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3rd round of RT....your thoughts
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09/20/2014 20:42
GaryBall 
09/20/2014 20:42
GaryBall 
Re: 3rd round of RT....your thoughts

Christl:
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
Thanks for this Chistl.....I hope you are doing well.....I must admit this is something I was nt aware of .....I assume dr. chin is using xiaflex....I will check it out......for me the long term consequences of any treatment are really important......I m 49 and do nt want to stir up the disease more than absolutely necessary!!!.......I can at least still walk and run in short bursts in the garden so things could be worse...thanks for the post and I will do a little more research....And like seph has said many times..... active disease can be painful and then it settles down and does nt mess with his life.....

Gazza


Gazza

    09/20/2014 21:14
    GaryBall 
    09/20/2014 21:14
    GaryBall 
    Re: 3rd round of RT....your thoughts

    spanishbuddha:
    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.

    Cheers seph and SB for the input....

    I have to say if it was n t for seph I would be more inclined to chase treatment options......I totally relate to pain and discomfort being at its worse when nodules are forming....and then pain subsides when they settle....of course the concern is that once settled you cannot treat effectively with RT.....and if the disease has progressed and involves nerves etc the situation can be very difficult at best......seph has had 40 years of this and seemingly it has nt effected his life too much!!....and I would assume his feet have very significant LD.....maybe judgement by him....or maybe just luck....

    On the other hand I agree with SB......it seems to me that most people seem to develop first symptoms in there prime hand.for DD...this could indicate use age.... however little can trigger the disease.....it makes absolute sense to me to wear gloves and do everything to prevent any micro injuries that may kick things off.....

    From personal experience, It seems to me that RT is most effective in fairly non aggressive cases.....it can interfere with cells during an active stage and stop progression......however, once the disease re activates the previous
    Treatment has no influence......it may just be anecdotal but my situation seems to be more active 2.5 years after RT than it was prior to treatment....

    On a side note seph you need to check your data regarding a nations sporting success.....maybe checkout olympic medal tables to get an accurate gauge of how things are.....being champions in a sports that few other countries take part do nt really count....

    Gazza

      09/20/2014 23:03
      Seph 
      09/20/2014 23:03
      Seph 

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

      Gary; Shall we talk rowing or sailing. And if you adjust per capita you get an amazing outcome. Oh and you might like to check out women's shot put or golf caddies. I know we missed out on the America's Cup this year but only because we armed our opposition.

      As for the RT I Dr Dilley commented to me a couple of weeks back that the jury is out on RT. His comment was that the 5 year recurrence rate seemed to be statistically the same for people that get Rt and those that don't. I didn't ask where he got the data from so don't know if it is based on real stats or just anecdotal observations.

      I guess I am taking the view that when all else fails I will have surgery again but in the mean time I will continue with my NA program.

        09/21/2014 02:41
        GaryBall 
        09/21/2014 02:41
        GaryBall 
        Re: 3rd round of RT....your thoughts

        Seph:
        Gary; Shall we talk rowing or sailing. And if you adjust per capita you get an amazing outcome. Oh and you might like to check out women's shot put or golf caddies. I know we missed out on the America's Cup this year but only because we armed our opposition.

        As for the RT I Dr Dilley commented to me a couple of weeks back that the jury is out on RT. His comment was that the 5 year recurrence rate seemed to be statistically the same for people that get Rt and those that don't. I didn't ask where he got the data from so don't know if it is based on real stats or just anecdotal observations.

        I guess I am taking the view that when all else fails I will have surgery again but in the mean time I will continue with my NA program.


        I would be interested in where he got his data......the data from prof s. studies show a significant long term advantage of RT over opting for no RT.

        I ll be hoping the Olympic committee opt for making "golf caddying" an event for Rio.....just for you seph...

        Gazza

          09/21/2014 05:00
          Seph 
          09/21/2014 05:00
          Seph 

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

          I am seeing Dr Dilley next Tuesday for my first shot at NA in Australia. If i get the opportunity I will ask where he got the RT stats from.

          Seph

            09/21/2014 06:55
            GaryBall 
            09/21/2014 06:55
            GaryBall 
            Re: 3rd round of RT....your thoughts

            Seph:
            I am seeing Dr Dilley next Tuesday for my first shot at NA in Australia. If i get the opportunity I will ask where he got the RT stats from.

            Seph

            Good luck seph...

            Let us know if your aussie experience can match the French....

            Gazza

              09/28/2014 23:57
              Penny 
              09/28/2014 23:57
              Penny 
              Re: 3rd round of RT....your thoughts

              Found this link for you medical people out there on Dr. David Chin's method...please let me know what it says in laymen's terms.

              http://patentscope.wipo.int/search/en/de...;tab=PCT+Biblio

                09/29/2014 08:18
                GaryBall 
                09/29/2014 08:18
                GaryBall 
                Re: 3rd round of RT....your thoughts

                Penny:
                Found this link for you medical people out there on Dr. David Chin's method...please let me know what it says in laymen's terms.

                http://patentscope.wipo.int/search/en/de...;tab=PCT+Biblio


                Hi Penny.

                My understanding is that he is injecting tissue plasminogen activator into cords and nodules....this is a product that has been used for quite some time to reduce blood clots in stroke victims.....It has been claimed that there has been significant success in treating LD and DD....i ve tried to contact Dr. Chin and talk to him about the treatment.....But so far i have not heard back from him.....
                There is one very good patient account of this treatment on gary's ledderhose blog. There is an extract from it on christls post on this thread.
                I hope you are doing well Penny.....how are things with you and the hyaluronidase injections?

                Gazza

                Edited 09/29/14 11:23

                  09/30/2014 17:35
                  Penny 
                  09/30/2014 17:35
                  Penny 
                  Re: 3rd round of RT....your thoughts

                  Gary ,
                  Thanks for the response as for me I decided to try adipose tissue stem cell injections and unfortunately they have triggered an angry response from my feet. I have been looking at stem cell and long story how it came about but decided to try it. I had also read as much of this article as I could:
                  http://www.researchgate.net/publication/...ren%27s_disease

                  Not having an affiliation with a medical hospital I couldn't read the whole article.

                  I had it intravenously and also injected directly into the nodules--that I think was the mistake.. it fired them up and now I am really struggling again. I still think this is a very good possibility but the method was definitely wrong. So I am headed back to San Antonio, Dr. Davis to see what he thinks. The nodules on the balls of my feet are much more visible and defined and my feet ache and feel like they are being pulled under.

                  Next step???
                  Penny

                    09/30/2014 23:54
                    GaryBall 
                    09/30/2014 23:54
                    GaryBall 
                    Re: 3rd round of RT....your thoughts

                    Penny:
                    Gary ,
                    Thanks for the response as for me I decided to try adipose tissue stem cell injections and unfortunately they have triggered an angry response from my feet. I have been looking at stem cell and long story how it came about but decided to try it. I had also read as much of this article as I could:
                    http://www.researchgate.net/publication/...ren%27s_disease

                    Not having an affiliation with a medical hospital I couldn't read the whole article.

                    I had it intravenously and also injected directly into the nodules--that I think was the mistake.. it fired them up and now I am really struggling again. I still think this is a very good possibility but the method was definitely wrong. So I am headed back to San Antonio, Dr. Davis to see what he thinks. The nodules on the balls of my feet are much more visible and defined and my feet ache and feel like they are being pulled under.

                    Next step???
                    Penny



                    aaaarrrrrhhhhh!!

                    Thats not good Penny!!!!......the more I get to know about this disease......the more i feel you have to leave alone.....unless you MUST get treatment because of the pain.

                    i hope that Dr. Davis has a solution for you......it sounds like its gone mega active.....i can t remember if you ve had Rt.....it might be an option!!!

                    i hope things turn arround for you....please keep us posted...

                    wishing you the best

                    Gazza

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