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Hi I'm New to Forum and Dupuytren's
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03/31/2012 10:22
muffinsands 
03/31/2012 10:22
muffinsands 
Re: Hi I'm New to Forum and Dupuytren's

Hi, I'm new to DD too. Small pea sized growth in palm of hand below the ring finger of left hand. Mentioned it in passing to GP last Monday - he was very blase and just said wait until the hand starts to contract - no info, didnt even name what it was!! I trawled the web looking for answers - and what answsers. I am year 2 recovered from ovarian cancer but took that in my stride. Sounds stupid but I am more upset about DD as my handicrafts are the only thing that keeps me sane - I look after my mum in law who is 90 and has Alzheimers. The 'pea' has grown by half again over the last week and I can feel a raised cord going up and down from it. My hand itches like mad and I get 'electric shocks' when I turn taps or hold cutlery. Should I go back to the GP and ask for a referral - everyone seems to have different ideas if it would make a difference or not. Cant afford private so what would they do for me on the NHS?

    03/31/2012 13:56
    Larry 
    03/31/2012 13:56
    Larry 
    Re: Hi I'm New to Forum and Dupuytren's ... What to do ?

    If the nodules grow fast and you still have a full stretch of all fingers, do radiotherapy as early as possible ...

    I waited too long, but now radiotherapy (RT) has helped me to control my disease at both feet and one hand for more than 4 years ...

    All the best, Larry

      03/31/2012 14:56
      Christl 
      03/31/2012 14:56
      Christl 

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

      Agree with Larry. Go as soon as you can and get RT done. It will stop the progression cold. Seems your DD is in the beginning and active. Perfect time to zap.

      Christl

        04/01/2012 20:17
        muffinsands 
        04/01/2012 20:17
        muffinsands 
        Re: Hi I'm New to Forum and Dupuytren's

        Tks for the encouragment - I cant see getting much encouragement from my GP. I have been sufferring from Fibromyalgia symptoms for over 8 years but all he wants to do is treat each and every symptom with steroid injections. I manage it with a controlled diet - but getting harder and harder (raw green veg are ok as the main attraction for the first 6 months but after that they loose their appeal !!!! ) I have been reading all the comments on the various sites and will try some of the dietry suggestions while I am waiting for NHS. I have already tried the vitamit E oil on my palms for going to bed - it seemed to help with the itchy feelings.
        I read with interest the 'manual workers' connection as I used a lot of fimo clay in my crafting and the kneading in my left palm would have a similar effect to working pressure on the actual point where my first lump started. I used to make tiny fimo teddies to sell for charity - cant now as it is too painfull to knead the clay.

          04/01/2012 22:10
          GaryBall 
          04/01/2012 22:10
          GaryBall 
          Re: Hi I'm New to Forum and Dupuytren's

          Hi muffinsands,

          I feel for you and your situation. I think we can all relate to it...
          .
          It seems loss of function is a major factor for you. If this is the case you should find a way of getting RT ASAP.
          There are many posts on the forum regarding this treatment and it's success in Germany. The cost I believe is also not prohibitive. Especially from the uk.. There is also a thread on RT costs on the forum..


          I wish you all the best..

            04/02/2012 20:01
            Cyclist 
            04/02/2012 20:01
            Cyclist 

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

            Hi MS
            You don't need your GP's approval. Also, remember that GPs have to deal with an enormous variety of conditions and they don't always have the information or resources to deal with everything well, particularly relatively rare conditions such as this.
            RT is not yet freely recommended in Britain or Aust (where I am located) where health professionals are ignoring RT as a viable option, which appears to be more due historical misconceptions to do with RT than any particular scientific evidence. As a result they are still recommending surgery which is widely understood NOT to have good outcomes for this condition.
            This means you will have to inform yourself and then blaze your own trail, as many of us on this forum have done, because the health system in our countries have not met our needs.
            You could start by getting a more pro-active GP to inform your information gathering and decision-making.
            All the best
            Di


            muffinsands:
            Tks for the encouragment - I cant see getting much encouragement from my GP. I have been sufferring from Fibromyalgia symptoms for over 8 years but all he wants to do is treat each and every symptom with steroid injections. I manage it with a controlled diet - but getting harder and harder (raw green veg are ok as the main attraction for the first 6 months but after that they loose their appeal !!!! ) I have been reading all the comments on the various sites and will try some of the dietry suggestions while I am waiting for NHS. I have already tried the vitamit E oil on my palms for going to bed - it seemed to help with the itchy feelings.
            I read with interest the 'manual workers' connection as I used a lot of fimo clay in my crafting and the kneading in my left palm would have a similar effect to working pressure on the actual point where my first lump started. I used to make tiny fimo teddies to sell for charity - cant now as it is too painfull to knead the clay.


            Edited 04/02/12 23:06

              04/03/2012 06:49
              spanishbuddha 

              Administrator

              04/03/2012 06:49
              spanishbuddha 

              Administrator

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

              Sadly in the UK you do need a GP's approval and referral if you want to get specialist treatment on the NHS.

              Muffinsands what I would suggest is you take a printout of the leaflet from the British Dupuytren's Society website dupuytrens-society.org.uk back to your GP and discuss the options listed there with him. He may say that Radiotherapy is not available in your local care Trust, so his position remains come back when there is a contracture, but you can still argue that early referral to a specialist is important, and anyway why isn't Radiotherapy available (refer to NICE)?

              I would also start a diary about your hand(s) including photo's and any symptoms so that you have a record of how it progresses, if at all, or slowly or very actively. That way you also have evidence to show and discuss with your GP or hand specialist. Since you do crafts, if not already, find a way to protect your hands from even minor trauma, but do keep doing crafts. Example: I play tennis, but stopped recently for three months, in that time unbeknown to me a nodule developed in my racquet hand. When I restarted I felt it straight away and it hurt, but I strapped it up, wore a glove and now it seems to me that maybe, just maybe, actually playing tennis is helping reduce the size, or inhibit growth of the nodule.

                04/03/2012 09:15
                muffinsands 
                04/03/2012 09:15
                muffinsands 
                Re: Hi I'm New to Forum and Dupuytren's

                Tks yall for the suggestions

                I will def start keeping the diary with photos - tho not a lot to see at the moment, I have quite fleshy palms and small amount of water retention thanks to the removal of a lot of lymph glands in my cancer op - but I can feel the 'cord' spreading from the small lump - bout 1cm up and down at the moment.

                My 5 year old gandson was staying with us over the weekend and it broke my heart to say no when he asked me to make him a fimo optimusprime type figure - I had made him a full set of Octonaught type figures over Christmas - I did wonder why it hurt so much more than making the teddy bears 3 months previous for a charity sale. I 'do' a lot of handicrafts so losing one is not too bad - I can still manage the knitting, crochet and jewellery making. I was a 12th scale miniaturist before my big op - but had to give that up as I cant sit hunched over to do the intricate work needed - I specialised in wigs for dolls house dolls but made anything in that genre in wood, clay, fabric or viscose - transferred over to mainly the jewellery making now - should be able to manage that for quite some time if I can delay the contracture.

                  04/03/2012 20:53
                  Cyclist 
                  04/03/2012 20:53
                  Cyclist 

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

                  Hi SB
                  GPs are the first point of contact in Aust too and required for secondary care by a specialist. What I meant by not requiring the GP's approval is that the GP doesn't need to personally approve a patient's choice of treatment to provide a referral in a changing landscape of a more patient-centred approach to primary care.
                  In other words: Muffinsands - you will do well to arm yourself with information as SP suggests and feel free to assert your own choice of treatment. View your doctor as an advisor, rather than 'the gospel' and critically consider their (unscientifically warranted) biases to certain treatments.
                  Cheers
                  Di

                  spanishbuddha:
                  Sadly in the UK you do need a GP's approval and referral if you want to get specialist treatment on the NHS.

                  Muffinsands what I would suggest is you take a printout of the leaflet from the British Dupuytren's Society website dupuytrens-society.org.uk back to your GP and discuss the options listed there with him. He may say that Radiotherapy is not available in your local care Trust, so his position remains come back when there is a contracture, but you can still argue that early referral to a specialist is important, and anyway why isn't Radiotherapy available (refer to NICE)?

                  I would also start a diary about your hand(s) including photo's and any symptoms so that you have a record of how it progresses, if at all, or slowly or very actively. That way you also have evidence to show and discuss with your GP or hand specialist. Since you do crafts, if not already, find a way to protect your hands from even minor trauma, but do keep doing crafts. Example: I play tennis, but stopped recently for three months, in that time unbeknown to me a nodule developed in my racquet hand. When I restarted I felt it straight away and it hurt, but I strapped it up, wore a glove and now it seems to me that maybe, just maybe, actually playing tennis is helping reduce the size, or inhibit growth of the nodule.

                    04/04/2012 22:17
                    stephenp 
                    04/04/2012 22:17
                    stephenp 
                    Re: Hi I'm New to Forum and Dupuytren's

                    Christl:
                    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

                    In my case nodules, developed about 5 yrs ago then progressed no further and did not present any problems so I more or less ignored it. I was really not aware of RT options. However about 12 months ago the disease became quite active, prompting me to look at treatment options as I was aware of recurrence of the contraction following my father's surgery. A colleague with DD who had surgery and has recurrence, informed me about the RT option which I actively pursued. In my reading of the literature and in following discussions on this forum, it seems RT is most likely to work best when the disease is active and before contraction occurs. If nodules develop in my other hand I will be going back for RT early and not waiting for 5 yrs!

                    I think the literature supports the value in trying RT early and it has a 70-80% chance of being effective if the treatment is given before contractions develop. Once contractions develop there is still a reasonable success rate but somewhat lower. Maybe the 20% failure rate of RT occurs when treatment is given when the disease is less active? Others may have a better sense of this or there may be something in the literature.

                    Stephen

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