Undiagnosed and rare conditions
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Hi, my name is K_9 - Cauda Equina Syndrome (CES)

K_9K_9 Member Posts: 1 Listener
I'm new to this environment so please be gentle!  
My problems started when I had Cauda Equina Syndrome (CES) which is the compresssion of nerves at the base of the spine.  The compression was caused by the L3/4/5 disc having protruded and fragmented causing paralysis down my left side. On top of this the vertebrae had grown abnormal bone.  First operation was back in January 2014.  This was a decompression and micro discectomy.  Unfortunately I was not operated on for 8 days after the symptoms had occurred which it is widely known that 48 hours is the critical time to be operated on.  The upshot is that I suffered permanent nerve damage and have been diagnosed with spinal stenosis and spondylitis.  A few weeks ago I underwent a second decompression this time to my right side.   Since the operation I have lost more power to my legs and sporadic numbness in both legs.  I'm down to around 70% power and now have to more around slowly with crutches.  Constantly in pain.  Have to have help in most day to day things that I never used to.  Due to the delay in treatment in 2014 I have been left less able to do the everyday simple things I used to do without thinking.   Now with multiple aids to assist me I feel less of a person than I used to due to the fact of needing help to do the everyday simple things like dressing, getting in and out of the shower and the big one being driven around when I was always the one that drove everyone else.  It's taken me 3-4 years to accept my limitations and accept help when I need it.  Of course I still have my days where I feel useless and suffer depression regularly.  But on my good days I can accept my lot for what it is.


  • steve51steve51 Community champion Posts: 7,175 Disability Gamechanger
    Hi @K_9.

    It's great to meet you & I'm so sorry to read your email 

    Yes I'm also suffering from a NHS medical procedure.

    I had my Brain zapped with "Radiation" that went horribly wrong !!!

     Please please let us know if we can help you further with anything ????
  • Sam_ScopeSam_Scope Member Posts: 7,732 Disability Gamechanger
    Hi @K_9 welcome to the community!
    Senior online community officer
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