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Spinal cord injury

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Laine56
Laine56 Community member Posts: 2 Listener
edited October 2021 in Rare, invisible, and undiagnosed conditions
not sure where to start, i was misdiagnosed with frozen shoulder when it fact i had an almost severed spinal cord at C5/6 in my neck, was kept waiting almost 2 yrs being made to feel i was mad for suggesting it was something serious when i started to go numb, long story short.... someone had an oh **** moment and a week after my mri results i was given ACDF and fusion with a brantigan cage, thing is, i had two bleeds into my spinal cord during the operation (myelomalacia) and i still have chronic myelopathy ,my spinal cord now looks like a string of beads rather than a long strand, there are words like, progressive and chronic and stenosis littered throughout the report of my 1 yr post op mri. i can now barely walk, cannot hold a pen to write, cutlery is a challenge, i choke on food or even my own spit,  brain fog is a daily battle any info or suggestions of what ill need to cope ( i live alone ) as the years march on ( i am at present 62)  any suggestions gratefully accepted, thank you
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  • SunshineLou
    SunshineLou Community member Posts: 79 Pioneering
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    @Laine56 it sounds to me like you need to start a clinical negligence claim.
    Call up a good solicitor and ask for their advice. I can recommend Moore Blatch.
    I did the same as my treatment didn’t seem right. I was right in thinking that. Two years on and my case is well underway and I’ve just been told to expect a very substantial pay out at the end of it.
    It will cover the cost of my care for the rest of my life.
    So sorry you’ve been left with severe disabilities due to the failings of your team of Dr’s.
    They need to be held accountable so this never happens again!

    You can contact HeadWay to ask about the brain fog. I suffer from the same as I now have an aquired brain injury and a spinal cord injury.
    Ive found more clarity of thought with various high quality supplements. 
    These include Gingko and Ginseng amongst others.
    B12 is vital for me as it helps with my fatigue. 
    Also a good bioavailable multivitamin and mineral helps me too. I notice the difference when I forget to take them!

    Hope that helps a little?

    Lou x
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  • Ami2301
    Ami2301 Community member Posts: 7,942 Disability Gamechanger
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    Hi @Laine56 welcome to the community! 

    Sorry to hear what has happened. Have you consulted your GP about receiving physiotherapy or if there are any specialist neurological centres locally?
    Disability Gamechanger - 2019
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  • Pippa_Alumni
    Pippa_Alumni Scope alumni Posts: 5,793 Disability Gamechanger
    edited December 2018
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    Hi @Laine56, thank you for sharing this with us and I'm truly sorry to hear about what you've been through.

    It would be good to know what support, if any, you have in place at the moment? As a starting point, it may be a good idea to arrange a needs assessment with your local social care team to see what support they can offer. I'd also echo Ami's suggestion of discussing your concerns with your GP, as they may be able to refer you to specialist services too.
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