Anyone have Cauda Equina?

Thanks, Luckygirl3.

I had a similar operation many years ago, so I know how you are feeling. Yes, disintegrating spines are not 'a good thing'!

I hope I receive an appointment soon but feel very much more reassured that life isn't necessarily going to become pear-shaped in the immediate future.

Just reading some of the posts here has been extremely helpful.

Thank you for your contribution and may I wish you a speedy recovery.

Thank you, cornergran. I am pleased to read that your condition has even improved somewhat. I hope that the pain further up your spine will also dissipate or improve soon.

We had a holiday abroad booked but as I am immunosuppressed we cancelled last week and booked in the UK instead. I have now checked hospital locations (to our holiday location) and a daughter has just rung with nearby-ish hospitals which have a neurological department - not many, actually! I now know where to go should the very worst happen whilst we are away (it probably, hopefully won't but at least I am forearmed).

I am sure that you are correct in your submission that 'they' read us the riot act on the possibility of cauda equina developing into paralysis and probably quite right too, as I probably wouldn't have understood the possible gravity of this condition. However, I can see that although we need to be aware of the awful possibility and know how to act accordingly, people do carry on with their lives as normal.

It is such a relief to read this information and I will be eternally grateful to those who have bothered to volunteer relevant information.

Thanks, pearl79, for your suggestion of making a list of questions to ask.

You don't know me (we must be on the same wavelength)! I arrive at a consultation and whip out a typed list of questions, one for the consultant and one for me (together with a trusty pen and I have a back-up pencil, too.....).

Poor consultants! Some visibly blanch but others say they are pleased as this approach cuts time on waffle and misunderstandings. The only problem with this is later trying to decipher what it is I have actually jotted down!

I will try to aim for a wait and see approach and won't panic, particularly as the lovely ladies on this forum have advised that surgery is not always necessary.

Many thanks for taking the trouble to contribute, I am very grateful.

I have just had a discectomy - this spine degeneration lark is such a pain. I suspect that this is just one of several spinal problems, including in my neck.

I am sorry that you have this worrying diagnosis and hope that the spinal surgeon will be able to reassure you - and that the appointment comes through quickly.

An MRI triggered by our MSK team (muscular skeletal interface) came with dire warnings and a call from my GP which was frankly scary. Her final advice was to always make sure I knew where the nearest A&E was. After a very speedy appointment with spinal neurology at the beginning of last year I came away with better understanding of my particular issues candelle and a more balanced view. It was a very pragmatic and down to earth session which took the fear away. I just carried on living my life with an awareness of when urgent intervention would be needed. Thankfully it hasn’t been. A review a month ago showed some spontaneous improvement, focus has now shifted further up my spine to try to ease pain there. The warnings reiterated at my last appointment were couched as a gentle reminder ‘just in case’. It occurred to me that while this is scary for us as individuals it’s not actually that rare. I’m sure a neurology appointment will help ease your worries and hope it comes as speedily as mine.

So, you're going to see a neurosurgeon, and get their opinion. That sounds like the perfect solution. My only suggestion, which you probably do anyway, is to prepare a list of all your questions and preferences, eg to "wait and see", so they can explain what they're recommending and why ... gives you a chance to make a properly informed decision, and if you need an op, at least you'll know that you need it.
I wish you the very best of luck, and hope this appointment is booked for very soon.

Tanith, you have made my day!

Your 'watch and wait' approach is exactly what I hoped to read (although I couldn't articulate the words so succinctly). Particularly the 'wait' bit!

Just like you I have had spinal surgery and sciatica but as I am not numb and have very little pain, I couldn't but help wonder if immediate treatment was paramount. If in agony, I would bite a surgeon's hand off for an operation but at the moment, not so much, as the current parlance says!

Fingers crossed I don't see a bored surgeon......

Many thanks for your response.

I have had back surgery for nerve impingement in the past and suffer with Sciatica a few years ago I noticed I had a numb feeling in my ‘saddle’ area not really any pain although I often had low back pain, so I went to my GP. I was sent straight to A & E and had X-ray then MRI as they suspected CE. They decided to wait and watch with instructions to go straight back if anything changed.
Thankfully the numbness abated very slowly and after about a month it was gone. I do hope yours improves and you can go back to doing what you love.

Thank you everyone who has responded (I was amazed to see that CES was as well known). It was very kind of you all.

I had an MRI on Monday and the staff advised that I would hear from my GP within ten days (which I interpreted as 'there's not much wrong with you, you malingerer)'. Yesterday the GP rang after trying to contact me 'urgently' (that was my first clue that something was amiss!).

Without too much detail (I have been given a copy of the Radiology Consultant's report), I have blah blah L5-S1; L2-L3; L3-L4; L4-L5; L5-S1. Well, you get the drift!

The report ends with 'moderate to severe central canal stenosis and cauda equina bunching. Urgent neurological opinion advised.' There is more but that's enough!! My GP referred me yesterday to the neurosurgeons at a major teaching hospital so presumably I have already had great treatment with possibly more to come.

The thing is that I have had spinal surgery before when I would have jumped off a cliff had I not been able to find a surgeon (it was August and many were on family holidays!) because of the agony. It was truly horrendous. However now, I have very little pain and only wrote in to my GP after three months of having 'fizzy feet'. The GP had me in for a face-to-face consultation, consulted a local hospital neurologist who suggested an MRI and it has escalated from there.

Most of you who have responded have been in agony (as I was with my original spinal problem) but I have only very slight back pain now.

I have read up on Cauda Equina and do understand that if I have symptoms I need to treat it seriously due to the risk of paralysis (and other horrible attendants). My GP has given me a CES card (Cauda Equina Syndrome red notification card), together with a copy of the MRI report to give to a hospital/ambulance people if I need to call them. This is what has really put the wind up me.

I would quite like to carry on 'carrying on' and wonder the chances of my problem actually going the extra step into full blown CES. I did ask my lovely GP but she couldn't quantify it.

Obviously we are all different but I wonder if anyone has had a similar diagnosis and not needed treatment (i.e. surgery)? I have had many operations and have umpteen health conditions, the last diagnosis being last December (and oh, was rushed into A and E one month ago due to another health problem when my GP called the ambulance - I didn't!) so I am reeling a little from this new one. I must have been a mass murderer in a past life!

I would love to continue with normal life; gentle walks, slow cycling, cooking and going on holiday etc., which seem eminently do-able at the moment as I am not in any great pain and feel as fit as I can be: I am reasonably well and am coping with my various bits and bobs (health problems - Gawd bless the NHS!).

I will do what I am told medically but without the pain there is no real impetus to stop doing, well, everything really!

Has anyone been in a similar situation or knows of someone who has been able to get on with life, or am I being really really stupid hoping that nothing will change for the worse?

Apologies for the length of this reply.

Regards and thanks.

Katek What an awful experience for your daughter. I hope she continues to do well.
Oopsadaisy1 I am sorry to read of your experience of CES: I hope that you continue to go onward and upwards.
Aggie I know if I have symptoms I have to act swiftly, thank you.
Blue Sky and Callistemon21 If I have symptoms I now know that I need to reach A and E quickly. Thank you, both.
Georgesgran Yup, you're correct, I was sent for an MRI! Thanks.
Pearl79 Thank you. My post above gives snippets from the Radiology Report of the MRI.

What I "know" is only from the internet, but can you give us any more info?
It looks like you should be getting immediate surgery, if it is indeed cauda equina. Have they ascertained that for sure? Or do they think it's something that might develop that way?
I'd be the last person wanting to panic unnecessarily, but it does really look as though this is an occasion to push for immediate action, rather than to sit tight and stay passive.
I wish you the very best in making progress with a proper diagnosis and treatment.

PS, took 2 years before I got the feeling back in my foot and leg and was able to drive again.

I had this and an emergency MRI, dosed up with Morphine, admitted straight away and an emergency op.

It is an emergency - my daughter has CES. She was rushed in to A &E in agony 12 years ago after a bulging disc ruptured. She had emergency CAT scan followed almost immediately by a laminectomy And decompression surgery. She has been left with sensory and neurological deficits which she has worked very hard to overcome. The surgery needs to take place asap, generally within 24 hours, in order to give the nerves the best chance of recovery. There are a number of red flags you need to look out for Candelle. loss of sensation in the saddle area and difficulty/inability to urinate being chief amongst them. Should you develop either of these symptoms you must call 999 immediately. I cannot stress this enough. Sorry I’m not being more reassuring but I’ve seen at first hand just how serious this can be.

Perhaps the OP is going for an MRI to confirm a suspected diagnosis or rule it out?
Otherwise it’s acute and an emergency.

I didn't know the name of this until now but a physiotherapist did explain to me recently that if those symptoms ever occur, go straight to A&E.

I thought that was an A&E emergency?

I have no personal experience of this , but the sooner you are seen the better the outcome
I knew a woman who had this and she had surgery , it did help , I just remember that the surgery was urgent, I have lost touch with her so I don’t know how she is now