Slow onset CES two years post surgery. Damaged nerves healing?

Posted , 10 users are following.

This discussion has been locked due to a period of inactivity. Start a new discussion

Two years on and I'm still looking for others in the world with information to share about Cauda equina experiences. I'm currently feeling confused about whether I am experiencing permanent nerve damage feelings or shifting sensations that are healing, or both together. I know there are no easy andwers but these forums have sometimes been my way to learn personal experiences this thing that is sometimes treated only as an ER medicine problem. I tend to explain it away as a back problem myself.

When I experienced the Cauda Equina my symptoms progressed as slow onset over a period of months and then got worse quickly over weeks. I started paying attention when I could not walk and was going 24 hours without emptying bladder/bowel. I was very active in seeking and paying for surgical treatment to stop the progression when I finally accepted I had it and was operated on with a decompression surgery after a desperate search for a surgeon. My post surgery MRI showed there was still some compression and my physio agrees there is still some L5 S1 I don't have a disk with fluid in it. Over the last 18 months I have felt bodily functions moving back through numbness to tingling to now pain along with some 'normal' sensations. Have others experienced this still in the following years? I still feel very unbalanced sometimes and at these times feel like my bad leg gets very heavy and tingling numbness in my spine.This is often after I have overdone things. Has anyone else had improvement in the 3rd year or further? Or any experiences of relapse in years living post Cauda Equina. Does anyone know why it is said it can be 3 years for nerves to heal with Cauda Equina. Any comments from the brave Cauda Equina survivors out there much appreciated.

0 likes, 14 replies

Report

14 Replies

  • Posted

    Hi, I'm the same been told it's nerve damage, but like you I feel it doesn't feel right. I have strange feelings in my lower back abit like someone is pushing there. I also get a lot of truck shifts in my lower back. I also have loss of feeling in my right leg, I can walk fine but some days it feels like an effort.

    Been off work now for 2 years and recently was told I have a Myelomalacia in my thorasic spine. Which needs to be monitored, what I don't understand is after my surgery in 2013 and after the 12 weeks heeling I was great. No pain I could run like I did when I was 20. I was a new man, then 8 months latter all taken away again.

    What I've read on forums I'm lucky as some people are worse then me. But the Consultant told me he would fix me and im still suffering....it's hard but I stay positive but just don't know where my future is going.

    Report
  • Posted

    I'm over 3.5 years in. All of what you're describing sounds like the joys of the permanent damage. Are you working with a pain management specialist? Do you use mindfulness to cope with the sensations in your legs? It's an incredibly exhausting experience. Life got a lot better for me when I stopped looking for cures and started looking for better coping skills. I'd consulted spine surgeons, neurosurgeons, primary care, pain management, urogynecology, psychiatry, physical therapy...but it wasn't until I saw a neurologist at 3.5 years in, who really explained the nature of a damaged spinal cord and nerve roots, that I finally had an understanding that no matter how much I rehabbed, no matter how much weight I lost (I've lost 95 lbs), I was still going to hurt and have radiculopathy. It wasn't great news but having a better understanding went a long way toward closing the chapter of my life of seeking cures to just learning to live with it and go on in my different body.

    Shortly after my 3rd anniversary of the CES I was diagnosed with fibromyalgia (took 2 doctors to convince me of the dx) and complex migraine. I've probably had fibro for years and the migraines are hereditary. My mother developed them when she was my age (I'm 39, was 35 when CES hit me, it was spontaneously occuring).

    Hope this was helpful.

    Report
  • Posted

    I also had slow onset actually over a year. Mine presented in a very unusual way which has also left me without legal recourse. Mine started with total bowel incontinence which after a few months turned into a full rectal prolapse. I of course went to a surgeon and then a colorectal surgeon. At each appointment different muscle groups were letting go by December over a year later I finally started to experience sciatica. By this point I had rectal prolapse which I was wearing diapers for, had a rectocele which is where the bowel comes through the wall of your lady parts, had a prolapsed bladder, ballooning perineum, loss of feeling to go to the bathroom, saddle numbness. Basically my lady parts were completely foreign to me and yet there was no reason as I was a healthy 41 year old who never had ap pregnancy yet not one doctor did a diagnostic test to find out why so of course I'm very angry. Now since finally getting an mri from my family doctor I've had surgery but again that didn't go well as it got delayed another 3 weeks because the neurosurgeon didn't think it could be cauda equina because he'd never seen it present like that. Although when I went to see him I was having bladder retention he still didn't think anything of it and I of course had no idea yet that it was cauda equina because there was a shadow of secrecy about perhaps so they didn't lay blame on the other doctors. I still have a lot of pain and am finally going to a pain clinic in October and really hope to get help there. I did the same as the writer going everywhere hoping someone could correct my back because I also had a large fragment left inside causing some nerve compression. My family doctor said she doesn't understand why I still have so much pain because she doesn't feel cauda equina causes pain just bowel and bladder problems. If I could get her to read these forums she'd see I'm not alone. I experience everything from bugs crawling on my legs to toe spasms. I have bladder retention issues which are strange because I can empty it but it takes a conscious effort. My rectal prolapse resolved itself with the back surgery however I still need to get my pelvic floor lifted to repair the lax muscles. I'm not sure if the pain I feel inside is due to the prolapses or the cauda equina but I totally know that pushing inside feeling someone described which is considerably worst when I don't empty my bowels. I keep hoping to read of a miracle but there doesn't seem to be one. Hopefully I gain a better understanding with the pain clinic. Not sure if I helped but I certainly rambled on at length haha.

    Report
  • Posted

    Hi you story mirrors mine in a lot of ways .. I'm two years in too , and still suffer numbness and nerve pains , I'm inclined to think they probably won't heal much more than they have , I think they say wait three years to see how the nerves recover as they recover very slowly if at all , a lot depends on the quickness of surgery and how long prior nerves were getting damaged on how far they can heal , hope this helps X

    Report
  • Posted

    I was left with compression for 6 days still when a mir scan was done on the 5 8 2008 in the night I was whip out of bed transfered to a neruo hospital kings. I was rushed straight to theatres. I had major decompression. I was told my whole back as problems l4 l5 had bulge out and fused together they had broken off and wedge in the lower spine. I was told nerves can rejoin. But in my case not likely. My right legs is so weak at 1st I would not except I had a major issues. My bladder was 1st in Feb 09 I at to have a urgent visit to ae they made a subapubic catheter. In January 2012 in had a colostomy as the bowel stopped working . Then in July 12 in at to have a ileal conduit and a urostmoy stoma in Jan 13 I at to have my bladder removed it was septic. Then the other things I had a massive hernia removed in Dec 14. Then I had incisional hernias removed in July 15 then at the end of July I had a colostomy revision it was really done as it had got rotten wants that bled.

    It's taken so much out of me my last mri scan shows all the back as problems s6 s7 is causing me problems neck shouldst hand tingling from the neck to my finger tips plus pain. I am going to be referred back. I am going into St Thomas's for 2 weeks in their pain management unit I am have a 2 Week assessment to see if I am right to have neuromodulation surgery. It's a disc with batteries it's attach to the nerve system it breaks up the pain signals it cost 25000 that why u have the 2 Week assessment. I won damages which will help alot. I would give it all up for my old active life. The pain is wearing me down and I have lost my confidence. I stay in doors for weeks on end I get anxious when I am out.

    So I have established cauda equine. It's all the nerves that spread out like a horses tail. Mines established as these nerves got to ur muscle for bladder bowel they are damages plus all the pins needles and countless other feelings the my right leg go's died with out warning 2 major falls in the early years where I tried to walk with out a stick.

    Ur nerves would have found their way back by now

    I think u try and get the best out of a bad thing if u still have compression that is not good. I would expected the worse the pain does not stop. that the bad side now someone out their can try and give u a good feed back u asked for honesty I gave u mine Urs keith

    Report
    • Posted

      Wow you've been through a lot.....

      I had a motor bike accident when I was 17, I hit a post side on which broke my back. I had two colaped lungs and was on life support for 10 days. My back some how has a curve the same as the post which the Consultants say I was born with..which I know I wasn't.

      I made a full recovery and learnt to walk again.

      But it's all catching up with me now...

      I've aways had back issues but just learnt to deal with it. As for pain, because the pain I was in after my bike accident I have a very high pain tolerance. But I've aways asked for a full scan of my back but my doctor just said NO and in 2013 when I new there was something wrong he said it was a strain, he sent me for physio and I had to wait 3 weeks. The pain got so bad I couldn't sleep, I went 6 days without sleep. In the end the physio said go straight to hospital which I did. There is was rushed for decompression surgery on 2 discs L4 and 5. I made a full recovery and even back to work. But it was short lived and it's all back again I have disc bulges in L4 and 5. My doctor still wouldn't send me for a full MRI scan and even sent me to another hospital and there they said I was fine. But I new something wasn't right and after a fight he sent me back to Walton Centre where he did 2 full back scans and found l have myelomalacia in my thorasic spine which could cause issues. Plus this proves it was done in my bike crash, but because there are no other scans he doesn't know how it's been. So he's concerned it could get worse and there's nothing they can do. If I new this 10 years ago I could have made changes in my career.

      Since then I've Google myelomalacia and it's basically a death sentence if it moves higher or spreads can cause my lungs to stop working. I feel angry towards my doctors as they haven't Lisern to me and wasted 2 years of my life. I'm only 48 and 12 stone so not over weight, even now I keep going . I've read books on positivity, yoga and use a 10s machine. I'm off pain killers as the side effects where just as bad. Sorry for going on and wish you the best of luck.

      Report
    • Posted

      You definitely don't want to start reading about neuropathy in palliative care....

      All of us with CES have radiculopathy, our version of a diabetics neuropathy (same sensations, we don't have to worry about amputation bc our blood flow isn't affected).

      Nerve pain is very difficult to treat and manage in relatively healthy people. It's impossible to manage in end of life care.

      There's definitely more room for research in palliative care in the management of patients passing with neuropathic pain conditions.

      Report
  • Posted

    Thanks for your replies. There sure are some tough stories of survival on here. It is good to hear from others that have gone through this disease that can really just make you think your crazy until you find out what it is, then still it makes you think your crazy with the strange things the body will do. I am in my late 30's and still feel like I have living to do for me & my family, whatever the physical state thats in. I am hearing the message from longer term survivors you are still living with this maddening nerve pain & its from the nerve damage?. The sometimes tingles I have deep in my spine & leg is not just in my head. I have wondered if it were ramped up CNS response but it could be this too?. It just doesn't feel much any different to the crushing feeling I felt when the Cauda Equina really took hold and I had already lived with years of intermittent pain from another source - severe endometriosis without feeling at all like this at that point. This forum and feedback from Cauda Equina survivors has helped me. Like another comment I wish I could show a doctor these forums. I have had better insight here from hearing peoples stories than the few sparse words I got out of the surgeon that did his job and did halt my progress down that path of lower body numbness. I do use the tens, heat pads, mindfulness physchologist -more recently and basically anything non medication I can get my hands on including losing a bunch of weight which did nothing & I was not that big to begin with. I am lucky to have a GP that helps me in pain management and knew me before all this happened. They had picked up what was going on early enough to get me to where I am, even when I was still in deniel or this 'rare' thing that maybe is really not so rare? I can't yet access another pain management doctor and the only private one I have met in my area I had to educate while he looked at me with his mouth wide open. So this was really not much use. I do feel I will tip over and do sometimes stumble and fall off chairs when my bad leg still gives way. I live with the daily grinding nerve pain, timgly messages about what my bodies doing and variable bladder and to a lesser degree bowel issues. The second really did improve for me in that first year so I am very thankful of it, I never thought it would be a priveledge to poop. It has not ever got to a cathetor and of that I am also very very thankful and sorry to hear of the stories for those of you that have it. I am too proud or silly to have ever used a cane in all this but I do look at them sometimes in the shops on rainy days and car doors, public seating and banisters are my friend. I have to vary standing, walking and sitting to be comfortable over short periods of time. This is not much fun but it keeps me moving. As someone on hear with a much more brutal story by the sounds, said you can and do make the best of bad situations Thankyou all & please add to this anyone out there with your information in living longer term with the after effects of CES. I am hearing it loud & clear, it is probably ongoing nerve pain from whats happened to my major nerves from this experience. From everything I've heard we are possibly out of territory that medical science has gone yet? Thats my rant too.

    Report
    • Posted

      So I was 35 when the CES got me...I'm 39 now and had partial hysterectomy 2 months ago, I also had endometriosis. I had a DVT after the 3rd failed spine surgery so it's difficult to say if excessive bleeding was from endometriosis or blood thinner or both. I also had a lot of pelvic pain. The surgery (which was laproscopic robotic DaVinvi) has been a long, tough recovery for me. Great to not have bleeding issues but I've had tremendous healing issues. I only had endometriosis and fibro vascular adhesions on the outside of my uterus, nothing within the pelvis so any abdominal/pelvic pain that's still there I'm chalking up to the fibromyalgia and/or nerve damage from CES.

      Also, I feel you on the pride issue...I transitioned from walker to cane to my own two legs. Hard work, shear will, determination and pride. Being in my mid 30's, having 3 daughters, living in an upper middle class neighborhood in the south (the irony being we reside in the bible belt) I felt a lot of judgement but no support.

      You really have to find your own way with this. Take advice that you feel can be applied to your life, leave what can't. I was talking to my husband last night about my desperation in the beginning of all this for my old body back...that magic surgery, that magic medicine...I had 3 surgeries, I tried all the drugs...everything made everything worse for me. In my case less was more. For me now it's about trying to heal mentally from the trauma of it all and cope with how the physical interacts with the psychological. As you are well aware, nerve damage is maddening, chronic pain is grinding on the mind.

      Report
    • Posted

      Hi Kara,

      Thanks for your reply, I hear you about having the judgement without support. I live on the other side of the world to you but I guess this has been a big part of why I feel very private about the CES and was too proud to ever use a cane. There is not much point as nobody has usually heard of it.

      I have found these replies useful at this stage of post surgery and yes I (and GP) have/ had same process of looking for medical answers, physio rehabbing, weight loss and its just not worked a bit. I may just need to accept this is where its at for now and be okay with learning how to cope. I have been trying to learn more about chronic pain and the way our nervous system and mind can just ramp it up for old injuries that no longer exist? I am open to this idea and willing to try anything that might help but then half of this medical idea as the body is now 'fixed' but is having echoes of pain has just not sitting right with me and my own experience post decompression CES surgery. This radiculopathy you described above paired with the that most of my pain and tingly sometimes numb business all still tie in with funny bowel & bladder things plus rebellious spasms and sometimes numbness on the bad leg for me with the nerve damage just makes more sense. It kinda helps me let it go. Thanks for sharing what a doctor has shared with you or what you have found with the nerve pain on your way along with the CES.

      Sorry to hear you had yet another surgery. I hope it was what you needed and you are recovering well. I have stage 4 endometriosis deep on the ligaments that join to the spine in my pelvis so I know this probably does not help things at all. I think it it is a nioceptive (inflammatory) pain? I had it removed years ago and know it has likely come back but am not too keen on any more surgery right now so manage it in other ways. So I had had some serious back pain with the lower back and the endometriosis in the past but had never experienced sensations or pain scores comparable to pre and now post CES. This was from an accident that happened to me, combined with a congenital spine thing (maybe) and has really been something else. I guess it is just something we have to accept and find our way with living with the pain or like my mindfulness lady helps me try to label it 'sensations' and she is also helping me be accepting of using medication which I don't like very much either. Still I'll sure take pain over foot / leg numbness and losing bodily functions any day. Take care

      Report
  • Posted

    Hi Mayanne it has been post 2 years for me. I never regained my bladder I self catherize nor my bowels. I have no sensation in saddle area or buttocks completely down left leg into foot.My DRS only use the term spinal cord injury thats the answer i get to every question I ask. As far as I am concerned i feel somedays i can pee on my own but yet the specialist thinks my blatter its dead. But i can pee for a few days than everything stops working i cant predict which days i will be able to go but it has to mean something. Because it only starting happening in the last 6 months.Some days i almost feel somewhat normal far and in between but i will take them. I find the pain more sevre in my lower back now as opposed to down my leg and foot which that is just torture. I now get a procedure the epidermal needle in lower spine quite painful but deffinately worth it.I find it helps my hips from feeling like they are splitting apart my worst postion is laying down so i have to be heavily medicated for bed time. I just wish DRS could have caught it sooner or wouldnt be so sevre. Isuffered 6 days just pumping me up with pain killers and sent me home. Meanwhile i could not lay or stand no feeling in saddle and i thought i was wetting myself but in realality my bladder was over flowing.I was the first case of CCS here and no one knew what to do. I sure fell through the cracks. They treated me like i was in a accident and got paralzed but i didnt ! To this day I feel like i can diagnois myself better. It has been a dark couple of years for me hoping i can find the light. If it wasnt for family and friends i would not be here writing. It is just so hard to talk to people whom have never experience CCS but they mean well. i may look great on the outside and some people just look at me like Iam fine not realalizing the damage on the inside. I feel so alone sad

    Report
    • Posted

      No the feeling, each day is different for me too. But I feel people look at me and say what's up, it's because I look normal. I haven't worked now for 2 years due too appointments and treatment. But it's been a nightmare as our NHS waiting times are like 3 to 6 months. My work stopped paying me last Xmas which was nice of them and has taken me 8 more months to find out what's wrong with me. Even my own family don't even ask how I am, my wife is amazing as sees how I really hurt. I've worked since I was 15 and I'm 48 now.. and had a good job with good pay, now nothing. It all adds up the stress of it all, but I've learnt about been positive and changing your mind set.

      Plus I'm not ever going to give up no matter what, yes I've been though alot but so have a lot of people some alot worse.

      I'm off all pain killers as I find they caused a lot of issues and moved to my own program if 10s machine, stretches and even yoga.

      Core muscles are important and help keep things at bay, I even sit on a exercise ball so it builds my core up.

      I've also read if you think of back ache you you get back ache so changing your mind set does work, it does take time but I found it does work for me.

      Report
    • Posted

      I'm sorry to feel you feel alone. This forums are a good place to know you are not the only one in the whole world with CES if maybe the only one in the your area? My GP had seen it before and already had another patient with the catheter so knew it was too many red flags and told me off to believe her. The specialists ignored her and me for a time it was like a rolling roulette to find and then to travel alone to an emergency hospital elsewhere. I still cannot think aboug that time without feeling emotional. It also makes me so sad to hear of Your experiences and people that could have been helped more if medical people were more educated? It sounds like it went further along for you to where mine was going but you are describing some very identical feelings I still get now too. You said it was always just more in one leg? It is a very private thing and I undrstand what you said when people can look at you and see an able bodied person but this is not the experience of the body you are living in now. I do try to look at what I can do still and all the good things in my life past the pain feelings. Can I ask is your epidermal needle that you say helps a steroid type treatment or is it something else? I do work with my long term physio To try and work on the bladder control with pelvic floor or to just learn how to move and do light housework without straining pelvic floor including bowel. Your doctor should listen If your bladder is working sometimes something is connecting sometimes. They might not need to do something or it might not change but they should listen at least. Take care

      Report
    • Posted

      Thank you Save68,

      Very inspiring, i am a little depressed about my CES not showing any improvement, but reading your history and how your dealing with it

      is giving me hope, so keep off the meds and on that Gym ball.

       

      Report

Join this discussion or start a new one?

New discussion

Report as inappropriate

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up