Any one living with Cauda equina syndrome

Trace12

Anyone living with the same condition 

Tori_Scope

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? 

Trace12

Just looking to connect to with people with similar position 

tonyt

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 

widow

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.

Hannah_Alumni

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  

Trace12

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. 

CountryMimi

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 😔

Hannah_Alumni

Oh @CountryMimi I'm so sorry to hear about your diagnosis. Have you got a plan in place? Feel like you are well supported? 

CountryMimi

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 💖

Hannah_Alumni

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

CountryMimi

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 🥺🥺🥺

Alex_Alumni

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! 

CountryMimi

Thank you, @Alex_Scope