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.
27 likes, 319 replies
Emis_Moderator
Posted
I have removed the phone number and email address as these are available from your web site. Users can send you a message directly by using the Message button under your name if they wish to send you their details.
I will also ask for your site to be added to our support directory here https://patient.info/selfhelp/c.htm.
Regards,
Alan
Emis Moderator
purpleturtle111
Posted
EmmaT
Posted
CES can present with one, or with a combination, of the following red flag symptoms. The more common symptoms tend to develop suddenly and often rapidly worsen, within hours or days, in other cases though symptoms can develop gradually.
Saddle Anaesthesia:
Loss of feeling between the legs
Numbness in or around back passage and/or genitals
Bladder Disturbance:
Inability to urinate or difficulty initiating urination
Loss of sensation when passing urine
Inability to stop or control urination
Loss of the full bladder sensation
Bowel Disturbance:
Inability to stop a bowel movement
Constipation
Loss of sensation when passing a bowel movement
Sexual Problems:
Inability to achieve an erection or ejaculate
Loss of sensation during intercourse
Nerve Root Pain:
It is quite common to have a combination of back pain, leg pain, leg numbness & weakness. However, these symptoms are also common in people who have a history of back problems but do not necessarily have Cauda Equina Syndrome.
If you have any combination of the above it may be CES and urgent treatment is needed - go back to A&E and show then that you understand the Red Flags of CES - and also be aware that CES does not always show up on an MRI. The fact that you are having bladder issues is the key thing here, pain on it's own generally doesn't mean CES but the bladder problems are an indicator so make sure they are aware of this - also if you are having any numbness around the anus/genital area, this is a significant sign.
You can always call us at the charity on the link above if you'd like to talk it through.
Regards
Emma
linda42390 EmmaT
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DeeDee3407 EmmaT
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karen81972 DeeDee3407
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Ebony44 EmmaT
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angela_07973 EmmaT
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Hi Emma-
My neurosurgeon diagnosed me with a tumor in my cauda equina about 1 year ago. I have sudden and severe tailbone bone so stared some tests. I took the surgeons advise and decide to have him MRI me again in 4 months to check to growth of the tumor before we took action. He said my lowere back pain was not related the CES and more from a bulging disc. I failed to get my MRI 4 months later and continued to deal with lower back pain and tailbone issues. Over these past year I started having some urinalysis problems so went back and had my MRI. The Dr found that the tumor grew in size by only a tiny amount. He ordered me to see a neuro urologist for some tests. I had Sudden loss of urine and urgency to the point of peeing my pants. I did the urodinamics tests to see if I have nerve damage. Everything seemed to be fine and nerve damage not found but the Urologist stated that my symptoms match patients with CES and tumors. I have always had lower back pain but dealt with it. I have no current sexual distinctions or severe bladder or bowel issues other than what I meantoned. I am 38 years old and perfectly healthy. My surgeon proposed the resection of the tumor and I'm secheduled for it next week. I'm so very scared that this surgery is going to cause worse issues to my nerves and leave me permanently damaged. I feel like calling it off. I don't want my tumor to keep growing either and eventually causing problems down there.
My questions to you is: is resection of a tumor a good idea to prevent future CES issues or should the patient wait to elect the operation until they start losing sensations. That sounds bad and therefore I have decided to have the tumor removed with the hopes that I'm making the right choice. Any advise would be greatly appreciated.
natasha041190
Posted
I was in your shoes last Christmas. The important thing at your stage is to bear in mind that a lot of ces patients see significant nerve recovery within the first couple of years, it just takes time. Keep hopeful and cross each bridge as you come to it
Best wishes
shawng
Posted
With my case they removed the entire disk leaving nothing there and not sure if that is common for this syndrome or not. My doctor was the best in my area and was lucky for that (and he is two hours away). The day of surgery, I went for an MRI to see what the problem was and was rushed two hours away to the best surgeon who knew the situation and knew exactly what was wrong. I have no fusion and only had some "blood matter" put in where the disk was, is anyone else familiar with this?
Unfortunately there is not a lot of information about this online and have found that most of the info is found from the UK making it a little more difficult to find some answers. My biggest battle now is that my husband and I want to have children within the next year and am not sure how that is going to effect my syndrome. I know that my pain level has decreased substantially and that i am fine with the numbness, am dealing with sex that is just not the same, fortunately i do have bowl and bladder control back now, but am concerned because we do want to have children of our own and not sure how this will integrate with us now.
Does anyone have any feed back or experience with this? Any advise? There is no one that can relate to me with this around here and will be mention it to my doctor the next time I see him. Thank you for everyone's feedback.
les2016 shawng
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keith94082 les2016
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keith94082 les2016
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les2016 keith94082
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keith94082 les2016
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I am never with out pain but I keep going.
jade52209 shawng
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corinnesharpe shawng
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Hello!! I'm a fellow American who is brand new to this, looking for support!!