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. Hello there. I am glad you found this blog. I too wrote a book about CES. It is called Midnight Demon. Link is on the site, if you are interested. I am truly sorry you had to retire from your work and then be told it is all in your head. That is terrible. I too get told that, though it is more of oh no. Not your head your brain. Ya, wish I could believe that because they still don’t change the diagnosis in my record or on my monthly pain scripts. It is a frustrating condition. Feel free to email any time. There is support out there. I am here and there is a yahoo email support. I strongly encourage you as it makes you feel less alone. You are not the only one with nappies, I can assure you. Take care and hope writing has helped you. G

  2. I am in the sinking Titanic like yourself my CES
    brother. I think the cold water death would have been easier and quicker than the 24 hours of pain to whìch presently I endure. I have had CES 18 months and in that time I have turned into someone I do not know. I have tried suicide twice but I am interrupted in my effort at the last minute once by conscience the other my wife. I am a Forensic Psychologist and Criminologist as well as teacher, so I should know better. But the pain gets to you. I have a permanent SPC bladder catheter, no bowel control so permanent pull-up nappies and loss of sexual function plus use of my right leg. 471 nights over 3 years in hospital and 56 Ambulance journeys. Four major operations and I am still worse off. But the thing that hurts the most as is more debilitating than the CES is former work mates psychologist and psychiatric alike say ” it’s all in your head”.
    I truly appreciate being able to talk to you and leave this message, and I hope you will read my book due for release in January 2019. “CES – The Silent Assassin, My journey to Purgatory and death”.
    I now have the time to write having to retire 3 years ago because of CES.

    My best regards
    Dr Dale McGregor PhD, MA, BA.

  3. GC, I’ve talked (written) to you before. I had no idea how severe your CES is.Very interesting blog. I had gotten some change in my dead left foot and you said it was an encouraging sign. Still have a dead foot and have to think Heel/Toe to be able to walk, but, yes, there has been a bit of change. I can wiggle those toes which I couldn’t do before. Had to stop cutting my toenails as I kept cutting the skin on end of toe, so have it done professionally occasionally. Glad I found your blog as I just didn’t know how severe this CES can be. And two surgeries? Hmmm. Maybe I have more to “look forward to.” But I don’t have the pain any more since my surgery –L4 and L5–so thought myself lucky but am seeing that that can change if a second surgery is ever needed. I do wish you the best and that you will be able to find needed help for this moment in your life.

  4. Hi there, I guess it depends on what kind of pain it is. If it is a stabbing burning pain there are meds to help it but it is all trial and error. For those types of pain. I found gabapentin to be helpful but some people find it to give them fogginess and weight gain. I’ve suffered the weight gain but this is a small price to pay compared to the burning pain. I don’t take it conventionally, just 900 mg at night, give or take.

    If it is more physical pain, than maybe pain meds would be good. Though finding a doctor to prescribe them is difficult. Not many docs want to anymore because of the CDC guidelines or state laws (depending where you live). Spasms can be helped with anti-spasmotics such as zanaflex or baclofen. But they don’t always work. I ended up on ativan but then I also suffer anxiety and PTSD.

    Are you seeing some one for talk therapy? You have been through a lot and some times talking to someone does help. It might take a few people to find the right one. I’m always here if you want to talk. You can reach me through my contact page.

  5. I had my first operation in November 2014, since which the feeling in my genital areas returned (thankfully) pain was lessened (been on pain control since the op) but still little to no feeling in my left leg from the knee down. The past 3 months the pain and spasms has steadily increased again to a level it was before my first operation, though the numbness hasn’t returned in my genital areas (again thankfully) but the constant pain deep in my left buttock and left leg make it impossible to lye on my left side or to sit/stand for any prolonged period 10-15 minutes max, so obviously sleep is at a minimum, if I get 2 hours i count myself lucky, but the tablets are less effective than they used to be and I’m worried about seeing specialists again as my first operation had complications but that may be my only option, but its a very worrying time, trying to work out the lesser of 2 evils, anyway sorry for rambling on but I’ve kept the seriousness of this condition from my family as i don’t wish to worry them… I have some real low days, and some very dark lonely nights (while my better half sleeps) and ending it all has been a thought that’s crossed my mind numerous times, but then i think of those I’ll leave behind and give myself a talking too… any helpful suggestions as to what pain relief works for others or things I could try in the short term just to give me some respite, I’m at a loss?? Any advice would be great, thank you..

  6. Thank you so much for writing this. You have put in too words exactly how I feel living with this. And letting my family read this has given them a much better understanding of how my life is. Thank you

  7. Hi reading your story I fully understand how you feel my daughter-in-law is suffering from the same problem and is in constant agony all the time she has a young family as son of 14 and a little girl of 4 and a half she tries so hard to be a proper mum as she calls it and make life as normal as possible for her children that is so difficult for her and no one seems to understand her husband my son tries hard to do what he can but naturally he needs to work to maintain his family and at least have the money to buy anything that might help her but he suffers as well because he feels so useless at times because he doesn’t know what to do for her and how to make it better and I often talk to him and try and help and listen and he ends up in tears like you my daughter-in-law has suicidal thoughts and I do try to help and listen and try and reassure her that although the future doesn’t look right hopefully one day in the not too distant future there will be a breakthrough for help for you all to at least live life with less pain

  8. hi, getting this twice is rare. I have had it twice. Are you in any type of physical therapy? it takes a lot of work to recover from this. it is not easy and it’s hard mentally because we want to be the way we were before and there is no going back to our old selves. there are a few facebook groups that can provide support and also the site has a much more private email group to help. as always, you can email me at collerone at yahoo dot com. I have been suffering with this condition for 16 yrs. got it when I was 25.

  9. Wow, I’ve had it happen twice now! My first time on 20 January 2011 when I suffered a L5, S1 prolapsed disc on le left side of my spine, this resulted in complete acute permanent CES, including neurogenic bowel & bladder and has since caused drop foot, complete muscle degeneration and the S1 nerve to die down my left leg completely. On 25 May 2013 I suffered a dics prolapse on the right side of my spine at L4, L5 S1, and resulted once again in acute permanente CES causing foot drop, complete musle degeneration, and the S1 neve to die down my right leg completely. I have also developed hooked toes on booth fet and Complex Regional Pain Syndrome throughout my entire Body. I am 40 years old, confined to a wheelchair most of my life and deteriorating rapidly. I am loosing hope that anything can ever be done and I am starting to think I mudt have an unknown disease that is going to end my life far sooner than I had ever thought imaginable! If anyone knows of anything thst may be able to help me, please contact me, my two boys need me!. Thanks Shona

  10. This absolutely describes me completely. It’s an horrendous syndrome, no one believes me, or understands, so I do feel completely alone.

  11. I have cauda equina syndrome. This story is spot on about the details of this condition. It is a mirror image of what I also feel. I have lost the ability to urinate on my own and cannot tell if or when I have a bowel movement. I cannot describe the sensory issues I also experience. My anal area, genital area, buttocks, feet, and lower legs are completely numb. The pain and strange sensations is undescribable. Nothing feels normal.

any thoughts?

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