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Cauda Equina recovery stories

I’m really desperate. I’m one week out from an emergency laminectamy to my l5s1 to decompress and relieve my sciatica and for about 30 hours, total numbness in legs, butt and groin, I’m now still in pain and still numb and very incontinant. I can’t feel when I have to go, and sometimes when I stand up I just pee all over. It’s so envarassing I’m only 31 am I gonna be in diapers the rest of my life?!?  Having such a bad night right now 

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Comments

  • L4_L5LL4_L5 Posts: 1,416
    edited 03/23/2019 - 6:56 AM

    I would go to the ER if this happened to me. Anytime you can’t control your bodily functions constitutes an emergency IMO. 

    Don’t be embarrassed. It’s a legitimate medical condition. 

  • I did go to the er.. they did emergency surgery. I’m still in the hospital with no feeling or bladder control 

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  • Caseyb99 since you are still in the hospital and are in the first week of your recovery you are being monitored by professionals and you must have faith in your medical team first.  Then you must not panic , you must replace that P with Patience. Emergency Spinal surgery is major and you must follow your doctors orders for OT and PT, which I assume you receive daily, if not twice daily.  Just focus on positives in your life and try your hardest to be patient, anytime you have that serious of nerve compression it will take quite a while for your nerves to calm down and hopefully heal.  I am 1 year post op had four nerve impingements and am still dealing with leg and foot nerve related issues, it takes time, effort (PT) and other methods to get through. There are many knowledgeable people and valuable links on this forum for you to learn more about recovery and treatment.  Good luck to you 

    L3-S1 ALIF Feb 2018 and 

    L3-S1 PLIF Laminectomy and Fusion March 2018

  •  Casey

       I am sorry you are going threw this and at such a young age. But as Joel stated at times it does take time. I know it can be both frustrating and frightening. Hopefully this is only temporary.  I really cant offer you advice since I haven't surgery on my lower back ( crossing finger) yet.

       But please keep us posted and I truly wish you the best and a fast recovery. Keep calm and try and relax I know that's easier said then done.

  • I just had surgery for ces in March. I am slowly getting better but it is slow and painful and frustrating. I have some bladder control but overnight forget about it. I was in retention but based on the numbers I record daily it's starting to get better. 

    I was sent home with a catheter in place 2 weeks later it came out I was home for a week and then we determined retention now I'm in my month of recording how much I pee with and without the catheter  (I self catheterize). I am lucky I pretty much have bowel control unless I have overly soft stool. 

    I am also young 33 to be exact so I know how devastating this can be (living like you are 80). If you have not seen a urologist I would asap. 

    Depending on where you live a lot of people have nor heard of CES or they think it is due to MS and that can make things frustrating. Hopefully since this is over a month old you are feeling better. 

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  • I had surgery for CES as well in March 2017.  I had dealt with increasing sciatica pain, noticed the back of my leg was feeling numb and dr. Google recommended a trip to the ER. I had a 18 month old that we had to figure out childcare so I did wait until the morning to go to the ER where I had a laminectomy later that night for the L4-S1.  I had major urinary retention, which I had to self-cath.  I’m still under supervision of a urologist, take tamsulosin, but even with minimal nerve function haven’t self-cathed for over a year.  I still have residual foot and saddle area numbness more on one side than the other.  And muscle weakness in the calf area but i have gotten stronger and adapted to it over time.  The surgeon said it takes time and up to a year but keeping a regular exercise and strength training program after PT helped me get better with walking and keeping up with my 4 year old.  There weren’t many CES cases here when I had my surgery so happy to share more info with others.  I had some other issues that resolved too.

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