Recovery from Cauda Equina Syndrome

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I wanted to share a story of my boyfriends experience with CES because I had never heard of it until he was diagnosed, I searched for information on how he might recover and read so many traumatic stories I was devasted.  I could not find any positive outcomes.

For people who might be newly learning of this condition let me share a beacon of hope when you are likely feeling quite terrified!

My boyfriend had back problems for many years, I think prolapsed discs that eventually healed themselves.  Last year he had this condition for much longer than normal, a number of months and the pain got worse and worse.  He was getting shooting pains down the backs of his legs.  One weekend he said his legs were starting to feel numb and then in the space of 2 days he lost feeling in his feet and calves.  He could not feel any sensation as to whether his bladder or bowels were full and he couldn't feel his buttocks at all.  His penis also completely lost all feeling.

At this point he went to hospital and fortunately was in a hospital with an excellent neurosurgery unit so they recognised the symptoms immediately.  The surgeon operated within hours removing the disc.  He was in hospital a couple of days for recovery from surgery but almost immediately the feeling in his bladder and bowels returned.

Once back home he was very, very weak for several weeks, really struggling to walk.  He had numb legs for a long time and even now, 8 months later, he still cannot feel the base of one foot.  For many weeks after surgery the feeling in his buttocks and penis did not return.  As you can imagine we were both very worried this could be a permanent situation.  After a few weeks he managed to get an erection and ejaculate even though he couldn't actually feel it.  Finally after many weeks the feeling in the saddle area fully returned and all was functioning as normal.

He had a very severe limp even until now and sadly that has resulted in a second prolapsed disc which he will also need surgery for but thankfully the disc is not compressing the nerves that would cause CES and the surgeon is confident he will heal nicely.  

So he isn't yet recovered from all the issues related to his back but I think he has almost fully recovered from the specific issues associated with CES and the compression of that specific nerve system.  

I hope this gives people some hope that it is possible to recover in some situations.

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  • Posted

    Thank you so much for posting this! I have gone through a very similar situation with my husband. I, too, knew nothing of this until it happened to us. Oh, the horror stories I have read as I researched about prognoses. Yours is the one positive that I've come across. My husband had surgery March of this year. He had emergency surgery within 24 hrs of onset of symptoms. We are 4 months into recovery. He still has saddle anesthesia, but he's able to walk now with a cane, on level, familiar ground without it. He's wobbly thanks to continued numbness in his feet and toes but I'll take that. There's no sensation in his penis which has him seriously worried. How long did it take for your boyfriend to get this back? Again, I thank your for the beacon of hope.
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    • Posted

      Hi Teri-mc, 

      I’m also suffering from CES and underwent surgery 3 weeks back. I have urinary retention and bowel problems as well as the saddle anesthesia. Can you please tell me how’s your husband now and whether he has fully recovered? Thanks 

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    • Posted

      I had the surgery 5 months back in Delhi and I am facing the same situation. But getting improvement in walking but still waiting for the sensation of bladder and bowel. Getting excercise physiotherapy and now trying accupuncture. Let's hope for the best and good luck for you.

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    • Posted

      Same , i had surgery 2 months back and facing same issue as you are. I can walk with the help of walker and someone's hand and a stick but still im on catheter and can't feel my stool. I'm worried and scared at the same time. I even have foot heaviness.

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    • Posted

      I have been advised by my Doctor is start walking as much as so that nerves get circulating and strengthen and regular excercise and electric stimulation physiotherapy. Be patience and take care of urine infaction if using catheter. Right now I use self catherization 2 times a day. Don't lose hope and be patience. I go through all this. The only way is trust in God and be patience.

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    • Posted

      I'm after almost 8 months from the surgery. I can pass urine with effort now. no need of catheterization. Still the saddle anaesthesia present, but improved a lot. there's slight limping when i walk and hope everything will be alright later. good luck for you too.

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    • Posted

      Thanks for asking. I'm almost recovered. I got rid of catheter and i can pass urine with strain. My urologist says I'm quiet normal. The saddle anaesthesia still persist, but I have improved a lot. There's slight limping when I walk. I can say I'm almost normal.

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    • Posted

      Good to hear and best wishes for your recovery and best of health. I am still looking forward and hope for the best. Getting accupuncture sessions and regular walk.
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    • Posted

      I am suffering from exactly same problem. kindly contact me

      so that we could help each other.

      Moderator comment: I have removed the email address as we do not publish these in the forums. If users wish to exchange contact details please use the Private Message service.

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  • Posted

    I had emergency surgery on 7/27 because I couldn't control my bladder aND was numb inthe saddle area ofor my body. I had been having pain for almost 2 years and was told it was sciatica. I have been using a catheter because I still have not regained any feeling. I walk using a walker. I know that the damage to my nerve was severe so I don't expect the feelings to come back any time soon . I just feel myself falling in to a depression because I feel so helpless
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    • Posted

      Hi, I'm Jeremy. My handle is tongue in cheek. I am wondering if you think things could have been done differently for you and if so, exactly how. I am both medical and a CES sufferer myself. My question goes to everyone really who has had an op for CES.
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    • Posted

      I just joined this site after surgery and spending several wks in a rehibilation hospital. I see that you experienced much of what I am dealing with now. I am wondering how you are doing over a year later?   My hospitalization and surgery was the day after Thanksgiving 2016. I am struggling with regaining my balance so I have to use a walker for now. My bladder and urineary track work good now, but did not work at all right, after the surgery. I continue to do therapy, outpatient, three days a week in a pool. My goal is to return to work by the end of Feb 2017. I will have a desk job till I can walk with just a cain. My employer has been sooooo supportive. I am so thankful for them. 

      I don't know if you're even on this site anymore, but if you see my post I would love to hear from you, if you are willing. Blessings

       

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    • Posted

      Before the ambulance arrived, I was on the floor for three hours, talking on the phone , and having lunch. Only my  back hurt and I could not move with out extreme pain. BUT I could move my legs, feet  bring my knees up and I was not having any trouble urinating or with bowel movements.  When the ET's sat me up and put me on a chair I heard it go. Had to have morphine in ambulance. They moved me from a house chair to their chair that went down stairs, then from that chair to a stretcher. What could have been done differently ? I asked them to drag me on a blanket to the stairs and slide me down the stairs on the board/stretcher. They did it their way and here I am CES. Lucky for me th surgeon came rignt in as he knew what it was form the symptoms they reported to him. No feeling in legs, unable to feel a cathiter. I had no feeling or movement from my waist down. That was on the day after Thanksgiving 2016. Today I am happy to report I am walking with a walker, still working on my balance, and have a slight drop foot in one foot. I am encouraged and working hard to get back to work in the next couple of months. Will still have wheel chair for long distances and walker for short. I do rehab three days a week and do exercises by myself at home, It's hard work, but it is all worth it. 

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    • Posted

      Hi Mary! Could you give me some light?

      I am L1 fracture incomplete spinal cord. My sccident was jan 4 2017. Today march 4 2017, I can walk short distances with walker. Felling on my right foot slightly coming back. I have bowel and bladder incontinence. Will I be able to feel my genitals again? Im 21 so it stresses me thinking no more sex life. Will I be able to walk again without walkers ?

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    • Posted

      I'm not a doctor, but from what I read, the sooner the surgery, the better the results.  As I said my sons occured the day after Thanksgiving. Unable to move anything from waist down. I would think, you would have the same results or maybe better as you probably were operated on right after the accident. I've read posts from people who's doctor waited for long periods of time before they diagnosed Cauda Equina and it left them in very bad shape, some with symptoms yet after many, many months. My son reports all the pluming is now working well.  I read on this site that  one gentleman sued the doctor and won. The key to my sons success is the amount of time he puts into exercising the muscles outside of physical therapy. The six weeks in the rehab hospital gave him hope, motivation and the attitude to "make it happen." He told me he does leg exercises while he is in bed, or just watching TV. When he is standing up to the sink, he does squatts to build hip muscele. He never says, "I can't" or "I don't want to." His goal it to return to work and be able to play with his daughter and wife. I have no doubt he'll make it.  I hope this will inspire you to think about what you can do now and build on that, and not what you can't do. One day, hopefully you'll be suprised by a new sensation, indicating progress towards you goals. Prayers for steady progress, for courage and determination to work hard  and most of all patience during this long process. Blessings 

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    • Posted

      It's been almost 3 years since I was diagnosed with Cauda Equina syndrome. I am a medical professional myself and believe because of the devistating effects of CES there needs to be a protocol in place similar to stroke. To many people are sent home even though they have CES symptoms. It needs to be ruled out completely as even on case of it is too many!

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    • Posted

      It been 9 years in August when I had nerve compression. I have been devasted by ces I am disabled I have a colostomy and a ieal conduit wee aroma. I have had secondary things happen I at to have my bladder removed as it was infected. I had 2 big hernia operation 1 revision of my colostomy as that went bad. I have had 7 major operation I have a scare right up the middle. I have got established causa equine . I sued for damages and settled out of court I was left for 6 days . My last Mir scan shows multi level degentive changes my neck area is a big concern. I am due to see the doctor I was discussed this month in their meeting. I am in agony I am breaking down hardly go out. I have seen the physiological person . My pain killer are starting to not work I am some time in the future going on a 2 week assessment for a neruomodulation disc they put in ur back like a pace maker. It is suppose to break up the pain signal. I have had no positive help or a back up network. I would give all the money I got to go back to my old life. That's causa equine . I read all the posts my hurt go's out to them all the younger ones have got to suffer long as the surgeon side I have relieved the compression but I can relieve the pain. I waited to see if my nerves would recover but my lower body shut down a bit at a time I had several bad falls had a infection which came from my back to my chest I spent 2 months in hospital on my back from my last fall my right leg go's died with out warning. The pains I could give u a list. Any way that's it I have established causa equine syndrome. I hope u get a good pain relief.

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    • Posted

      Keith

      Wow. You have been through it. Like you I rarely go out. I have issues with both legs, use AFO's and a cane. My proprioception is aweful and like you my legs will cave without notice, however mine will regroup which has limited bad injury. Most of my falls are tripping because my right foot forgets to lift and then its a face plant. I self cath but can empty with bladder compression. My bowels continue to be a lot of work to control. I am also as someone else here has said, resolved to a vegitarian diet and constantly modifying it based on what exacerbates constipation. Keith, some people do not get that our injured nerves are constantly sending a signal to our brain in the form of pain. I have habituated to some of the pain however it is something that constantly wears you down. I was left 41 days from injury to surgery. The PA that I saw said it was not CES because CES is rare. THis kind of thinking is dangerous!!! He said, Trust me, This is what I do; I only take care of backs. He handed me a script for steroids and said it was inflamation. I trusted his word as he said this is his expertise. However I ended up going to the ER because of fear that he could be wrong! Thank God that I did. Especially since I had all the symptoms and the MRI was indicative of CES! When the surgeon cut the dura he said the disc popped out because of the pressure, he cut off what popped out and the rest sucked back in. He said what he cut was the size of his thumb. I continued to have pain after surgery and when I sit for even a short time i have exacerbated numbness in the buttocks especially. I have lower limb weakness. I get exhausted quickly with walking which is also why I only go out occationally. I get cramping in in the muscles of my legs. My legs feel restess and toothachy. I get the feeling that cool water is running down the back and sides of my legs. I still check to see if its wet because Im so worried about an accident! My post surgery MRI show that the piece of disc that sucked back in is again teetering on my Cauda Equina nerves, I have a large hemangioma at T10, and 3 bulging discs. They said they won't do surgery again so I am like you disabled. Im so sorry for all of the surgeries you have had to have. No one should have to live like this. I struggle with severe depression and suicidal thoughts. Even on medication I can barely function. Im on Lyrica, Cymbalta, Abilify, and Tramadol. Blessings to you Keith, you are not alone in this, if CES is so rare like the PA said to me, I wouldnt be sharing with others just like me. Stuck with something that could have been prevented.

      Chrioli

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    • Posted

      Hi Chrioli

      ?I am the same as you had my 1st  surgery about 4 years ago  Then 3 more surgeries after that to put a cage in my spine.I have more bulging discs but the surgeon said they couldn't do anything else for me 

      I still have lots of pain and cant walk properly .I have been on so many meds I am sick to death of it all

      Joyce xx

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    • Posted

      Hi Joycemadine,

      I hear everything you are saying. I reached the same place you are experiencing after I realized what I was left with. And now I'm on antidepressants. CES is unpredictable and while some see great improvement some don't. Mine is the same since surgery because of the long delay to remove the mass effect on my nerves. A sensitive psychiatrist can help you get your mojo back and some medications work better than others on nerve pain. While staying positive is helpful, it's not always realistic. Depression happens in the face of CES. Sometimes we need help out of the hole we find ourselves in. I never understood depression until I was in it. Let me know how it goes. 

      Chrioli

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    • Posted

      Hi Mary! I just wanted to see how you were doing. It looks like my situation is similar to yours. Had back pain for many years, on my 3rd trip to the ER after the pain being the worst its ever been, I was given an MRI which showed CES. I am not at home, I walk with a walker and just started outpatient physical therapy. I have drop foot in my left foot and a slight drop foot in the right. It looks like its been a year since you have written this so I just wanted to see how you are and if you have any tips for me!
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    • Posted

      Hi juliepac, I am happy to offer you encouragement. My story is ending in a very good way. It will be a year November 29. I had no feeling from waist down. Now after 6 wks in a rehab hospital and physical therapy two days a week, I am able to walk distances with a cane and short distances, like from room to room, with no assistance at all. I still have difficulty with balance, but I'm working on that now. All the pluming is working well. I have some pain in my feet after long periods of being on the move at work all day long. I still have enough energy to attend my daughters volleyball games at night. I have joined the rehab facility so I can go on my lunch hour and work my feet/legs for a half hour. I am soblessed, to say the least.   Advice----- work hard and never say never. You can do it. You may not feel like you're making progress, but others will see it in you. Don't get discouraged, if you do, talk about it with you physical therapist. They are wonderful at giving out encouragement and noting where you were and pointing out where you are now. We forget, as we want it all now. I goes slow but it goes. Just keep on keeping on.  And if you believe in prayer, pray lots and often, and have others pray for you. I think our whole town was praying for me. My mothers work. 

      Blessings to you and good luck, work hard. 

       

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    • Posted

      I completely agree it took them 2 months to find out about my cauda equina even though I went to the er they did nothing but give steriods and send me home when i couldnt move they never did tests etc .. ( some of my recent story is in my topic post other parts of previous are posted comments of on other peoples posts etc ) so i wont repeat here but again wanted to say I totally agree with you!! .
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