Neurological conditions
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Hi, I'm 2LoobyLou and I have Cauda Equina Syndrome

2LoobyLou2LoobyLou Member Posts: 1 Listener
Hello, I'm Jo 

12 months ago I had emergency spinal surgery for decompression (I thought I had a bad back), I wasn't expecting surgery! I was then taken to theatre again the next morning as I had no feeling in my right foot.  Long story short, I have Cauda Equina Syndrome and have no feeling below either knee, have lost sensation from the waist down. I wear an AFO.
I am struggling to 'like' the new me and accept all that I have lost.

I thought I would say a quick hello and I'll be back shortly!



  • chiariedschiarieds Community Co-Production Group Posts: 9,222 Disability Gamechanger
    Hello @2LoobyLou - Welcome to the community, & thank you for joining, Jo. That must have been quite scary, but at least your Drs. recognised Cauda Equina Syndrome.
    I have a genetic disorder, so I've sort of grown up with it, but it was still difficult when I kept on worsening that bit more. I can well understand that rather suddenly finding yourself in your situation isn't easy to adjust to. It's not easy, but you are still the same person, & tho it can take time to accept 'the loss' of what you were once able to do, now is the time to see, & celebrate, what you still can do.
    Thank you for sharing about yourself, & I look forward to hearing more from you. :)
  • OxonladyOxonlady Member Posts: 412 Pioneering
    Hi @2LoobyLou, what have the neurosurgeons said? Are they going to operate again?

    I had Cauda Equina, they didn't operate in time and now nothing below the waist works properly.
    I can't have any more operations (nor do I want any!) as I have other chronic conditions.
    I'm not in good state currently, due to have another MRI Scan on my spine next week.

    How are you dealing with pain?
    I've been housebound for six years and I can't say that I'll ever get used to being confined or limited. I try to make the best of things but, again, I don't know that I'll ever get used to being disabled and needing a Carer. Though I'm very fortunate, my Carer is kind, helpful, supportive and reliable.
    Have you had a Care Needs Assessment by Social Services? 
  • Ami2301Ami2301 Community Co-Production Group Posts: 7,754 Disability Gamechanger
    Welcome to the community @2LoobyLou and i'm sorry to hear this. It is difficult adapting to a 'new you', my life was turned upside down 4 years ago when my health was rapidly deteriorating. To this day, I still struggle to accept different things but I've come to realise there will be good days and bad days. We're only human after all.

    Pace yourself and take your time, I know it won't feel like it right now but things will be OK :)
    Disability Gamechanger - 2019
  • janer1967janer1967 Member Posts: 11,205 Disability Gamechanger
    Hi and welcome on board 

    Sorry about how you are feeling and what has happened 

    I can empathise as many can about how hard it is to adjust 

    I lost my leg after developing sepsis was told it had to go to save my life and the next day it was gone no time to think about it 

    Its took time to adjust but I have . I think now of what I can do not what I cant 

    We are always around to support and help you 
  • Tori_ScopeTori_Scope Posts: 5,039

    Scope community team

    Welcome to the community @2LoobyLou :) Many of our members have mentioned struggling to adjust to life with an impairment, so you're certainly not alone. I can see you've had lots of wonderful replies already, so please do pop back on and give them a read whenever you're ready. 

    Give us a shout if you need anything! 
    Online Community Coordinator, she/her

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  • Caz_AlumniCaz_Alumni Scope alumni Posts: 626 Pioneering
    Hi @2LoobyLou

    Just wanted to stop by, say hello, and welcome you to the community :)

    Thank you for telling us a bit more about yourself and sharing your experiences. As you can see from the replies that you've already had to your initial post - and as @Tori_Scope has said as well - you're certainly not alone. I hope that you enjoy getting to know the community a bit better and speaking to some of our lovely members, as time goes on.

    Look forward to chatting with you in the future :)
    Online Community Coordinator (she/her)

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