Hi, my name is MAGGIEMO1! I have myelopathy, myelomalacia, and stenosis — Scope | Disability forum
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Hi, my name is MAGGIEMO1! I have myelopathy, myelomalacia, and stenosis

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MAGGIEMO1
MAGGIEMO1 Community member Posts: 3 Listener
edited October 2021 in Aids, adaptations, and equipment
Hi everyone I'm new, I have myelopathy, myelomalacia & stenosis, injured my neck in 95 was told I fractured C/3 vertabra transfered to neurosurgery hospital treated as spine injury patient, send home 4 days later told I had sprained my neck and what other hospital thought was fracture was a congital rib, I never recovered after attenting neuro for 23 yrs looking for a cause, I got recalled due to invedtagation in to a Dr, now told I had the above and last week been told I won't have surgery as it could make me worse, I'm starting to get frightened, it turns out a mri scan I. 2006 had said I had ischemic changes due to spinal cord compression, now I have also been told I fractured my c/2/3 vertabra in 1995, so I've never had surgery 


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  • janer1967
    janer1967 Community member Posts: 21,964 Disability Gamechanger
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    Hi and welcome to the community and sharing your story with us 

    You have been through it is there anything they can do now to help 

    Feel free to join in or ask any questions 
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  • MAGGIEMO1
    MAGGIEMO1 Community member Posts: 3 Listener
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    Thank u for the welcome, I go to private phisio which helps me with my mobility, but I'm now at spinal injury unit & orthopedics  if the operate it could take away the mobility that I have, so there just going to watch my progression if compression develops again they will do surgery but not until then 
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  • janer1967
    janer1967 Community member Posts: 21,964 Disability Gamechanger
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    It's good you are being monitored and fingers crossed you get stronger 
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  • MAGGIEMO1
    MAGGIEMO1 Community member Posts: 3 Listener
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    Thank u 
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  • chiarieds
    chiarieds Community member Posts: 16,103 Disability Gamechanger
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    Hi @MAGGIEMO1 - & welcome to this friendly community. Thank you for joining & saying a little about yourself. I'm sorry for all you've been through, but hope the physio is helping & that you can be helped further without needing surgery in the future. :)
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  • Cher_Alumni
    Cher_Alumni Scope alumni Posts: 5,741 Disability Gamechanger
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    Hi @MAGGIEMO1 and a warm welcome to our community. Blimey, you have been through it.  I'm sorry to hear about the missed diagnoses; if you wanted to explore taking this further then I'd recommend getting in touch with your hospital's Patient Advice and Liaison Service (PALS).  

    I absolutely understand you being apprehensive but it's good the physiotherapy is helping with your mobility and it sounds like you are now being carefully monitored  :)  

    You might find some of the stories shared in our Physical impairments and mobility issues category helpful to read.  While also, feel free to browse our recent discussions and take a mosey into our virtual coffee lounge where conversation is relaxed, varied and light-hearted.  

    If you ever have any questions, please let us know.  I hope you have a nice week and looking forward to speaking again soon.  
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