My experience of Cauda Equina Syndrome
Posted , 103 users are following.
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
mikefitz2185 Rabbit
Posted
Hi I've got a real bad disc between l4/l5 pressing on my nerves, and the past couple of days the pain down my leg is unbearable and it hurts when I got to the toilet these are all new symptoms? Do you think this is the start of CES?
Thanks
Mike
sandypants1964 mikefitz2185
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mikefitz2185 sandypants1964
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Hi sandy
I'm waiting for an operation should be soon hopefully, I've had the "normal" pain for a while but this new pain is something I've never had, it runs from my back exactly where the disc is out down my leg, when I try use the toilet I get awful shooting pains, even morphine not helping now 😫😫
sandypants1964 mikefitz2185
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Good luck Mike. My surgery was over 20 years ago. I had a lamenectomy. I use wheelchair for distance, wear AFO braces, I self cath to pee and elected for a colostomy. I use a cane everywhere else. So the earlier it's all taken care of thr better of you are. Mine was unfortunatley done much too late. I'm sure yours will not get to that level but I wish I would have taken my pain much more serious. Keep me posted.
mary52415 Rabbit
Posted
My daughter is 16. She went from being an athlete to using a crutch to walk and a catheter full time as her bladder is paralyzed.
I'm getting no where with the children's hospital in St Louis and they procrastinate testing even though she is getting worse. She has all the symptoms of CES and the neurologist thinks it's in her head even though the autonomic testing they have done is coming back with abnormal results. This has been going on since May. Can you point me in the right direction?
maryanne45 mary52415
Posted
Hello,
I am sorry to hear of this. I had 'slow' onset and was losing ability to urinate - bladder retention, numbness in saddle and numbness in legs. I had a microdiscectomy and laminectomy and have not lost further function, have a (mostly) functioning bladder and walk 'normally' if not very far and tip over sometimes. I live with daily pain and cannot bend or lift. Things like weight loss have not fixed it. But my pain is managed & I do well compared to others here.
Has your daughter had a lumbar MRI? Has she been screened for brain / nerve disorders such as MS? Arachnoiditis is a disease that can share traits with CES. Timely surgery helped me, might have helped more if it was earlier. If there is still nerve connections it can come back. If your not happy with the care your recieving and have not had an MRI then get one. Mine showed only as a disc problem that did not go into spinal cord area. After surgery the nuerosurgeon commented my nerves exiting spine were branched and the CE compression were understandable. Only my physio and GP believed me. I paid for the surgery. It has saved my quality of life. Good luck.
emma1508 Rabbit
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Hi. I have the same thing I still have my catherter in at the moment. I go to the hospital tomorrow and having it out. I'm so scared I'm not going to be able to go for a wee by myself. How long after you had tours out did you pass urine?
maryanne45 emma1508
Posted
Hi ,
I was lucky and did not have one. But still have troubles that have slowly lessened over a two year period with bladder and bowel. It gets worse when there is any inflammation or I over do it.
There are people on this thread that have had the experience and various levels of recovery. Have you had decompression surgery yet? Nerves are slow to 'grow back' and recovery from CES it seems over a matter of years sometimes. There are some other good forums around for people going through recovery where you can talk about these very personal issues with people that are going through similar. Are you having sensations in this area? Are you getting support from family , physio etc to best make your way in your 'new' body? Best of luck in recovering functions.
kimandbud Rabbit
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HI Rabbit! My name is Kim! I've had 3 back surgeries so far this year and ever since the first one on January 26th I've had absolutely no control over my bowels or my bladder, everything in my genital area is completely numb!!! I have to self catheterize myself every 4 hours and I have to digitally remove my bowel movements! The surgeon who did my first 2 surgeries is the one who screwed me up!!! He kept telling me that it would just take time to regain feeling and have control again! Most nurses, physical therapists, and other doctors told me that I should have had feeling back within 72 hours of my surgery! This surgery was supposed to be a 2-4 day stay in the hospital and at least 3-4 months of not being able to left anything over 5-10 pounds! I ended up have 2 surgeries within the first week because when the surgeon did the first surgery he pinched the main nerve going down through my left leg into the fixture and I was unable to even get out of bed!!! He waited a week before he decided to go back in and move one of the screws! That still did not fix the inability to go to the bathroom on my own! I was in the hospital for about 2 weeks and spent another week in a rehab facility! I also have constant pain, tingling, and numbness in both of my feet and leg! I ended up getting a second opinion and he order several tests to be done. I had a CT scan with a mylogram (fun, fun), an NCV, and an EMG done on y legs. The CT scan showed that I had cauda equina! So I ended up having a 3rd surgery on May 19th. Nothing has changed since the 3rd surgery, my surgeon is afraid that the nerve sack at the base of my spine was pinched off for too long and that the nerves may never regenerate and chances are I'm going to be like this for the rest of my life!!! I'm only 44 years old and I should not being going through this kind of crap!!! I'm unable to have sex because I have no feeling, I wake up almost every morning soak and wet because I peed myself, and I'm afraid to go places for fear of soiling myself!!! It's extremely embarrassing and degrading!!! I'm extremely depressed and have major anxiety attacks! I get constant UTI's, I can't stand and walk around for too long because my back starts hurting and my legs start to get weak and wobbly, and I can't sit for long periods of time because my feet start to swell and start tingling and hurting really bad!!! Do you by any chance have any advice??? Thank you so much for taking the time to read my reply!!!
Vampgirl Rabbit
Posted
I know this is a very old post from you, and I don't know if you're still around on the forums as this is my first time here. I have joined another spine forum where unfortunately it seems a bit of a clique, with long standing members supporting each other while new people are ignored. I'm aware people are probably not online right now very much with Christmas, but even a few weeks ago my 1st post didn't elicit more than 2 replies, one of which was from the forums admin, and looks like a standard reply to all new members. Anyway I will get to my actual point of why I'm replying to you lol!
I have been having gradually worsening symptoms for over 2 and a half years now. With cervical and lumbar issues as it turns out. I had narrowed my own symptoms down to being either MS or something in that kind of area, or a spinal issue. I absolutely knew that I was suffering nerve pain and other symptoms of nerve damage, but I have many other health issues, some of which can cause some of the other things that made me consider MS. Also after insisting to my GP last year I be referred to a Neurologist, despite repeatedly being told by various drs in the practice that it was just wear and tear, or I was misunderstanding what I was reading it wasn't what I had and so on, the Neuro dr I saw then because of symptoms I was unaware of (such as upward nystagmus, which is a movement thing with your eyes which can indicate MS), he wanted an MRI doing. Due to unforseen circumstances I didn't get to the appointment, and major mess ups by the hospital has meant getting seen again etc has taken a year!
I had just had an MRI to check for MS, a week before I had to beg my gp to see me (of story!), who sent me to the hospital straight away.
Have to say I have never been moved from a&e reception, straight up to a ward, been seen so fast by a dr, and had morphine given with no messing about.
My GP suspected Cauda Equina, the dr at hospital explained its very rare etc. He said I'd need an MRI, so I said I'd just had one, unfortunately that was in another hospital and they can't access the report for there, but I also had one in May after being admitted with worsening muscle spasms, and electric shock pains up and down my spine. I was never told any results, just after a few days sent on my way.
He looked at that one, did an examination, which revealed unbeknown to me that I have barely any feeling in my big toe on my left foot. I already knew from the Neuro appointment that I have absolutely no ankle reflexes in either leg, and reduced knee reflexes.
Turns out that the MRI in May showed a curvature of the cervical spine, which has led to Notalgia Paresthetica, which was yet again a self diagnosis before seeing the neuro last November, and he gave me the official diagnosis after completely agreeing with me.
The MRI also showed a bulging disc at L5, with L5 S1 root impingement. Saw the consultant next day, he said I needed to another mri, may need emergency surgery, that was it.
Was never given any result of the latest mri, after over a week of not seeing any dr at all, the consultant came in the morning, smiling, and said there was nothing else could be done and discharged me.
He was meant to be making a referral to pain clinic, we had to ring up to see how long I'll be waiting for an appointment, as a result many phone calls later trying to track the dr down to ask why he'd not done it, I spoke to his secretary, which raised some concerns, as she asked if he'd referred me to a spinal specialist, I then looked him up online out of interest, and even if I paid to see him privately he's a knee specialist, and only does knees! Ironically that didn't mean when I saw him with my right knee 3 years ago he was any better!
I have many of the red flag symptoms, in the saddle area constant tingling in the left side, and reduced sensation to touch. Sat which is hell anyway, it can spread to the entire area and start going down my right leg into the big toe. I am lucky my lumbar spine itself is achey but not painful, it's my leg especially my hip and, and this is one of the of the only things which has caused Notalgia
My symptoms are getting increasingly worse, and for other reasons I can't go back to my gp, the drs where l isam atm able to do anything, so my life is just miserable. Tramadol, diazepam, and nefopam just take the very, very edge off.
I find walking so hard, that despite reading keeping going is the best thing, I am really, really struggling to do so.
I have several red flags, and am just so miserable that I don't know where to turn.
I have started wondering does cauda equina always show on mri scans, and came across this post.
I hope you are still around and about on the forums? Sorry for the essay, and any mistakes, keep falling asleep, 18.5 hours in 7 days is obviously coming back to bite me in the rear end lol.
Hope to speak with you soon. Merry Christmas
Ebony44 Rabbit
Posted
Wondering the same thing can you have it even if it didn't show up on mri
jerome09112 Ebony44
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kelli55164 Rabbit
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Hello,
I was wondering how you were doing now? I was diagnosed with CES in October after emergency back surgery. I have numbness is my saddle area and one foot and back of both legs. I do have to wear a pad for urine accidentso if I cough or do anything strenuous. I hate not knowing if this will get better or not, as everyone is different with this. I just thought it would be nice to reach out to someone for support and encouragement. Let me know if you're interested. I'm Kelli, 41 yr female.
Thank you!
Kelli
jerome09112 kelli55164
Posted
Hi just reading your post I had my operation 3years ago and still left with crippling pain in back and legs drop foot in my left leg ,both feet are numb my leg right one shakes in controlbly I have loss of Ballance problems and water problems sexual problems and bowel problems I have to use a cane to get about can't walk very far and this is 3 years and still going on
emma1508 kelli55164
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keith94082 kelli55164
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Dear kali
I had my op in Aug 08. I went till Jan 09 then went into having a urgent subscribe catheter. With my bowel I completely stop going properly in Oct 11 then ino jan12 I had a colostomy. My bladder was getting to many infections so the at to do a ileal conduit a wee bag . They left my bladder in but in Feb 13 it went septic so the lost was removed that op took a lot out of me.
The point of this is try to Carry on. For as long as u can with the bladder weakness. I am 1 of the worst cauda equine established syndrome to be disabled as well. I am staying in a assessment unit for 2 weeks in March to see if I am suitable for Neroumodulation surgery. The put a disc and battery's it's attached to ur nerves to ur lower half it breaks up the pain signals to ur brain if it works I can easy off my tablets.. I keep fighting but I get very down I am now seeing a physiological person it helps. I try to enjoy my life my last major operation were in July 15 I had 2 in a month new stoma revision an hernia operations as well my scar goes from above my public bone to in between my chest area I have no belly button. Still their are a lot worse off then me. I u win ur battle.