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

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.

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.

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.

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

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

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.

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