CES numbness changes

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I have previously posted in May 2017 regarding my CES diagnosis and the early stages of my recovery. On the whole I have made pretty good progress I think. I have always had some saddle numbness on the right side and some down the right calf area and the right foot. This improved for a few weeks or so after the operation but would say it has settled down now and been the same for about 1 year. 

My question is surrounding this particular area. Does anyone else that suffers with the same numbness and loss of feeling have periods of a few days where it feels a bit worse than what is normal for you? Over the past 3,4 days, and this has happened once or twice before I think over the past 12 months, my saddle area just feels a bit 'heavier' - like a bit extra numbness has spread a bit more. Does anyone else have these same changes? Is it normal?

I am not unduly concerned currently and would add I am in no pain or showing any kind of symptons of any back pain etc and do expect the feeling to go down again. The difference is so minimal but just wondered if anyone else has any similar changes? Any advice or input appreciated.



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  • Posted


    I have the same issue on the left side all the way down through my foot. Surgery was thanksgiving day 2017, so I am not as far along in my recovery, but I have days where the numbness will be more/less intense. I also sometimes have random shooting pains in places I don't really have much feeling, if at all. My neurosurgeon wasn't concerned and gave me a prescription for gabapentin (nuerontin) to treat as it is used with patients who have phantom limb pains after amputation. As a side note, it didn't really work that well for me so I stopped taking it and I choose to take nothing now. Also, if I sit for too long my numbness definitely increases and my neurosurgeon was not concerned about this either and said it would be normal. Laying down does the same and I am constantly changing positions while I sleep and dont feel like I have gotten 1 good night sleep since surgery. I was told a timeframe of 2-5 years for whatever feeling you will regain to fully come back. Hopefully this means your body is trying to heal itself and return some feeling that you don't currently have. I asked my Dr a million questions during my 2 follow up appts because I was so scared and I explained everything little thing because I had no idea what to expect for the future and it terrified me. If you haven't, its probably worth a conversation with your Dr. Even if it's for nothing more than piece of mind. I hope this helps you and good luck in your recovery.

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  • Posted

    I have the saddle numbness and numb down outside of left leg and foot. Some days it is much worse and more times I feel like I could play a round of golf. I find the more physical stuff I do the worse it gets,. Hoping things improve for you. I’m nearly 5 years in and little improvements but any day I can get out of bed and walk is a blessing. Donal 


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  • Posted

    I had major back surgery 25 years ago and have had intermittent problems passing urine and numbness in my perineal area that is always present to a greater or lesser extent. I have little sensation when passing urine and in sensing when my bladder is full. It was only after surgery for an enlarged prostate (benign) three years ago and then an episode of difficulty passing urine last year and consequent uroscopy, that I mentioned, in passing, to my urologist, that my problems seemed to date back to my need for back surgery 25 years ago. On further questioning he concluded that as he could find no other causes for my urinary problems, I had undiagnosed Cauda Equis syndrome. As I was left for some considerable time with back problems and needing a stick to walk with because of sciatica all those 25 years ago I conclude that with the benefit of hindsight my GP and other professionals failed to identify the damage that was being caused , but in the days before MRI and CAT scans it was probably unavoidable. I'm not even sure that CES was even recognised those years ago. I have learned to live with the problems as I seem to have little alternative apart from pain killers and Contiflo tablets which help with my urine flow.

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