Hi, my name is S62! — Scope | Disability forum
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Hi, my name is S62!

S62 Member Posts: 2 Listener
Hi I'm sarah..about 8 years ago I found I was having severe pain in my neck and shoulders..I had an MRI..showing a bone spur had grown into the spinal cord at the top of my spine. I had to wait 2 years for an op resulting in a lot of nerve damage. Then the same happened in the lumber region of my spine , again 2 year wait, I was in total agony..since then it's just getting rapidly worse. Lot of nerve damage I find sitting v v painful, can hardly walk. I use a mobility scooter and wheelchair. Recently they found more damage so need another op. I can bear to wait 2 years. I am on slow release morphine , oral morph for v bad days.
its like deep grief, I'm sure you all understand. I am 54 so I v blessed I not had this all my life.
my husband v caring, I have 3 lovely children all grown up and 3 grandchildren. I find it so so hard I can only cope for hour or so with them and becoming harder as they mean world to me.
i have a ting King Charles spaniel, she cuddles me all day!!! A big comfort and company.
i have been to pain management some of it helped..mainly seeing others had same emotions..but hard as I knew something else going on and was told it in my head..MRI showed different!!!
so looking forward to getting to know people on here, I hope I can help people too. I'm sure mine us minor compared to many.
its the non stop pain I find too much Sarag


  • S62
    S62 Member Posts: 2 Listener
    Sorry I meant tiny King Charles spaniel!! And sarah not Sarag ..my typing lol
  • Fairplay43
    Fairplay43 Member Posts: 6 Listener
    Hi Sarah, I am new on here too as I only joined yesterday, but your story touched me inn such a way I felt I had to share my story with you. as Back in 1995 I had an operation that went wrong which caused terrible nerve damage to my spinal cord, leaving me in excruciating girdle pain 24/7. I was in agony for 8 years with no relief whatsoever from the NHS. Like you they said a lot of it was in my head. I couldn't concentrate on anything for more than a couple of minutes because of the pain I was in. By chance one day in a local charity shop, I came across a very technical medical  book about how the nervous system works, & felt compelled to buy it for a few pounds. It was an absolute life saver. I knew as soon as I opened it, it talked about how I was feeling exactly, & this resulted in me going to see a specialist physiotherapist in London, who I felt would be able to help. He was a specialist in Musculoskeletal Physiotherapy, who understood completely, why I was in pain, because he could identify the cause, & he had the expertise & knowledge to know how to treat it. Initially I had to pay privately, & I was only able to do this as my Mum had just died & left me some money. I began to make very slow progress, & because the treatment I was having was so specialised, & could not be given in my home town (which was 250 miles away from London) the local Primary Care Trust (now called CCG Commissioning Care Group) funded my treatment & train fares to London for over a year. When you're in constant pain, you feel like no one else understands, as it completely drains you of every ounce of energy. I sincerely hope that one day you will find relief from an unexpected source like I did.
  • steve51
    steve51 Member Posts: 7,153 Disability Gamechanger
    Hi @s62 @Fairplay43

    A very very big welcome to you both to our website & online community.

    It's great to have you both onboard !!!!!!!!

    I'm very sorry to hear off you current problems !!!!!!!

    Please please let me know if I can in anyway ????


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