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Cauda equina syndrome Ces Help please

9 replies

goingroundthebend4 · 15/04/2011 07:31

Please is there anyone else who has or knows someone with this . This is my dx complicated by tear in the cord above .I'm scared and only now really realising just what this now means

OP posts:
TheNewStig · 15/04/2011 09:10

going, sorry i have no ideas on this but couldn't leave your thread unanswered. just seen your other thread about going to A&E or not. can understand why you're scared. anyway you can get the consultant to talk you through what's going on and the prognosis? take care of yourself.

Chaotica · 15/04/2011 21:29

Hope your toes are still wriggling (and you're feeling a bit better). How is the pain?

I haven't experience of anything as severe as you have, but I have almost completely recovered from a similar disc problem (couldn't walk, sit, stand, lie on my back etc and had some other problems) once the disc was removed. I have nerve damage, including loss of reflexes, but usually no pain. I have some leg weakness too, but you'd probably miss it if you didn't know me.

I had a lot of physio (and acupuncture) with a specialist back pain physiotherapist - where are you? (I was in London at the time and there were some very good specialists in the hospital that I was at). That was incredibly important because all the op did was take the pressure off my nerve but not teach me how to move again. Once you're able, it is important to start on gentle exercises and stick to them (obviously, ones the physio has given you rather than something you made up yourself).

I am shocked at your GP TBH (but not surprised). Glad you went to A&E (that was how I got treated in the end, although I already had a diagnosis).

Good luck - and feel free to ask further questions. (Don't google too much - I might not have been so determined (and chilled out) if I'd known what might have happened.)

goingroundthebend4 · 16/04/2011 07:31

Thank you

Ironic the will I won't I walk bit I can handle .It's the other area loss to controll or to feel anything that I'm scared about

I'm in London staring at a rather large patch of veiling that was badly painted ( someone could least drawn some pictures on it

OP posts:
LF10 · 24/04/2011 23:11

Hi I have just had cauda equina syndrome so can answer any questions!! Xx

AimingForSerenity · 24/04/2011 23:24

My knowledge is technical rather than practical so may not be much use but here's hoping.

At the lower end of the spinal cord it splits into many seperate fibres which looks like a horses tail (latin for horse's tail is cauda equina) CES has symptoms of pain and sensory changes usually caused by compression or narrowing of the spinal canal.

My father was wrongly diagnosed with this some years ago and I think I may have a medical journal about it which I could look out if you really get stuck but really my advice would be to try to stay calm and positive. There is always a tendency to panic and worry about the worst case scenarios (I'm not being funny here, I know because I do it myself!

You are probably younger and in better health than most patients in this situation so may well have a better prognosis than average. Try not to scare yourself.

darleneconnor · 24/04/2011 23:29

Can you link to other thread please?

JustCallMeGrouchy · 28/04/2011 20:36

hi just caught up with this .They confirmed that theres been so much damage to the nerves as it was acute and i lost all feelins that i will be needing a wheelchair

Knackeredmother · 28/04/2011 20:39

I'm so sorry this has happened to you. It must be such a shock and you must be feeling very angry at your Gp. Does he know what has happened to you?

JustCallMeGrouchy · 28/04/2011 20:54

yes but trouble is i have been told it can in early stages be confused ith muscular and its when becomes acute thats hen and its considered rare and once it became acute i cant fault my care.Though i think any time i heel in to the drs it be a reminder though i ill refuse to see that dr again

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