with LD and DD 3 years ago.....I got myself checked out for diabetes and nothing showed up....I ve also eliminated everything that was linked to the condition from my life.....even though my lifestyle had few vices.....but the disease marches on!!

      My gut is telling me to leave alone and have some some RT in my pocket for absolute emergency..... But it's a close thing at the moment.....the feet are very active and debilitating!!!

      Many thanks for your reply SB

        09/16/2014 06:04
        spanishbuddha 

        Administrator

        09/16/2014 06:04
        spanishbuddha 

        Administrator

        Re: 3rd round of RT....your thoughts

        As I'm getting older, my attitude and decision to things that are borderline, even not quite sensible, is increasingly 'have it', 'do it', ' get it', 'be it', and so on, but I missed the motorcycle phase in my fifties since I hds done that in my twenties.

          09/16/2014 06:40
          GaryBall 
          09/16/2014 06:40
          GaryBall 
          Re: 3rd round of RT....your thoughts

          spanishbuddha:
          As I'm getting older, my attitude and decision to things that are borderline, even not quite sensible, is increasingly 'have it', 'do it', ' get it', 'be it', and so on, but I missed the motorcycle phase in my fifties since I hds done that in my twenties.


          Fair play to you......just one life so you might as well have it and do it.....

            09/16/2014 11:15
            Seph 
            09/16/2014 11:15
            Seph 

            Re: 3rd round of RT....your thoughts

            I know I'm the old cracked record (For those that remember what a cracked record is) and while I agree with 'have it', 'do it', ' get it', 'be it' I still caution 'have it', 'do it', ' get it', 'be it' but don't play with it.

            I don't agree with the "protect your hand", cut out doing things etc. I carry on as normal and treat my hands as something to adjust for. Like being short or left handed or being English.

            Seph

              09/18/2014 08:14
              GaryBall 
              09/18/2014 08:14
              GaryBall 
              Re: 3rd round of RT....your thoughts

              Seph:
              I know I'm the old cracked record (For those that remember what a cracked record is) and while I agree with 'have it', 'do it', ' get it', 'be it' I still caution 'have it', 'do it', ' get it', 'be it' but don't play with it.

              I don't agree with the "protect your hand", cut out doing things etc. I carry on as normal and treat my hands as something to adjust for. Like being short or left handed or being English.

              Seph


              So....... I assume you are advocating the ......harden up and drive through it option........I m just hoping as it progresses the pain dies down!!!.......on my other dibillitating condition of being born in England.....I ve cured that with my Kiwi passport.......however, I have since contracted the condition of acting like a spoilt brat whenever my rugby team looses!!!

              Gazza

              Edited 09/18/14 11:15

                09/18/2014 10:12
                Seph 
                09/18/2014 10:12
                Seph 

                Re: 3rd round of RT....your thoughts

                Gary; when I first joined this forum I said that DD and LD were painless. I was then bashed over the head by many who said it was not painless.

                I have had the disease so long that I had forgotten that the reason they operated on my foot was that I was complaining about the pin from the lump that had developed. And in my early forties I didn't associate the pain in my hand when shaking hands with DD. That hand pain came back recently and I remembered.

                In my case the pain in my feet passed once the growths stopped. The pain in my hand, now that I know what it is, has caused me to change my grip. Other than that yes, man up and deal with it. Its not deadly so you can find a way to suck it up and ignore it.

                And being a pom you are used to loosing so it shouldn't hurt any more when you loose. And the adrenalin rush from winning as a kiwi makes it all good.

                Seph

                  09/18/2014 18:16
                  spanishbuddha 

                  Administrator

                  09/18/2014 18:16
                  spanishbuddha 

                  Administrator

                  Re: 3rd round of RT....your thoughts

                  OK let's agree to disagree. My last awakening of DD in one hand was clearly instigated by trauma when mishandling tools in the garden. I followed your advice and 'manned up' at the time and really regret it. This as a club level tournament playing tennis player and piano player. I always advise people to look after their hands, it's so easy to do versus having to manage the outcome. This is not the same as avoiding totally using the hands.

                  Edited 09/18/14 21:17

                    09/20/2014 14:25
                    Christl 
                    09/20/2014 14:25
                    Christl 

                    Re: 3rd round of RT....your thoughts

                    Gary, sorry to read your LD is giving you trouble. Here is what I read in a previous post about a Dr . Chin, he is in Brisbane, AU:

                    Re: Surgeon - Dr Amanda Reilly - Brisbane Australia - Feedback & Dr Chin
                    Hi Steven and Jaci,

                    I recently had both a Fasciotomy operation on my left hand and also my left foot for Ledderhose was injected by Dr Chin some 6 weeks ago. Hand is still recovering, but is looking good, he was going to inject the hand but it was too far gone with the tissue being very fibrous, possibly after 5 NA procedure previously (and hence not a good candidate for an injection) so we decided to strip the finger ready for a future injection if required.

                    The injection in the foot resulted in TOTAL disappearance of 4 nodules and the larger nodule (around 15-20 mm) has shrunk considerably. It was a bit sore for 2-3 days but I could still walk on it OK. Normally the injection is done with a local anaesthetic, but as I was having a general for my hand, it was done under a general anaesthetic for me. The foot is so much easier to extend straight, walking is easier and to date no side effects. Dr Chin tells me it takes up to 8-10 weeks for the injection to fully do its job, so I am hopeful the larger nodule will shrink further. Dr Chin uses an injection already approved for treating other ailments and has been using this technique for many years with great success. As he is seeking a licensing arrangement for the treatment I feel I cannot disclose too much, but I am certain if you contact Dr Chin he will be more than happy to discuss the efficacy and effect of the treatment. I believe he has an alternative to RT, freezing and other treatments for Ledderhose that once he can get the appropriate licensing in place will become a much sort after treatment. It is also very effective on DD but I can’t comment on this aspect yet as I haven’t had this treatment. In terms of cost, the injection unfortunately isn’t covered by Medicare or I don’t believe any health fund, but compared to out of pocket expenses/gaps for other treatments I think the cost will stack up, especially if you live in Brisbane and surrounds and hence little travel.

                    Best of luck to you,
                    Christl

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