Cauda Equina: My Experience

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So, before I get started I have to say I write this with a measure of guilt. Many people here have heart-rending stories and trust me I feel for all of you. But, compared to many stories I seem to have fewer symptoms. I went back and forth about writing my story and it took a great deal of convincing by my wife to do so. I decided to write it as an example of a more moderate case, though it is still a watershed moment in my life that has taken much from me. 

I had back problems for a while but they would always go away. Then after taking a 5 hour plane ride then hoping in my car and driving another 3 hours my back completely locked up. I started to experience constant pain. I could not walk or stand for more than a few minutes and was severely debilitated. I dealt with it for almost three years as it got progressively worse before seeing an orthopedic spine surgeon. He diagnosed me with a bulging L5 S1 disk and operated. I travel for work and was back on the road a couple of weeks later. About 9 months post op I started to experience a return of my symptoms. I went back to the spine surgeon and he said it was probably a pulled muscle. He took and X-ray and determined I was fine (that's right, an X-ray for a bulging disk) and prescribed my prednisone. Prednisone gave me some relief but as soon as I went off it my condition took a rapid turn for the worse. I flew in to the office across the country. Over the course of three days I went from laying on the floor of the office to losing control of my bladder and sphincter. I talked to the staff doctor at the onset of the significant pain and he prescribed prednisone again. I told him I was having leaks and he continued to say the prednisone would help. It was not until I got out of my chair and completely lost control of my bladder that I knew something was seriously wrong. I called the doctor back and he told me to go to the ER. I had to wrap a towel around me as I could not control my bladder as a coworker drove me to the hospital. I had lost anal wink and my hemorrhoids and bowel were starting to protrude. After a quick MRI I was off to surgery. It had been less than 10 hours since the onset of bladder problems. The first two weeks were awful. My wife (who has been truly, truly amazing) had to fly in and we had to stay in a hotel because I could not fly back. I had a catheter inserted and had a difficult time emptying my bowels. I was given laxatives and ended up pooping on the floor while trying to get dressed and again twice in the shower. The worst part was actually the hemorrhoids. They hung  out constantly and developed lacerations from the friction of my diaper. They hurt so badly I was ready to go back under the knife less than a week later to have them removed. I finally flew back home more than 2 weeks later. The first night I was at home I developed a fever and rushed to the ER again. I had another MRI and a spinal drain to remove fluid buildup and to test for infection which came back negative.

 I am now almost 4 months out. I get around fine and can walk over a mile or so but have a noticeable limp. I cannot push off my left foot and my calf is severely atrophied. I still have a catheter and my hemorrhoids will still hang out from time to time causing the need to wear a diaper intermittently. Talking to my second surgeon he is of the opinion that my first surgeon did not remove enough of the disk nor take into account the severity of my stenosis. He obviously should have ordered another MRI after I presented with the same symptoms. He was certainly lazy and not up to the standard of care. 

I was able to have sex with my wife last week. I removed the catheter and replaced it with a new one myself. I had to take Viagra which worked good not great. The first time felt like my penis was being poked with pins and needles and was not enjoyable. The second time, a few days later, was much better but I was not able to ejaculate.

To most people I just have a limp and a sore back but they don't know the more debilitating aspects. I am one of the lucky ones who had the decompression soon after the onset of bladder/bowel problems which we know is a significant factor. I have recovered a good deal in 4 months. But, it has significantly changed my life. I am a former collegiate athlete and now I cannot run nor exercise more than light  walking (I do not mean to take this for granted as I know some can barely walk at all). I have to plan sex with my wife which is not the end of the world but I wish I could be available like I used to. She has dealt with so much because of this and the worst part is I want to be normal for her more than myself. I want to live the life of a normal 36 year old man.

I'm sorry I rambled on. I hope this helps someone as all your stories have helped me.

2 likes, 8 replies

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8 Replies

  • Posted

    Sorry for your situation but I will say you are more fortunate than myself.

    Since the age of 26 talking about 15years ago I have been living with CES and it has affected my life in a bad way..at 41 no child,no wife and in a world of my own.

    The worst part is ghat in my country not even one doctor can gully examine the condition and the best I have done is MRI of the bladder region and lumbosacral region.

    Everyday I pray that I find help somewhere so that I can travel out of my country to fully examine my condition.

    Do you experience retrograde ejaculating too? a case where little or no sperm is emitted during sexual act?

    Just keep heart and have a positive approach to life and do self intermittent catheterization rather than have a catheter on you all the time.

    Remain positive

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    • Posted

      Thanks Olatokunbo. I hope you find the help you need. I am currently unable to ejaculate at all. Question: Why do you suggest the intermittent catheter? I can tell when I have to go and I'd rather not carry a long stick to the bathroom every time I have to go at work.

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    • Posted

      I guess there are varying degree of damage but mine was such that my bladder spinster was no longer functioning do I had to force out urine which still left a huge volume of urine in the bladder bug until I stated using the intermittent catheter I have been able to empty my bladder with the hope that I get the surgery done if I have the money.
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  • Posted

    I'm curious about how you're doing, as I calculate you're about a year out from surgery by now. My complications are similar to yours, I am currently 4 months post-op. I still have a great deal of numbness, esp. my left leg, buttocks, groin. I have decent bowel & bladder function now (not normal, but I can live with it). I did come home from hospital with a cath but no longer need it. I also struggle to walk normally, kind of bizarre movement & limp in the left leg, and like you, my left calf is pretty flaccid. I'm a 44 year old woman, and sex is certainly not what it once was as I still have almost no feeling in my vagina. Seeing that when you wrote this you were kind of in the same place as I am right now, I was wondering if you've continued to recover as time went on? I hope you're doing well. 

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    • Posted

      I am also in a very similar situation and 4 months post op. Although I have seen an improvement since leaving hospital I feel I am now at a stand still.. I have no push in my left foot which is apparently the cause of my limp.. it appears a few people have said this so it would be interesting to know if and how long it took for anyone to get this nerve feeling back? Again I was given 2 year recovery time and would like to know how realistic this is and if anyone has a story to tell of improvement over this time period.. At 29 years old I suppose I am looking for a glimmer of hope that I just need to be patient...

      Thanks

      Laura

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  • Posted

    Thanks for sharing your story. I hope you are experiencing some recovery & quality of life.

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  • Posted

    Rodion please don’t feel guilty because you are not as bad as some people. Anyone with this disgusting syndrome has s right to talk about it. I am 41 yr old woman with a partner and two kids. I was diagnosed with CES after a disc prolapse in 2014 when my children were only young. I had gone to a private hospital cos I thought I would be treated quickly and efficiently. Was I wrong!! They kept me in for three days did a rhizotomy injection then sent me home. I could hardly walk and I kept peeing constantly though not much was coming out. I went back the following week as I was getting much worse. I was there for 3 days until a nurse overheard another patient commenting on how often I was going to the toilet. Then all hell broke loose and there were drs everywhere. I was rushed to an acute hospital where I underwent emergency surgery. 

    The surgery did not work and a month on I had to have another surgery having a full discectomy and double level fusion. 

    I spent four weeks in hospital following this as I had a discitis infection in the disc that was removed. 

    I then spent 8 weeks in rehabilitation hospital trying to deal with ces intermittent self catheterisation and manual evacuation of my bowels and lack of sexual feeling. My partner and parents have been great but I feel so bad for my kids as I used to be so active. 

    The pain is the worse part of it and the medication to help with the pain and how it affects me. I am in agony all the time 

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  • Posted

    Hey everyone,

    Sorry I've been neglecting this forum, apologies. I almost a year and a half out. You'll be happy to know I had to have a cervical neck fusion this summer due to the stenosis that runs the length of my spine, so I've been dealing with that as well. As far as function goes; I am still not able to get fully erect on my own. Ejaculating is extremely difficult but can be done. It seems as if my bladder issues have worsened over the last month or so. I find myself having to push to the point of straining to fully evacuate. Has this happened to anyone? I'm fearful of what might be causing this and I am hoping I'm not doing any permanent damage. I can walk well over two miles but my hips and knees are now out of whack, if you please, do to the fact I still cannot push off of my left foot. Every now and again I'll get some nerve zaps running down my leg which is disconcerting to say the least. Every time it happens I get fearful something has gone wrong. I will say this: I have gotten much better. My condition is almost to the point where it is mostly an inconvenience (save for the new bladder issues). I live life normally though I cannot be as active as I want. I do my rehab exercises almost everyday which is now almost the full extent of my exercise because it takes so long. I've gotten much stronger and continue to. There is hope for recovery. I know how scary it is in the beginning but it does get better. 

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