My experience of Cauda Equina Syndrome

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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