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My experience of Cauda Equina Syndrome

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Rabbit
Rabbit

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

319 Replies

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  • jacqui89425
    jacqui89425

    Posted

    Hi Lynne

    I will post on here and let you know what happens..x

  • lynne14773
    lynne14773

    Posted

    Ok....I'd like to hear...Thanks...x
  • cj-c
    cj-c

    Posted

    Hi All

    It's good to hear your voices.

    I went through the process of getting a CES diagnosis earlier this year. I was lucky in having a GP that didn't just look for the obvious and a consultant who made quick decisions. The subsequent bilateral discectomy was at least partially successful in halting the loss of sensation and now all i have to do is learn to walk properly again - I remain positive and manage to go a little further if not each day then at least each week.

    My main reason for writing is, having read your stories, I realise how lucky I have been with the medical team I had - I am sorry that some of you have not been so lucky. Anyway, back to my point, I read a paper written by Gardner, Gardner and Morley, published in 2011 titled "Cauda equina syndrome: a review of the current clinical and medico-legal position"; it describes cases, outcomes and all things CES related. If you can get through some of the jargon, i would suggest it is well worth a read for those of you who went through the mill to get anything done.

    The URL is http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3082683/

    Good luck to you all

    Chris

  • julie49806
    julie49806 Rabbit

    Posted

    I have been reading your post. My Granddaughter has the same problem but not quite the same. When she was in the 6th grade she fell from the monkey bars at school. After a week or so, her legs would go numb. Took her to the doctor, they done x-rays, and MRI. I was told that they could not find nothing wrong with her. The only thing they found was that she has an extra lumbar. Okay, then the neouroligest done some test on her and found nothing wrong. They finally told me that she has Conversion Disorder. Well, to make this short. As time went on she is now 16yrs old and her legs seem to be getting more numb as time goes on. To this date I have not been able to find a doctor that actually tell me what can be done for her. If anybody can give me some advise I would be very grateful. Thanks
  • RosaS
    RosaS Rabbit

    Posted

    Hello all CES fighters!

    My name is Rosa, I'm 28 and got CES in January 2014. 

    Firstly would like to say how reassuring it is to see all of us sharing as it's such a scary and painful lifechange having CES. I've been hiding from looking on the internet until now to see what all our sharing and to also add my own contribution and journey...

    Very similarly, I have suffered years of back pain in L4 and L5, I had a disc hernia but was manageable with swimming and yoga. I also used to be a yoga teacher which helped with times of stiffness. In January 2014 after suffering a lot of pain, difficulty in walking the disc came out and gave me CES. I went numb, I couldn't urinate, I had foot drop on both of my feet and in utter agony, morphin didn't relieve any of the pain. 

    I had an emergency operation that took 4 hours. I came out and could only move my neck and arms and still in pain. It felt like my legs were cocooned in concrete with intensive pins and needles. I could move my legs and lost all strength.

    I started slowly moving and doing physio. Everything was scary and my body very weak, all muscles went and my whole body sagged. i had a cathertar in but when then incontinece nerse showed me how I would have to urniate I meditated on my bladder for 24 hours and amazingly I was able to wee the next day on the toilet. From this point I realised that the power of the mind is the most important tool that we have, waiting for nerve recovery is painful and slow so the next thing is to do is to believe and fight.

    I was sent to rehab where there was little physio, 30 minutes a day, I started swimming as soon as I was allowed in the pool. I was wheelchair bound and was learning to walk. I was discharged and could barely walk with my two sticks.

    My mother is Hungarian, she sent me straight away to Budapest and I went back to rehab/hospital. 

    The physio and movement was seen as crucial to recovery, I was doing strengthening and physio for 4-6 hours a day. Exhausting. My body started to tone up, my foot drop was getting TENS (electric therapy) and the sole of my foot still numb but there I was learning to walk. Training the muscles will also start signalling to the nerves so excercise is crucial and in Hungary they were not shy of overworking you. How else are you meant to protect your back or learn to walk without muscles? 

    The nerve pain is unbearable, Pregablin/Lyrica is the worst drug I have ever taken, it gave me the worst side effects and started to give me anxiety amongst other things too. I slowly stopped taking it and the pain remained but without the awful side effets. I started going to accupuncture x3 a week and I can confidently say that it has helped a tremendous amount with pain and now I rarely have nerve pain. The accupuncture has helped with sleeplessness, stress, anxitey, bowel function but most of all the pain. I was amazed at the results.

    I also take a complex vitamin B that feeds nerve growth and supports the nervous system, Cod liver oil and evening primrose oil. I take psyllium husk for bowel function and movement. The key is to go as natural as possible as your body is a natural shell and filling it with pharmaceutical drugs will almost always give added negative side effects. 

    The numbness in my saddle area is still there however slowly improving tiny bits each month. I wear keigal balls/geisha balls to excercise my pelvic floor and help with incontinence, I go to the gym and do physio for my pelvic floor and buttock mucles. I had electro therapy in my bum (in Hungary) that closed my weak rectum that was leaking smelly gasses, it's also helped with evacuating too.

    For my foot drop and difficulty in walking I went to the Peto Institute in Budapest where an incredible conductor has given me exercises to stregthen my feet and balance, this is still a work in progress that I measure and can see slow improvement in. 

    I'm starting to see the light and hope in my recovery. The key is to exercise, remain a certain weight (overweight/fat is the worst enemy for your spines) and to support my weak spine with muscle because the discs are now so weak. I want to be independant again, live my life freely, be able to point my toes again and stand on my tiptoes and one day have a family. For this I have to look after my spine the best I can. Exercise, breath, smile have hope and continue the fight to recovery!

    • grace101
      grace101 RosaS

      Posted

      Hi rosaS how are you ? How have life been treating you?
  • sheila08919
    sheila08919 Rabbit

    Posted

    My 24 year old Grand-daughter had an accident last year and hurt her lower back. After that she developed Sciatica . In July this year my Grand-daughter lost a stone in weight in three weeks without trying, couldn't pee, couldn't open her bowels, fell on the floor when both her legs gave way, had numbness when she was able to stand and walk, and has had severe abdominal pain which is there constantly. We have only just had her results of her MRI and one of her discs is missing!!! Well us 

    non-doctors all know where that is don't we ? but guess what A&E said ? They said she had Colic, yes you read that right - COLIC I told the Doctor to excuse me as I had to leave the room. !  There seems to be no urgency in treating her at all I am so fuming I have spoken to a Manager who is trying to get her seen quickly. They won't even drain her bladder as she is retaining urine and she had an infection but when we ended up in A&E again, they said that she probably did not have a urine infection but it could be an STI !!!!! Her GP had tested her urine and given her antibiotics for it but no-one wanted to listen at A&E. I was not with her that time, and perhaps just as well because I think I really could have lost it. I can only say that never being a materialstic person I wish I could win the flaming lottery and bypass all these so-called  NHS Doctors - at least she would get instant care.

     

    • keith94082
      keith94082 sheila08919

      Posted

      The disc might have gone to the bottom the spine where the all the nerves branch our like a horse til that why is call caudal equina in Latin horses tail.she needs at least a catheter that goes through the left middle of the tummy. That's what I had first my was done with urgently in a ae. I was about to go bang lol. All my thing I end up with where after the urgent back surgery. If she as this done it will feel better at least. My catheter was changed ever 6 week but after 2 years the infection in it would not go so I end up with a I leal conduit wee bag. I think she should take legal advice plenty of good firms out their. I am the worse caudal equina established syndrome I have a colostomy a wee bag I have no bladder I have had a massive hernia operation I am anemic I have a bleed they are trying to find also I have a incisional hernia which as to be operated on. All this would not have happened if I had the urgent back surgery instead of being turn away and only after I was admitted and scans were done. It was urgent I was rushed in the middle of the night to a neurological unit. Where I was operated on straight away. I miss my old active life had a good job played golf. I get about but in pain the numbness is like when u wake up u have pins and needles where u have laid on ur arm. That feeling never goes away my right leg when stand gos dead with out warn. Back pain is worse now then before the operation. Hope she does get the right treatment.
  • keith94082
    keith94082 Rabbit

    Posted

    I was not so lucky. I was sent home from hospital after being sent their with a gp letter. I was one that if they had operated I would have had a lot better outcome. My nerve conditions got worse wee 1st I had a cat her for that then my poo I could not feel to go colostomy in the same year I at to have a I leal conduit a permanent wee bag. My right leg goes dead completely I had loads of feels. I have a stick I use. I was expected to end up like I was. My nerves never joined in the right places. Funny I see my surgeon a week ago my last mri scan shows the whole spin as degeneration changes. He said they thought I would not walk again . My disibility is worsening. . Still I will be ok
  • keith94082
    keith94082 Rabbit

    Posted

    I was not so lucky. I was sent home from hospital after being sent their with a gp letter. I was one that if they had operated I would have had a lot better outcome. My nerve conditions got worse wee 1st I had a cat her for that then my poo I could not feel to go colostomy in the same year I at to have a I leal conduit a permanent wee bag. My right leg goes dead completely I had loads of feels. I have a stick I use. I was expected to end up like I was. My nerves never joined in the right places. Funny I see my surgeon a week ago my last mri scan shows the whole spin as degeneration changes. He said they thought I would not walk again . My disibility is worsening. . Still I will be ok
  • Drama_Queen
    Drama_Queen Rabbit

    Posted

    Dear Rabbit and others in this forum.  I've never joined a forum before but after reading your comments, felt compelled to join in and see if anyone can offer me some advice.

    Like many of you I have suffered back pain (anything from a dull ache to severe) for a number of years both in my back and down my right leg and foot  I have previously been treated with phsyio and a steroid injection all of which did the job.  Over the past 6 months the pain returned, intitally as a dull ache but has gotten progressively worse.  In the past week, I've have noticed numbness in my saddle area (which comes and goes) and some (not always) diffiuclities passing urine or stools.  I visited the physio who did some work on my back but was concerned about the difficulites passing urine etc.  I visited the GP (actually saw the Nurse Practitioner) who prescribed me stronger pain relief but also said that if i had another episode of numbness or difficulties weeing then to go straight to A&E.  That evening, although i had a few more episodes of numbness, I was able to wee ok.  During the night and as usual I was in a lot of pain from my back to my feet and when I got up in the morning found a slight difficulty weeing but could but whilst showering noticed that had hardly any feeling down below.  I went to work as normal and looked up information.  I decided then to go to A&E as the 'permanent incontence' scared me.  I was seen very quickly at A&E by an on duty GP and then referred to an Orthopedic Consultant there and then.  By this time my numbness in my saddle area had gone (but not my leg which is almost persistent).  After many tests it was decided that as I didn't have full bladder loss and that most of the tests were positive (there was some slight things such as reflexes) that I could go.  I am now awaiting an MRI which they said would be requested as urgent but this could take several weeks.  I've been given advice about when it would be an emergency - such as full bladder loss or pain in both legs not just one etc.  My concern after reading all of your posts is that I could wait for the MRI and in the meantime develop full CES and take the same journey as some of you.  I know what a Drama Queen I am, hence my nickname, so I don't want to over-react but I think now I truly believe that I have early symptoms. Any advice would be welcomed.

    • grace101
      grace101 Drama_Queen

      Posted

      Hello drama queen,

      I dont think you are being a drama queen at all

      From what i just read scared me because 3 days be4 my surgery i lost all feelings from my waiste down however i was still able to urine a little but it was not normal. I saw my neurologist on monday gone and he told me the time it takes for your nerve to become damage it take trible the time for you to recovery. Nerve growth take a really long time and if it gets damage really bad there is a possibility that it will never regain full function. I hope you get to do your mri soon and i do hope you feel better. Ces as i found out is very serious and a life changing experience. I pray you get help real soon. One more thing the advice you got to know when it will be an emergency my neurologist told me that those sign is when it is too late so if you can really get it check out be4 would be really better for you cause ces is no joke it can really break you down and make you depressed. Can you please let me know how it goes with you. 

  • kellymarie83
    kellymarie83 Rabbit

    Posted

    Hi iam 4 days post surgery to remove l5 s1 and decompression I was just wondering how long it should be before I get any feeling back in my genital/anal area I never lost the feeling of needing to use the loo just the ability to feel it when I did go and still have no proper feeling to the touch either which has not changed

    Thank u for any help u can give me x

    • grace101
      grace101 kellymarie83

      Posted

      Hello kellymarie83

      i am so sorry that you are going through this. I too am also going through ces .however i cannot give you a difinite time period it will take be4 you get any feelings back in your gentials areas.

      It has been 2 and a half months since my surgery for decompression of 2 pinched nerve in different places in my back and i am still numb in my rectum area and behind both my legs from my buttock to my heels and at the side of both my feet.

      This is a very trying experience in my life and your that i would wish on no one . Since getting ces i have done alot of research and what i can tell you is that no one has the same recovery time, i have learn for some it takes years be4 seeing any sort of progress so i guess is all about time and being really strong and having hope and faith that you will one day feel whole again to cope with ces. I would like to follow up and support you in this trying time in our lives so if you would like and you can do the same for me. Just let know

    • Artist46259
      Artist46259 grace101

      Posted

      I've had ces since 2005, and yeah the damage done and recovery time differs from person to person. But it's a medical emergency, and the sooner you get operated on, the more chance you have of making a recovery, or at least retaining nerve function. Mine was pretty bad, though I tell myself it could have been worse.

      I went through the whole process of denial, anger, depression, acceptance as I slowly adjusted to the new reality. It just takes time. I won't go through my whole history, which I've mentioned on another ces thread, and maybe women wouldn't feel comfortable talking about sexual function with a man, even if he has ces as well...

      but someone mentioned their GP recommending weight loss: if you have damage to the ce nerves controlling the bowels / bladder, then reevaluating your diet, and controlling what you eat will make a huge improvement to the quality of life. At the same time, weight loss will take a lot of the pressure off your spine and hips, and make walking easier. It'll have untold benefits to your state of mind and self perception. 

      I don't eat or drink sugary stuff at all. I can't drink steamed milk, generally speaking lower fat diet, higher protein but little or no red meat, vegetables..and so on: typically I'll have breakfast-bowl of alpen lunch-chicken deli wrap and crisps or banana, dinner-stone baked chicken pizza, along with coffee and pepsi max lol.

      Anyway I started going back to the gym once a week, just 30 minutes on the cross trainer (which is a low impact excercise, important for spinal injuries). And at home I have a bench on which I can lie down and lift weights. But the reality was my diet was enough for two people. Maybe my body had needed it to rebuild muscle, bone, cartilidge, and nerves.

      I beat my sweet tooth, had cold sweats for a few weeks, until I was free of my addiction to sugar. I then set myself a calorie target of 1800 per day, and stuck to it, learning to accept hunger pangs as part of the process. When I was hungry, I knew my body was immediately going to start burning through the fat. The pleasure in seeing two pounds drop every week is incredible. Anyway, peak weight 22 stone, 44 inch waist. Now: 13 stone 13 (target 12.5-13 stone), muscular physique that was hiding under the fat, and a 34-36 inch waist. 

    • grace101
      grace101 Artist46259

      Posted

      Sorry i took so long to reply but i will diffenitly try the weight loss idea anything to help cope with ces. I have been having a really hard time and alot of pain in my feet and pelvic area but the pelvic area is due to a anterior wall prolapsed that i got from straining to pee i would advise anyone who has ces not to strain to pee. So now i have 2 issues to deal with but each day i get up and try my family has been really supportive but at time i just break down and cry it is really hard not knowing if you will ever be whole again. Ces is pretty new to me i am almost at my 3 months after surgery and you are telling me since 2005 that is 9 years. I feel for you and everyone who has to live with ces . I find it really hard cause i have 2 small kids 4 yrs and 6 yrs and i hardly get to spend time with them, but they are my reason for finding strenght everyday. Do feel free to talk to me anytime.
    • Artist46259
      Artist46259 grace101

      Posted

      Hi. Weight loss and a healthy diet and lifestyle make a huge difference. Also, I think if you're finding it really hard to pee, and doing yourself an injury, then you should maybe ask your GP about self-catheterizing. The fact that you can still pee is good. Not good that the strain is causing injury though. Self-catheterizing is incovenient, requires extra care regarding hygiene in case of UTIs and injury if the catheter isn't inserted carefully, and because I have no choice, I can't pee at all, I find the whole thing humiliating...but...I can't live without them. If peeing is causing the anterior wall to prolapse, then self-catheterizing will solve that completely. Stay strong grace 101. It takes a few years to adjust, and make changes to your life that make your life easier, but you'll get there with the support of friends and family.
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