Dystonia and amputation

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KatC7
KatC7 Online Community Member Posts: 5 Listener
edited February 2019 in Everyday life
Hi I have Dystonia which is a crippling muscle disorder,  my right foot is very twisted and fixed in that position. I have constant muncle spasms and mycolonic jerks. What I really want is my right leg amputated to stop the pain.  Anyone here with advice on the subject?

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  • KatC7
    KatC7 Online Community Member Posts: 5 Listener
    Hi I have Dystonia which is a crippling muscle disorder,  my right foot is very twisted and fixed in that position. I have constant muscle spasms and mycolonic jerks. What I really want is my right leg amputated to stop the pain.  Anyone here with advice on the subject?
  • cara
    cara Online Community Member Posts: 21 Listener
    Welcome.KatC7 . I.can't help you but the site is good and someone will surely contact you. 
  • thespiceman
    thespiceman Online Community Member Posts: 6,283 Championing
    Hello @KatC7   Pleased to meet you welcome.

    Thank you for joining and sharing.  Sorry to hear that your in pain.

    I am one of the community champions who help and advise new members who join.

    Have you spoken to your Doctors about your pain and the problems that you are experiencing.

    There will be members of our community who will identify what you are going through.  Have a look at our website.  

    Hope that helps.

    Please take care.

    @thespiceman
  • steve51
    steve51 Online Community Member Posts: 7,121 Championing
    Hi @KatC7

    Good Evening & Welcome it’s great to meet you tonight?

    Yes I have been in your situation since 2005 when a “Brain Opp” left me with “Chronic Pain” all the way down my right hand side.

    I have contemplated having my “Right Leg”
    “amputated” 

    After discussing with a “Consultant” & doing my own homework.

    The “Consultant” said “No”

    My own “homework” lead to believe that I would only make things 10 times worse as my Pain isn’t in my “Leg” but it is in my “Brain”

    Please please do your own searching as it maybe different in your case!!!!!!!!

    @steve51
  • KatC7
    KatC7 Online Community Member Posts: 5 Listener
    thank you, yes my doctors know and i'm on a lot of pain meds but I don't take as many as i'm told because if I do i feel like a zombie, cannot concentrate or function normally. I became a widow almost 2 years ago and had to move house as without him I couldn't cope with the stairs at home, I'm in a wheelchair most of the time, so I'm now in a purpose built bungalow but its not home you know? However it is perfectly suitable for an amputee so I'm hoping that goes in my favour.
  • KatC7
    KatC7 Online Community Member Posts: 5 Listener
    I was a care supervisor before I was forced to give up work because of my condition, I worked with many amputees, one of which i'm still good friends with. I have researched it in depth, my pain is in my lower leg, mostly the ankle and after 7 years of my foot getting worse day by day I really can't handle it any more, I know all the excuses: you'll suffer phantom pains, you may never learn to walk on a prosthetic, again I know amputees and phantom pains are a lot more rare than they make out, I've prepared myself mentally for this now I just need to find a doctor who will do it.

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