knackered, short story about Cauda Equina Syndrome

This is a Copyrighted chapter in the book Midnight Demon: My Suicidal Career with Mental Illness and Cauda Equina Syndrome. All Rights Reserved 2014. Collerone, G

Cauda Equina Syndrome: A complicated syndrome that often brings more questions than answers, more despair than hope. Questions like when will I have my old body back? Will my back/legs/feet ever be normal like they were before my injury? Will my bowels and bladder ever be normal and I won’t have to constantly think about the last time I went to the bathroom. These questions are always, if not in the forefront, are always in the back of the mind of those that suffer from Cauda Equina syndrome (CES as those of us call it). It is a neurological condition that occurs when the cauda equina (horse’s tail) nerves are compressed somehow due to a trauma injuries such as a disc herniation, fragments of the vertebrae, a spinal tumor, or some other injury that compresses the nerve, such as a surgery clamp. The cauda equina nerves ends around the L2 level where the spinal cord ends. The causes of this syndrome are many and as we have 5-6 levels of lumbar vertebraes, the different levels of damage vary. The most consistent rule is that soon as symptoms of weakness, unbearable pain, and/or loss of feeling occur, surgery should happen within 24-48 hrs.
Do we recovery after this? Anything is possible. Some of us do, some are left with permanent injury because treatment did not happen or was delayed or it was simply too late to recover. Some have seen recovery after a few months, a few years, some times more than that. Some have gotten worse after surgery as surgery itself holds its own risk. One thing that has gotten to be the never ending questions is, how do I live like this? How do I live with the pain, the never ending nerve pain that no narcotic can touch? How can I live when I can’t feel myself having a bowel movement or feel myself urinate. How can live with these dysfunctions, always in the back of my mind knowing where my feet are cause if I get distracted or am too tired, I will trip over them.
It has been eleven years since my first injury. Almost six since my second. My first diagnosis happened at level L4/L5. My second was at L2/L3, higher and more disruptive. It caused me to be where I am today, disabled to a degree that is permanent, more permanent than my initial injury. I do not know if all people that suffer CES x 2 will have what I have. I just know that I hurt, that I can’t walk more than a few blocks without debilitating pain, that I have to take meds everyday to live my life with some functionality. Otherwise I will lose my mind and be on a psych ward never to be a functioning member of society again.
The past year has been hard to deal with. I finally realized that my initial injury never quite healed the way I thought I did and so left me wide open for injury when I was hit the second time. Now while I am awaiting accommodations from work, I am doing what I do best. Writing my life story so it can be used as a voice.
By being a voice I can tell people who have been suffering with this condition that they are not alone with this. They have support in their pain and despair. We all have been through the learning to walk again, the painful spasms, the night time burning and shock pains that keep us up at night. The nights of lost sleep from the constant worry of being in pain and seeing endless doctors to find no relief or some relief. My voice can help answer the questions that arrive at each stage of recovery and when there seems like there is no recovery in sight.
It is an always constant reminder that you are not “normal” anymore. You have your good and bad days but a good day usually consists of making it to the bathroom on time or having some pain relief, even if it is for a few hours. A good day might be the day where you just collapse in exhaustion and sleep the day away because you were up all night in horrific nerve pain that just wouldn’t quit no matter how many pills you popped before bedtime. I still have not been able to find the right time of taking my doses. Though it has been a few weeks since the 2-4 am pain cycle, that doesn’t mean that it won’t be back. I think most of the time I have not been feeling too much pain is because I have been out of work the last month or so. Pain has become less but if I happen to walk too much or stand too long, I pay for it at night.
Most of the time, people think that you are fine because you don’t have anything physical wrong with you. I find that to be true because other than my foot swelling up, no one would know that my leg is hurting me so bad I can’t walk far or stand for more than 20 minutes. They might see the AFO (ankle foot orthotic) but that is what helps keep my foot aligned. So far I have not been questioned on this by anyone, but then this will be the first summer I will be wearing it. I got it in early November because I do not walk correctly due to the weakness in my foot. Instead of walking heel to toe, up/down, my left foot goes heel and swerves to go back to the toes. It has pulled my muscles and tendons so badly that when they flair up, I am in such agony, that all I can think about is killing myself. And this pain was 24/7. It drove me nuts because there was nothing I could do for it, nor was anything I was taking calming it down. I was on anti-inflammatories, narcotic pain meds, neuropathic pain meds, and still I was in bone crushing pain. All the tests, MRI and x-rays said things were normal. But if I was so damn normal, why was in so much pain??
Then there is the bouncing game where you go from one specialist to another hoping to get a new treatment, new diagnosis or just plain answers but all they can do is give you no answers and refer you to yet another specialist. My neurologist is good for this. She has sent me to a physiatrist, an orthopedic, and a physical therapist which all said they have no idea what is wrong with my foot. They have no idea what is causing the pain, be it from my back or from my foot (a mechanical problem as it turned out to be).
I have come to the conclusion that despite my many attempts to find the right doctor to see for my physical pain, there isn’t one out there. My last appointment this week was the last new doc I will see in a while. I am tired of being put through the tests and the endless questions just to be told maybe this might help, maybe not but go through it anyway. Seeing as I don’t have insurance at the moment, I say the hell with it. I cannot fathom going through something that might or might not help for six weeks and then be told, well at least we tried. Nowhere in the literature did I sign up for that. AND this is a NEW form of therapy so it might really not work at all. Not everyone is the same when it comes to pain. I don’t even fit the typical symptoms of what my neurologist diagnosed me with (complex regional pain syndrome) so how am I supposed to have confidence for six weeks, oh and did I mention this is a “drug free” program. I am supposedly weaned off my pain meds. SCREW that. I can’t function as it is without them. I can’t take a shower or go down the stairs or walk unless I take them. Living with this, Cauda Equina Syndrome, post (CESp) is life altering. Throw in mental illness and you got a time bomb of suicidality you don’t even want to think about. Most of my midnight demons comes from the pain I feel at 2 am in the morning. No doctor sees a patient at 2 am unless you are in the emergency room so of course my level isn’t astronomical at 11:40 am when I see a doctor or my psychiatrist. All I can do is shoot off an email at 2 am and tell them I am hurting. Sometimes I get a response, sometimes I don’t.
I’m done with seeing new doctors. As long as my PCP provides me with pain relief that is all I care about right now because otherwise I will end up 6 feet under. I can barely stand when I get up in the morning and no one understands. I don’t understand how the medical profession can know so much science and technology yet know so little about how to treat pain. I’m just getting fed up. Fed up and tired that no one listens and cares that someone already with a depressive condition is being made to suffer because of the “ills” of opioid therapy. Granted there are people out there who have addictions but these people can be weeded out if the physician just takes a little more effort in listening than prescribing to get rid of the patient. I still long for the day when I can page a doctor at 2 am and tell them I hurting because I really think then they will understand that I am not just some nut job but a person who is truly in pain and suffering a great deal but that day will never come. I will always be the one to suffer and as long as I do, whether it be physical or mental, I will have suicidal thoughts. I know that one day I will take my life by my own hand. I think at this point I am just too tired to even do that. Yes, TOO TIRED, EXHAUSTED to take my life, to end the pain and suffering caused by the damage of tiny disc fragments that compressed my spinal nerves for 5 long days. That was all it took to wreck my life forever. I often wonder if I would have finished my degree by now had CES not enter my life for the second time. I believe that this second occurrence is what truly disabled me, physically and mentally. I have more damage than I had before because a tiny fragment was left on my nerves for 4 days after my surgery to help me when I was losing control of my bladder. That problem was solved but then because of this tiny fragment, I was left with paralysis of my left leg, the leg that is now the vain of my existence. No one knows of this cauda equina syndrome, yet no one has suffered from it twice and been “okay”. I can still walk but I am tortured by it every day. Every day my ankle refuses to flex when I wake up and now it seems I have to take pain meds just to get out of bed and down the stairs to use the bathroom. That is if I don’t have to go urgently, then it’s screw the pains meds and go one step at a time down the stairs. This is what my life has become. Not one doctor in the entire city of Boston wants to help me. Mentally I can’t really complain. I have the best psychiatrist I could ever ask for. But medically, I do not have anyone I can truly trust. People just take it for granted that after surgery they will be ok. But no doctor deals with the aftermath of traumatizing surgery and the pain that comes with it. I am sure if I go to my surgeon today he will either want to do another one or refer me to a “pain doctor” for an injection but injections in the spine have not been shown to be useful. They might work in 50% of the patients but not all and some may even be harmed by this practice. I call it a practice of negligence.

This is a Copyrighted chapter in the book Midnight Demon: My Suicidal Career with Mental Illness and Cauda Equina Syndrome. All Rights Reserved 2014. Collerone, G

66 thoughts on “knackered, short story about Cauda Equina Syndrome

  1. I was like you claire, unable to go out on my own, it’s so hard, but keep at it.
    I think one of my main things is I get no support from anyone, my son and friends think I’ve got a bad back. Even my husband I feel as though no one has a clue.
    Anyway claire take good care of your self, and best wishes.

  2. Aw it’s a nightmare..I have depression and anxiety too.guilt ridden as I can’t even walk my little girl from school..I feel for you Julie and hope you have more good days than bad.

  3. I think I am going to need another operation, I’m really struggling with the pain. I had my first operation 18years ago, I don’t know how I get through every day. I have got severe anxiety.
    I don’t know what to do for the best.
    Best wishes to you claire

  4. I can truly relate to this.I had ces 11 year ago and had 2 emergency discetomys..I never fully recovered and was left with numbers around my bottom and private parts and constant lower back pain.2 year ago the pain became unbearable again so had another discetomys I’m left with excruciating leg and back pain I don’t sleep I don’t relax and also rely on morphine to even move..I use walking sticks to walk the shortest of distances and have been diagnosed with failed back surgery syndrome..I’m waiting for a spinal stenosis and feel like this is my last chance to get my life back..I am suffering from situational depression and severe anxiety due to my condition..I too am completely knackered.

  5. I’m a new CES patient in the UK and have had a nightmare as no one seems to know what CES is. Please guide me in the right direction as I’m really struggling

  6. I had surgery for CES 3 weeks ago. The catheter makes me feel like I’m not a girl, the poo’s/lack of poo’s and discussions about poos drive me to destruction but the pain in my hip (which the physio’s say is habit) is agony. Pure agony. Love and hugs to you x

  7. Iv bought the book as I to have ces and depression for 19years now. As I get older the pain gets worse, I don’t know how to stand the pain most days. Not much understanding from family and friends, so I have no one to turn to.

  8. I am now at my breaking point with CES and don’t know what to do. My doctors want to do a colostomy surgery now. Isn’t my life messed up enough already? I have never been in such a dark place as I am now and it’s been 12 yrs since it happened. I don’t know what to do.

  9. Well I know the pain I have got it all so ces and pain is big but try say off all bad pills as it just don’t work after a bit I cam off all pain killers and have only 2 panafen plus in morning if driving don’t take 2 one hour be4 bed u will sleep I do get some sleep but good 4 about 12 hours

  10. hi there,

    is he having any other symptoms? Like back pain, increased numbness, etc? If he isn’t, then I say his bladder is returning, though in a weird way, but then. having CES is weird. I would have him start wearing diapers to protect himself from accidents. If he is having increased numbness and back pain, leg pain, etc, GO TO THE ER. He might be getting CES again. I would also talk to your urologist about this. They can do urodynamic testing to see if function has returned. best of luck. Mike

  11. Hi, my husband has had CES for 5 1/2 years now. He uses self catheters to go toilet. Anyways, the past two or so weeks, he has been having a feeling of needing to go and when he gets to the toilet it starts to come out all over the place, this is without using a catheter. Could this be a good thing? Could he be getting better? The past five years, he hasnt been able to urinate without a catheter. I have been trying to google stories of nerves healing after so many years, but I couldnt find anything? Please help if you can : )

  12. Yes feels like a broomstick up myass all time shit coming out all times and dirty pants gotta be careful what I drink alcohol a nono licorice a nono fingers up backside all time cleaning finger wiv toothbrush catheter 3x a night to empty bladder farting nonstop inmost awkward places can’t move without farting can’t lie down without ass ache legs like jelly electrical spasm on ankle funny gait with limp lower back aches et etc

  13. Oh my gosh! After my supposed age related spinal degeneration coupled with arthritis continued to become more and more debilitating, I did some more googly research. I’m almost positive I have this as well. What were the injuries? I had a compressed vertebra at age 18 after a car accident. No problem! I just endured the back brace for a few months and kept on going. Years later I received a hard kick to my coccyx. I kept on. Long story of course, but now I have severe pain in both legs and my lower back. My bladder function is getting worse and my energy is gone. I have insurance which will be effective March 1st and fully expect to need an MRI and surgery. I haven’t read everything here, but am worried about surgery. How in the heck do I find anyone I can feel confident of??????!!!!!

    I’d like to mention here also, that after suffering from recurring depression (with hyperactivity) from about 6th grade on, (I’m now 63) I have finally beaten it! You may send me a message for my information, (no religious debates please!) but it is based on Matthew 16:19. And I will give unto thee the keys of the kingdom of heaven: and whatsoever thou shalt bind on earth shall be bound in heaven: and whatsoever thou shalt loose on earth shall be loosed in heaven. Someone hands you the keys to a kingdom, it must be pretty important, so I’ve often pondered on this. Add that to Ephesians 6:12, Put on the full armor of God, so that you will be able to stand firm against the schemes of the devil. 12 For our struggle is not against flesh and blood, but against the rulers, against the powers, against the world forces of this darkness, against the spiritual forces of wickedness in the heavenly places. 13 Therefore, take up the full armor of God, so that you will be able to resist in the evil day, and having done everything, to stand firm.…

    The moment I feel that misery called depression sliding into me, I bind, rebuke, and a few other things. It usually takes about an hour for it to go away, but ever since I started doing this a year or so ago, it has ALWAYS dissipated in an hour or so. It’s hard to do, too for some reason and the longer I wait to do it, the harder it is, but it ALWAYS works and now it’s coming at me less and less often!

  14. you wrote that article so well . it was so well written and such a good read . i too have cauda equina syndrome and it effects every aspect of my life . i go through everything u go through . kind regards rach from nottingham uk .

  15. Hya just read this blog. And ive had caudi equina twice in 2 years. I also have the same proplems. I cant get out of bed till meds kick in. When they kick in i still struggle. If i go out. Within a hour my ankles are swelled up and im in agony all night.i cant strieghten my left leg so i walj with a really bad limp. Ti go upstairs ive goto hold banaster and drag my self up. To go down stairs ive goto walk side ways with my back against the wall. One step at a time. I only had my suergery this 2nd time 2 month ago. They said physio will sort all my problems out. As your story is so very near mine i now dont know what to think. If you want a chat at anytime email me on

  16. Thank you for commenting. Sorry you have this condition as well. I know it is not easy to deal with. But you still have plenty of time to recover. It takes years to heal so don’t give up hope. What you can’t do today, you may be able to do again someday. MC

  17. What a perfectly worded piece. Thank you for sharing this with us. I have ces and nearly 4 years on, my life has gone as I knew it. Every sentence resonated with me and how I feel on a daily basis and it is hard to explain what on earth ces actually is, and you have worded it so well. I have very little feeling in my left leg and have to now use a walking stick and a leg brace when I go out. I just get exhausted when going out, and am really unable to hold down any sort of full time work due to the pain that I am in even after driving or walking a short distance as I end up in bed for 1-2 days after any such activity. It is amazing how this disability affects us in so many unusual ways, and only after meeting other ces sufferers through an amazing charity over here in the UK, was I able to put the dots together and realise just how bad my own condition had affected me, and how badly treated I had been for such a long time. The after care that I received was pretty dire and I only got physio 5 weeks post op, which inevitably lead to my recovery being delayed and this is where they discovered that my left leg had very little strength to it, along with some other ces related issues. I was totally lost and found out about ces on the internet, as the hospital just carted me out 3 days post op, with no explanation, notes to read or after care. The date of my emergency surgery after 4-5 weeks of having many red flag symptoms was Friday the 13th August 2010.
    Thank you again for sharing your story and keep it up:)

  18. gawd sounds so much of what my hubby is going he went 2-4 weeks Compressed, has foot drop, about 4 different types of pain, he has had bouts of passing out autonomic dysfunction,goosebumps,sweating etc scary. We have a good NeuroSurgeon at least but the Family doc useless tool. hes the one who misdiagnosed it as sciatica. and said to wait til it got bad before going off work. I d love to sue him, to this day the doc says if he doesnt wet himself or soil himself then the b and b is not a problem, and who cares is his mentality,,, it drives me crazy, we need a new doc, my hubby has one kidney, do not need it damaged from back up,
    anyway, just wanted to say good read .. awareness and education is improving. On CES. finally uere its considered Spinal Injury for disability purposes woohoo

  19. this comment breaks my heart, my grandpa was in pretty bad shape too and I know how hard it is to see a loved one suffer so much. I hope your fathers sufferings ends soon ❤

  20. You are so interesting! I don’t suppose I’ve read through something like that before.
    So wonderful to discover somebody with a few original thoughts on this topic.
    Seriously.. thank you for starting this up. This web site is something
    that is required on the web, someone with some originality!

  21. The loneliness of suffering the results of a condition, which aren’t polite coversation, is often intolerable. My frequent “Oh’ I AM sore today.”s are ignored by the family and the guilt of unintentionally depriving hubby of nookie for two years often overwhelms. Mind you, if I do manage to walk a few metres, it’s in the style of a trained chimp holding his hand.

    I try to look on the bright side – I have more time to crochet (???). I too am on antidepressants because the tears of a clown are never far away. I laugh and joke about my ill-timed farts, my catheters, my mobility scooter and the fact that I always have a seat in a packed pub. Inside, I’m crying. If I didn’t laugh, would I get any pain relief. I’m afraid the answer is ‘no’ and so I carry on smiling, laughing and making friends in spinal injury support groups and through being a committee member of the loca football disabled supporters’ group.

    Those of you with the results of CES, I urge you to join Facebook support groups. I belong to The Cauda Equina Syndrome Association one. It has members all across the globe. It’s comforting for me, here in England, to be discussing the problems of CES in the heat with a ‘friend’ in Florida!!!

    I am very fortunate. I got CES at 53. I have older children, who also have their own problems, and a husband of 25 years. We struggle, he lost his job and is my carer. But, I try to smile (mostly), it’s the only way to feel worthwhile – by making others smile too. Good luck to you all – hope to chat on the Facebook groups. 🙂

  22. I too had CES and know the constant pain, sitting, standing, lying down and the pain of bladder/bowel complications. I’m just messaging to at least take one worry away. A friend of mine is quadriplegic and has no movement from the neck down. He is the natural father of two teenaged lads.Medical intervention can help with this. I hope that one day they can take away the sensation of having a pineapple wedged in your bowel!!! Good luck x

  23. I suffered CES due to post operation a micro discectomy gone WRONG BIG TIME
    . HAD A TOTAL OF 5 various operations on my spine L4/5 . Two Wallace implants in the
    Disc space idea to jam open the vertebra to reduce the pressure on the HERNEATED DISC
    HOWEVER. First op was done October 2008 , implant life was to be 25 years it failed after 6 months next op done 4 months later in 2009 , another FAILURE , the NEUROSURGEON
    NICKED , ! Cut the CSF FLUID SACK AROUND THE SPINAL CORD . I WAS 2 -3 hrs revived
    post operation , only to have a massive pain in my head then shoulders , that’s as much as I recall
    I passed out due to the CEREBRAL SPINAL FLUID LEAK DUE TO THE CUT MADE BY THE NEURO BUTCHER . At this stage 1 hr post op I PASSED URINE MANUALLY ,,,,,!
    CATHETER IN TO MY PENIS UP INTO MY BLADDER . NO ONE TOLD ME WHAT HAD HAPPENED , ,! As after a time of Grilling Dr and staff I was told I would be tested for manual
    MY TUMMY IMPACTED ALL BOUND UP , ! I was very sick from a infection due to the BOWELL IMPACTION ,! So I lived with this for a 14 months before I needed another surgery
    Wonderful informative Dr . So he found in the NEWEST MRI S &CT SCANS MY VERTEBRA
    PATCHES , still in pain lying down sitting standing ever minute in pain for months before
    Within controllable levels . I am left with CAUDIA EQUINA SYNDROME . FOR REST OF LIFE
    ……………. SO TO EVERY ONE WITH CES Y O U A R E. N O T A L O N E .

  24. I гeally love your blog.. Excellent colors & theme. Did you build this weƅ sie
    yourѕelf? Please reρly bаck as I’m attemptinǥ to create my
    own websіte aոd want to learn where you got this from or
    just what the theme iѕ named. Tɦanks!

  25. It’s so nice to see that I am not alone in this. I am a 24 year old girl and I was diagnosed with CES on April 15, 2013. I had my emergency surgery and I thought I was out of the woods, but it is now December and I still have bladder control issues, and now my entire right leg is dead to me. My Dr. doesn’t have time for me anymore. I call in for an appointment with him, but he just has the nurse call in prescriptions of pain killers without taking one look at me!

  26. Outstanding post however I was wanting to know if you
    could write a litte more on this topic? I’d be very thankful if you
    could elaborate a little bit more. Appreciate it!

  27. Hello, you used to write magnificent, but the last several posts have been kinda boring I miss your great writings. Past several posts are just a little out of track! come on!

  28. My 88 year old father sufferers from CES and cannot even take pain meds because he would have to go into a nursing home, because he would no longer be at all ambulatory and he also has brain damage that makes it hard for him to even use a wheelchair. So he sleeps all the time, moaning in his sleep, and it is such agony to see him suffer so, knowing that he is in unspeakable agony all the time. Sometimes he asks me about how he could end his life. I don’t know what to tell him then. I don’t think he is even capable of doing that, physically or mentally. I really hope he does not have to suffer much longer. It makes me wonder if there really is a God, if a poor old man has to suffer in this way. Thank you for writing this post. I’m so sorry that you are also suffering.

  29. I agree wíth You it is a practice of negligence , I had an emergency surgery on Feb,20,2013 been with lower back pain since June 2012, Recovered my bladder control but my rigth leg & my back still Hurts, my feet is always Frozen, my Dr. Only give me more pain killers & antimflamatories, the surgeon only said to me just go back & see your family Dr. Omg i’am fustrated with my condition. It is like a never ending nigthmare story and never wake up. Canadá and the Universal Healthcare System is a Joke.

  30. Sorry to hear of your pain. Thanks for posting, it’s helpful and so important to know you’re not alone dealing with the medical profession who like you say just pass you from one person to another without any real help. Let us hope that in time CES will be better understood and we will not be treated like it’s all in our heads! Pain is pain and I cannot think of any rational reason why a person would tell the medical professionals they are hurting and finding life difficult if it were not true but in my experience and being an iatrogenic patient, I have basically been hung out to dry. Positivity and strength of mind will keep me going. Good luck to all who suffer like us and keep well.

  31. As a fellow CES sufferer, I applaud your highlighting of this medical condition. Yes: it is important to let people know they are not alone. 12 years ago I was a fit, healthy male, going about life like anyone else. Then, due to a whole range of potential triggers (back surgery, cortisone injections, delays, etc.) I ended up with both CES and Arachnoiditis. Like with any medical issue like this, the outcomes fall in a bell curve, and it would seem that I am at the wrong end of the bell curve. I cannot walk or even stand. Without serious pain medication, I am unable to function. Because I have been a wheelchair user for 12 years now, I have ended up with other problems (I have had 2 shoulder surgeries on both shoulders, I have damaged nerves in my elbows, I have increasing oseo-arthritis in my upper limbs, and decreased bone density in my lower limbs). I have to take morphine 3 times a day, every single day – I cannot miss a single dose. I have had to spend all my savings on adapting my house, my car, and my life. I am unemployable, and had to start a new career, self employed. I had never suffered from any particular mental (or physical) illness before – that changed too, as I experienced severe depression, and got very, very close to suicide. If not for the circle of friends I found through CES…and several particular very special people I met through the CESSG support group, then I would not be here.

    While these conditions are basically untreatable for the time being, it is vital that the person has access to 2 things; support from others, who understand (and that rules out almost all trained clinicians IMHO), and also adequate pain relief. The second is so important; without proper (opiate) pain relief I cannot function. I know if I was not fortunate to have an understanding medical team, who are prepared to prescribe what is needed, then I would not survive.

  32. Its such as you read my thoughts! You seem to grasp so much about this, like you wrote
    the e book in it or something. I think that you could do with a few
    p.c. to force the message house a bit, but other than that, that
    is magnificent blog. A fantastic read. I will certainly be back.

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