Any one living with Cauda equina syndrome — Scope | Disability forum
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Any one living with Cauda equina syndrome

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Trace12
Trace12 Community member Posts: 4 Listener
edited June 2021 in Rare, invisible, and undiagnosed conditions
Anyone living with the same condition 
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  • Tori_Scope
    Tori_Scope Scope Posts: 12,492 Disability Gamechanger
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    Hi @Trace12 :) I don't remember any recent discussions where someone has disclosed that they have Cauda Equina syndrome, but we do have a few members with spinal stenosis, which I understand is a similar condition?

    Are you after any specific advice, or just wanting to connect with people in a similar position more generally? 
    National Campaigns Officer, she/her

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  • Trace12
    Trace12 Community member Posts: 4 Listener
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    Just looking to connect to with people with similar position 
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  • tonyt
    tonyt Community member Posts: 7 Listener
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    Hi trace12,
    I suffer with pain around the top of my left leg, also my left ankle gets pins and needles,
    It comes after walking or standing worse towards the evening,
    I am told its lumber spinal stenosis.
    Presure on the nerves in my back, because its only one leg suggests its where the nerves exit the spine if it was in the central spinal column it would effect both.
    I believe if the condition gets worse and actually damages the nerves then it may become cauda equina syndrome.
    Not 100% but thats how i interpreted it.some years ago i went to doctors with a throbbing pain i kept getting around my big toe it would come and go randomly right the doc said it was a trapped nerve in my back.
    She gave something to calm the nerves and i have not had it since 
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  • widow
    widow Community member Posts: 1 Listener
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    Hi Trace12, I was diagnosed with cauda equina 4 years ago.  Had emergency surgery so I wouldn’t be paralyzed from waist down.  At first it wasn’t that bad, I had to wear a diaper because nothing works down there anymore but then about 6 months later I lost my balance, couldn’t control my body temp in cold weather, lost smell and taste(didn’t get civil that I know of) and now I have a constant UTI because every time I cough, sneeze etc I poop.  I’ve become a recluse because I don’t want to smell like **** and I go thru abt 6-12 diapers/day.  I’ve also wet my pants several times in public.  Life is not fun anymore unfortunately.
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  • Hannah_Alumni
    Hannah_Alumni Scope alumni Posts: 7,912 Disability Gamechanger
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    Hello @widow

    I'm so sorry you are have such a hard time with the incontinence side of your health. Do you have a specialist / consultant? or just your GP?

    I hope you come to find a sense of community here with us :)<3 
    Hannah - She / Her

    Online Community Coordinator @ Scope

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  • Trace12
    Trace12 Community member Posts: 4 Listener
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    Hi widow, I have bladder issues caused by CES , There must be some help out there you can get from your GP, I have been catheterising for 14 years now, There is a device you can use just for  your bowl  issues its called a peristeen. 
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  • CountryMimi
    CountryMimi Scope Member Posts: 145 Pioneering
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    Hi @Trace12 I was diagnosed with cauda equina & had emergency spinal surgery last year. I'm 32 and continue to suffer chronic back pain. Still under investigation, but believe there is quite a bit of nerve pain.

    Just been diagnosed with Stage 3 Chronic Kidney Disease as well 😔
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  • Hannah_Alumni
    Hannah_Alumni Scope alumni Posts: 7,912 Disability Gamechanger
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    Oh @CountryMimi I'm so sorry to hear about your diagnosis. Have you got a plan in place? Feel like you are well supported? 
    Hannah - She / Her

    Online Community Coordinator @ Scope

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  • CountryMimi
    CountryMimi Scope Member Posts: 145 Pioneering
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    Thank you @Hannah_Scope

    The Hospital are just testing some samples at the moment to see whether there's an underlying issue - I have one kidney that is quite a bit smaller than the other, which I believe has been the case since birth - I was 10 weeks premature, so I'm very lucky that this is the only issue that I seem to be experiencing in terms of that. My kidney function is at about 57%, which the consultant seemed quite pleased with. I think it should be about 90, but in July last year it was working at 43%, so it's a lot better! I'm not sure if there are any treatments that can be administered at this stage, but if it were to progress to 8% function, then I would need dialysis and possibly a transplant. Thankfully got my Mum who is amazing and has been with me every step of the way 💖
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  • Hannah_Alumni
    Hannah_Alumni Scope alumni Posts: 7,912 Disability Gamechanger
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    Fingers crossed for you with the results! 🤞 Do you know when they are due?
    I'm so glad to hear you have support from you mum :)<3
    Hannah - She / Her

    Online Community Coordinator @ Scope

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  • CountryMimi
    CountryMimi Scope Member Posts: 145 Pioneering
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    Thank you 💖 the consultant said he would arrange to ring in about 2 - 3 weeks, so hopefully they'll know a bit more then.

    I am so grateful to her and both my brother and sister have been great. My brother sent me a lovely message and my sister straight off said that she's going to get tested to see if she could be a donor if it gets to that stage. Apparently my cousin also said the same 🥺🥺🥺
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  • Alex_Alumni
    Alex_Alumni Scope alumni Posts: 7,562 Disability Gamechanger
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    That's lovely to hear @CountryMimi I'm glad you're family are able to rally round and support you :) And it's not too long until you speak to the consultant. 

    Do drop by the community whenever you need support, we're all here for you! 
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  • CountryMimi
    CountryMimi Scope Member Posts: 145 Pioneering
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    Thank you, @Alex_Scope
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