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Cauda Equina Syndrome - any advice or experiences?

waynuswwaynus Posts: 46
Hi All,

Some of you may remember my previous posts or not re: a huge L5-S1 discectomy and decompression for cauda equina symptoms (now confirmed post op by another hospital!)

I wanted to find out from other patients with CES on other symptoms or similar they experience post op..I know people suffer in different ways due to the level of damage and other factors.

I have seen a neurologist who confirmed CES due to the huge L5-S1 paracentral disc bulge which had squashed the cauda equina nerves and crushed S2 left nerve..and im lucky to walk which was not a good sign as the neuro dr was shocked. I find I cannot stand for long periods of time to the point the back goes into spasms and shooting pains plus constant pain in the buttock and down the leg. My walking has deteriated and now use 2 sticks to walk. Im getting huge spasms in the left inner & outer calf, the quads and whats weird is my 3 outer toes fire off and contract which feels stange. I find the left leg is like electric especially when I lie down...and sitting is not much fun either as its like an air bag of pain has gone off!!!

A year on plus after surgery Im still suffering perineal numbness, numbness in the left buttock which goes all the way down to the back of the left calf, sexual dysfuntion and now a daignosed overactive bladder.

What worries me the most is the amount of spasms in the leg and the shear amount of pain in the back and legs. The Dr's have put me on Lyrica/Pregabalin 600mg a day but i feel is not making any real difference. There is hardly any disc left at L5-S1 due to the rupture but the dr's wont fuse the L5 as it would cause more problems do the other degen discs..so I have to put up with living with chronic pain and mechanical problems.

I feel people in the UK with CES have no real support from the Health Service which may differ or not from other countries?

Sorry if this is alot to digest, just difficult to get any real answers just "CES with S2 radicupathy, chronic pain".
What tops it off I have Hypermobility.

Look forward to hear other peoples thoughts and experiences.

Speak soon.



  • I thought CES usually occur with injures higher up?

    It sounds like you have a terrible situation. I do not have any help for you, but this is supposed to be my state, they can't quite figure how I managed to avoid CES. They have also not wanted to operate on my back as long as it was stable for fear of causing more problems than they solve, so I wonder if that is your case as well?

    Scary stuff. Keep us posted on what is happening! So far the UK board members do not seem to be getting lower quality care than US board members at all.

  • Wayne

    I do not suffer from CES, but have studied it quite a bit over the years due to having disc and vertebral problems from L4 on down. I'm very sorry that you have been through so much, only to be left high and dry at this point. Is there some sort of consultant that you work with? Heck is there some reality TV show or news station that likes to do human interest type stuff? I have seen a few shows where the NHS went way out of its way to accommodate a special needs patient. I probably sound crazy for mentioning that, sorry.


    Oh I get that outer 3 toe spasm going and it is something that just stops me in my tracks. Sorry you have to put up with it too!

    HappyHBmom. I am wondering if your recollection of CES involving higher lumbar levels, is due to the fact that the "true spinal cord" ends around the L1 and L2 area. Be that as it may, CES can be along any part of the cauda equina below the L1 and L2 area.

  • Probably, I was told my injury was right at the point where the cord ends and the "cauda equina" begins, so I guess I made that connection.

  • Ditto sort of here - no injury, just crappy discs failing at the L2/3/4 level and ummm...bowel actions. I was told I didn't have it, but I am still suspect of that decision. :) Like HB, I was told it was below L1 but normally above L5. Scrip for further testing was given..hummm... Either way, not fun!

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • thanks for the postings.

    Yes scary stuff, you also sound in pain!! CES is usually the lower part of the spine (lumbar) where the nerves folk off (the end part of the spine) sadly these nerves are vulnable when large disc hernations occur or other problems such as trauma.

    From reading your text you say they can't believe you haven't got CES..so the disc material is huge then? If you do show any signs get it checked out again!!!!

    the problem was I was left in my opinion too long. I was admitted with chronic pain and tingling pain, and severe pain in the back however they cancelled the MRI then went for a caudal epidural then it went wrong in my opinion as the leg was dead, then left me for another week for an MRI then major surgery for a crushed cord!
  • Glad to hear from you.

    thanks for your well wishes..you mentioned about the toe twiching as well and then I saw your post mentioning your L4! I did think maybe my L4 is playing up as the quads fire off..its weird to explain but only its like a thunderstorm is brewing and then it fires off!

    Disc pain and related vertabral problems is painful as well..so well wishes right back.

    When I saw the nero's face drop at the extent of the nerves being squashed and then your lucky to walk is worrying. Sadly the reply is when asked will the nerves repair you get "how longs abit of string" which is not inspiring. I don't understand why the intitial surgeon didnt put a disc replacement in or fuse it due to the hypermobility or the DDD ones if it would have a knock on effect to L4 and L3? I suppose they are experienced but it doesn't help me suffering in constant pain and my wife's ear lol.

    You may be onto something re reality show etc, even a leading professor raises concerns over the care of CES patients who are frankly discarded once the operation and the stiches are removed.

    I had physio recently and waitng for pain management with a leading UK ortho hosp, that was only by me chasing my dr to get treatment as the level of physio and duration was appalling.

  • So when my quads twitch, should I suspect that rather than my meds?

    Random question, back to your regularly scheduled programming.

    Call me twitchy quads.
  • Thanks for taking the time to write.

    I was under the impression CE starts from L2/L3 then downwards, but I may be wrong...also meds have a bearing on your bowels! L5 is common for CES due to the location and branching of the nerve roots. Sacral nerves are commonly effected.

    I agree its not fun...its sad how many people on here who have questions unanswered due to Dr's spending time with patients to help them understand their condition and answer questions rather than your allocated time...hey im not a Dr.

    Speak soon. Wayne
  • Hiya,

    It really depends on your overall symptoms and what your Dr's are treating you for and with what (my opinion) if you discs are bulged it can play havoc at the site of the bulge and create problems like sciatica...it really depends on where the problems are which may define your symptoms..If you are in doubt get your quads checked out.
  • Wayne,

    Howdy to ya! Yeah my issues are the L2/3/4, specifically the L2 and L3 nerve roots. The only meds I take are Toprol (Beta blocker) and Lyrica with the occasional Darvocet thrown in for bad days. :) When I advised my surgeon (who did my neck surgeries) of my umm...accidents, all he did was order an MRI. He then said though possible, "He didn't think I had it." What's weird is Tamtam and I were chatting one day, and I can't remember the tests right off, but the ones she herself had just gone through to test for CES I did not!

    Since my *issues* are continuing, I might have my GP follow up with checking? But yes, I heard below L1 to L5 is most common. :) Thanks for confirming what I heard. *hug*

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • BotzBotz Central FloridaPosts: 223
    Been there done that…Cauda Equina Syndrome. Mine was caused by the Neurosurgeon that did my lam/discetomy L5-S1 on surgery #2, one day after surgery #1 in 1999. Apparently according to the Dr. reports: I reherniated during the night in a hospital bed. What I think really happened was he downright missed it.

    So anyway I could not urinate for 6 days without assistance (catheterization). I was given Flowmax and by the 6th day I was finally able to go on my own. I was miserable to say the least.

  • thanks for your reply.

    Re hearniate within your bed after being laid up from surgery the day before...and was you expected to believe that?? I take my hat off to you for having the 2 ops in two days! you must of really gone through it and also the added discomfort of the cath..

    How are you know after 10 years..did you suffer with pain, sciatica & leg problems?

    I know CES symptoms varies from people to people some sadly have their bowels and bladder affected but dont suffer too much with pain, vica versa or both?

    speak soon.

  • How do you find the lyrica? I am taking 600mg per day and don't find it is making a difference. The pain specialist is tapering me off morphine however the pain has gone up (which was expected).

    The CES checks I had were verbal and explain symptoms and changes (red flags), physical and neuro examination and MRI confirmation.

    If your symptoms change always tell your Dr...as you probably know anyway.

    Glad the CES disc level query helped.

    Speak soon.

  • Interesting. I don't know the current state of my bulges at L5/S1 and L4/L5, but most of the issue are caused by the state of the fracture area, where there are bone fragments impinging on the spinal cord right at the L2 area.

    I'll have to mention that when I *finally* see the new doctor this week (yay!).
  • Lyrica and I are buds!! Around 7 weeks after my last fusion, 90% of my symptoms came back. I went for a follow up with my NS, and when I described my pain and what it felt like, he said "it was nerve pain." I was barely able to function. It would get so bad I was curled up in a ball in my office!!! Within 2 days on Lyrica (gawd I sound like a commercial!! hehe) 85% of my pain was back under control! About every 2 or 3 weeks I skip 2 doses to see if there is any change (better, worse, new?). I've since herniated in my L2/3/4 and I was AMAZED at how much Lyrica was protecting me from reference that crap!! :) Me 150mg 2x a day.

    You're on 600 a day? The pamphlet states that anything over 300 hasn't proven to be anymore affective? The level I am at works great!

    As for CES, I am still suspect. My NS has been doing my pain management, diagnosis follow ups as well. He sent me back to the land of Neurologist to see exactly what is causing my Neuropathy and other issues, then whatever the recommendation from there, I will return to him for plan a, b, c? Diagnostically, he only MRI'd me when I brought my issues forward. Mine are bowel vs bladder issues. Sniff... Keep in touch Wayne! *HUG*

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • BotzBotz Central FloridaPosts: 223
    At the time I had no idea what happened. I was in so much pain and totally doped. I really had no choice but to go back into OR. They took out the cath the next day and wanted me to go. I couldn't so every 4 hrs or so they did a sonogram to see how full my bladder was. When it got to a certain point they would come in and drain my bladder. This went on for 6 days because they wanted me to keep trying to go on my own and I couldn’t. After all that I recouped and had been fine for almost 6 years before problems started again.
    In 2006 numbness, tingling and pain again. I had a PLIF L5-S1 same level. It was bone on bone. I was good for 6 weeks then pain returned. I have been fighting nerve pain for three years. My last surgery was done wrong as I only have rods and screws on the right side of my spine making my left side unstable. Pinching a nerve again. Another great choice of Neurosurgeon. I had numerous ESI’s with no real success. I have a spinal cord stimulator which doesn’t cover the intense nerve pain. I saw a new Neuro, he thinks I need my fusion completely redone properly.He ordered an L5-S1 ESI to see if the surgery would help and guess what totally pain free right now!

    Whoo hoo! I’m so thrilled right at the moment I don’t know how to act. I’ll see how long this lasts before I decide how to proceed. PM says he can do more ESI’s but if they don’t last more than a few months its just a band-aid.
  • My L5 ruptured and my L4 was torn and herniated, I was paralyzed from the waist down with no bowel or bladder function. After the surgery I still have bladder problems as well as those that control my arousal. My entire right leg is numb and its hard to move my toes it makes walking a task that can be interesting. The doc told me with the injury I had I should never have walked again because of how the cord was compressed and for how long but I can and do pretty well some days.
    Live one day at a time and do it with no regrets. I hold my head up high with pride to the fact that i wont let my injury beat me.
    Lumbar surgery 2009
    Cervical fusion C4 to C7 2009
    Neurostimulator 2010
    Heart ablation 2011
    Lumbar fusion L4 to S1 2012 and now L1 2 3 and 4 are split and bulging.
  • Wayne,
    I won't bore you with my story, you can read it in my signature. Whats not in there was my struggle with the damage done by the spinal infection which led to my CES. 13 months after my spinal fusion, I was still a mess. I couldn't walk more than a few yards unless I used a walker. Like you my back would go into spasms if I stood too long or walked to far. I was also having bladder issues and horrible Sciatiac running down my right leg. My surgeons had released me, there was nothing more they could do. They fixed what they could but the damage was done to my C.E. nerves. I began to walk, short distances at the beginning, using my 4 wheeled walker. It took me a year but I finally was walking 4 miles a day, 5 days a week. My bladder improved and my pain became more tolerable. I will never be back to pre-infection days but I am at a point where life is better. Standing is still a problem and always will be so I try to keep moving.

    Emergency surgery in March of 2006 for spinal infection of L 2 and L 3. During surgery, discovered I had Cauda Equina Syndrome. Spine became unstable after surgery and had 360 fusion with 10 pedicle screws, plates and rods in April of 2007.
  • cassioccassio Posts: 2
    edited 05/08/2015 - 7:10 PM
    I just like to tell that my mother (who has cauda equina syndrome) is having a good progresses with electroaccupunture. Have you heard of it? http://www.ncbi.nlm.nih.gov/pubmed/21984981
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