My experience of Cauda Equina Syndrome

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I thought I'd post about my experience of Cauda Equina Syndrome (CES) in case it's of any use to anyone. I'm a 30-year-old woman.

In spring 2010 my lower back suddenly became painful. It didn't get better. Over the summer I tried various things - painkillers, the chiropractor, the gym, swimming, pilates - but found nothing gave lasting relief. Towards the year end my back became increasingly stiff and sore and one evening before Christmas I fell on the snow and felt a disc slip in my back.

Instantly I was in agony. The doctor seemed to think my level of pain was pretty standard and put me on Voltarol. I carried on with work with out pain but feeling electric shock sensations down my legs every so often. When I came off the Voltarol a week later, I had the most excruciating sciatica and was almost crawling up the walls with pain. I was put back on painkillers and told repeatedly by several very kind, but essentially uninterested doctors that the sciatica would likely wear off.

After about 3 weeks I had upped my dosage of painkillers (dangerously, I later found out) to cope with the pain. My GP told me that no investigation of sciatica was warranted until I had had it for at least 6 weeks. After 4 weeks I started to have difficulty walking. After about 50 yards I would need to crouch down to get the feeling back in my legs so I could continue moving. My feet would point in odd directions sometimes, as if I had a disability. When I lay down, a feeling of coldness would fill my bottom area. I experienced some difficulty in peeing though I was still able to go to the toilet and had no incontinence until the day of the operation.

I called the doctor after a week of this and he said if I wasn't incontinent, there was no need to worry about CES. I later learnt that once you are incontinent with CES, your prognosis for recovering nerve function is significantly worse. I was in the pre-stages of urinary retention, which he didn't seem to think was at all related. He said the leg weakness was most likely muscle wasting from the sciatica (which I thought odd - my muscles looked and were behaving perfectly normally) and that if I felt coldness, not pins and needles in my saddle area, it did not sound like CES (which I'd heard about after typing my symptoms into Google and finding that unanimously, they came up).

A week later I got another doctor's appointment as my leg weakness and inability to pee were getting worse. This time I saw a different doctor who instantly realised what the problem was, tested the sensation in my saddle area which was worryingly absent (it's horribly easy not to notice that bits of you are going numb) and sent me straight to A&E. After various tests and an MRI I was diagnosed with CES with a very large disc herniation at L4-L5 and was operated on that night.

After the surgery the leg pain and weakness resolved instantly. When the nurses removed my catheter though I couldn't pee and couldn't feel anything much in my genital area. I was utterly terrified that I might have ruined my sex life and lost the ability to pee normally. They sent me home with a tap catheter to try and remind my body of what it should be doing.

A couple of weeks later I was lying in bed and suddenly felt a wave of feeling in my saddle area, as if all my nerve endings were suddenly alert. It was the most wonderful feeling as I knew it meant that my nerves were repairing and that I hadn't lost sensation here. I could feel that I needed to pee, which was also wonderful. The catheter came out soon after and I could pee normally most of the time, with a slight delay at other times.

It's now a year later. I'm often in pain with my back still. I've had several episodes where CES symptoms have come back and I've been MRIed again, showing that whenever any disc of mine in that area slightly bulges out, the nerves damaged by the first herniation go on the blink again, but with time the numbness goes away again, though it's always nerve-wracking. I pee normally most of the time but am still seeing a neuro-urologist at times to assist with this. I've currently got sciatica for the first time since prior my operation which is worrying, but I'm keeping an eye on it and will contact my brilliant consultant if it doesn't go away after a month or so, or obviously if I develop any more worrying symptoms.

The point of this essay is really to explain what happened to me, as when I got the syndrome I couldn't find details of another case quite like mine online. I hope this might be helpful to someone who is worried their nerves won't repair, because there is often hope that they will - when I was in hospital, the doctors kept telling me my nerves wouldn't get better as I had had pressure on them for longer than 48 hours - in fact 3 weeks! But they still did, so there is hope.

The other point of this story is that I needn't have ever developed this distressing syndrome had my back problems been taken seriously by my GPs. The other day I went back to the GP to get their advice about this new episode of sciatica and they said "Let's wait and see how it turns out." I think in this instance they're probably right - it probably will wear off with painkillers and physiotherapy. But this is exactly the same advice they gave me a year ago prior to my operation. If my GP had ordered a scan after my disc first slipped, or after my sciatica first started, my consultant says they would have straight away seen that I would need surgery as the herniation was too big to ever repair by itself. But they didn't think it was a big deal, and I don't like to be pushy.

And as a result of their inattention and delay I developed CES and now have permanent nerve damage.

I understand that back pain is a fact of life for many, and it looks like I'm going to be one of them. I also understand that in the vast majority of cases, slipped discs and sciatica go away by themselves. But it seems to me that whenever there is the chance of some underlying pathology that will lead to outcomes like (or worse than) mine, GPs should err vastly on the side of caution.

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  • Posted

    Hi there, I also suffer from Cauda Equina, although thankfully, quite mildly. I was operated on within 24 hrs of being diagnosed which really helped. Unfortunately I think I'm the exception as all too often diagnosis is late or missed completely.

    I am currently volunteering for a new charity which has been set up by 2 CES sufferers and a specialist nurse. The aim of the charity is to raise awareness of the condition and to find and support people with ces. The website is www.cesukcharity.org.uk and we are also on facebook and twitter. We are currently in the process of getting our registered charity number so we can really get things started. Anyway, I just thought you might like to know that there are people out there who want to support and help change things. You may already be aware of us but if you want to get in touch please do.

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    • Posted

      Hi Emma. Just joined this group and I'm finding it helpful. my names kate and I'm 25 and in November of last year 3 months ago I had surgery for ces. I suffered from severe back and leg pain for over 18 months and it wasn't till 17 months in my mum noticed I wasn't going to the toilet...I didn't even notice!! I had a mri a few days after and had surgery that night. I thought I was on the mend so went back to work full time and after now being there for a month I'm finding it difficult to cope. My back pain has come back and sometimes my right leg goes numb I saw my surgeon today for a 3 month post op meeting and they are going to send me for another mri. Does anyone else have problems in full time work? Is there anything I can do to help myself?

      Kate

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    • Posted

      Hi Kate. I've had CES for 10 years now. The extent of the injury varies from person to person, and it sounds like you've retained your bodily functions and mobility? Hopefully the second mri will show if they need to do any further surgery, and I hope you don't suffer any permanent nerve damage. I have nerve damage in both legs, complete urinary and bowel retention (which means self catheterizing and manual evacuation), some sexual dysfunction (though I can still have children). It took me quite a few years to just accept what had happened, then a few years to adjust my life into something more manageable, such as moving to a ground floor apartment, and these last few years getting my health under control (going to the gym once a week, eating healthily and losing 8 stone in weight, so that I now have an almost unrecognizable muscular physique that I'd say is better than I've ever looked pre-injury). I'm studying part time, and will volunteer soon, as the first steps in getting my career off the ground.

      I'd say the important thing is staying strong, don't let GPs fob you off, be careful about not putting intense or repeated pressure on your lower back (even sitting for too long is bad), and (assuming you didn't already) take control of your health and diet which will help the body to repair damaged nerves / generate new nerves. Vitamin B12 is important for nerves I think. 

      Charlie 

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    • Posted

      Hello Charlie. Thanks for Replying. Yes I got my mobility and bowl functions back pretty quickly and started work again. I work as a manager in a restaurant so it's pretty fast paced on my feet all day over 9 hour shifts. I'm finding it very hard to cope since iv been back and feel my pain increases daily. My workplace are not very understanding so really don't no what to do. My surgeon said that maybe a change of career would help but right now he thinks I should just rest for a bit
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    • Posted

      Hi Kate. Sounds like good advice. If the surgeons did a discectomy and / or laminectomy to remove the damaged disc or discs, or parts of the disc, you no longer have the same cushioning between vertebrae that the disc provided. Pressure or shock can then cause yet more problems. A change of career sounds like essential for your long term health. I've seen people on the forum actually experiencing a second disc prolapse, despite having had surgery etc. So you need to take care of your lower back. Your employers should be more considerate, not least because if there's a chance that the job caused the injury, they'd be open to a compensation claim that would cost them a lot. (In my own experience, though I was in the right, attempting to get compensation isn't easy, takes years, pretty much loses you any chance of returning to that job, so I'm not recommending it as such). But your employers should give you a few months off, and in that time you could think about your career options. Trust me, you don't want the ces to get any worse. 
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    • Posted

      Yes I had a disectomy and on my most recent mri I was told there is a chance that a few more disks could go. My gp has actually just called me and advised me to take 3 months off so il do that and in the mean time think of a change of career.
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    • Posted

      Glad you're taking the advice smile You're in a very lucky position that the nerve damage wasn't worse, so while taking a few months, even a couple of years, to get your health completely back on track might be daunting, its a small price to pay for avoiding permanent nerve damage and having to self catheterize etc for the rest of your life.  
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    • Posted

      Hey I am a 23 year old man. During the army service I was injured my low back and had a buldge that sometimes would press the nerves so hard. Latly I have strong weakness on the lower left leg (knee down). I am 12 hours before operation and would like to know what to except on the outcome. I have full bladder and bowel control, and sexual function is great, although I noticed that the ejaculation had become weaker. I really don't know what to expect from this operation but the ministry of defence is paying for everything luckily. I have high pain tolerance so no pain killers are needed. But again, I am not ashamed to say that it is what I fear the most that the leg weakness would not go away.

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    • Posted

      You may be lucky as you have no bowel or bladder problems . I have minor bowel and bladder problems, and saddle anastesia. Paralysis down left side of left leg. Constant pain so I’m on lyrica and amnetryptyline. Hope you have good recovery. 
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    • Posted

      Thank you for your reply. I will update you guys too. It is scary, scarier than going into battles.

      In god I trust. I will take "illegal" marijuana and not Lyrica or other drugs. High THC levels do wonders.

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  • Posted

    Hi , my name is Rose (age37) and I also suffer from Cauda Equina Syndrome , my disk collapst and the delayed treatment and operation led me to suffer from this , I m now 6 years into my legal battle : neglect

    If they would of done their job within 48 hr I would of had a better chance of recovery. Maby you should also seek legal actions

    Do you suffer from more back pain than before? I do and of course they say its not because of the delay , they say I had back problems before and therefore take no responsibility , how ever they admit to my bladder and bowle disfunktion but also dispute my numbness in my left leg and weakness of my leg which I now have support with a crutch (it gave way a few times in the past and made me fall)

    I m happy to tell you my whole story , I also have a blog on here , thank you for your time

    Rose

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    • Posted

      I did I sued the hospital for their mistakes turning me away after waiting with a doctor's letter the when I was admitted 3 days later with another gp letter. I was left in bed for another day the when I had my mri I was woken in my hospital bed and rushed blue light to a neurological hospital had a urgent back op. I also sued a urology doctor at a private hospital. I used my house insurance to get me started I used their choice of solicitors. After 5 years in February 2013. It was unreal my barrister and solicitors were at my house getting ready for the court. We my solicitor recieved a call it was a offer from the hospital we did not accept till I got to 1 million and 75.ooo I used shoosmiths. I had seen so many different experts. We thought the hospital was a lot weaker case. But the expert in AE Process. It cost alot of money my 50.000 ran out then they gave me no win. I have brought a new house which I had done for my care garage convt lot of things. I have a injury trust account. Do u need any advice. I can speak by phone.
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    • Posted

      Wow did you .. Great that you won your case although diesnt in any way make up for I'll health at all ... I wouldn't have a leg to stand on as I refused op ten years ago . Although then it was no where near as gas as what happened to me last year .. I am sure a hundred oer cent if I had had op before September ( in June ) when it started I would not be sitting in position I am now though hindsight is a great thing ..,, xxxxx
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    • Posted

      I miss M6 old life so much I was in the mod working with the police as a ministry guard. I was a fit 50 year old going in the gym and playing golf. Then on the 2. 8 08 my life changed. All these operation back the colostomy the a urostomy then bladder removal as it went septic the a a massive hernia now in 2 week I have 3 hernias my belly whats left off it will go. I have a scar from my public bone to 2 inches past my belly button. The last op was as much pain as my back. I been in hospital twice with falls. 3 months 6 weeks on my back with drains on my spine as I had a infection. Still all the people on this site have had their problems I feel for u all. I am anemic the can't find the bleed I have colostomy bags full of fresh blood I know it's the area around the colostomy that bleeds I have told them. The iron pills and liquid iron as not worked. Still their I worse off them me.
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    • Posted

      Awww my goodness kite that's awful 😔😔😔, I'm so sorry to hear this .. Your is far worse than mine ... Awful .. Yeah it's hard your life changing over night very hard .... I have been off work for nearly a year now... Don't think I will be able to do my job any more but still hope one day I will be back ( I'm a barber) ... I have no feeling for bowels or bladder however I'm trying to manage it myself back kills me and left leg numb to world but I'm grateful as you say there are people worse off I suppose .. Very hard to accept though .,, I wish you all the best of luck... Absolutely horrendous xx
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    • Posted

      Hi Rose,

      I am sorry to hear about your experiences with CES. I too am pursuing a legal case and would like to have someone to share how things go?

      I would be grateful for any advice and would gladly send back equal support.

      I look forward to hearing from you.

      Kind regards

      H x

      You can message me 07758127150

      I look forward to hearing from you

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