Neuropathy Community Group

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cauda equina syndrome

Caren28
Caren28
I had cauda equina syndrome six years ago. This is a problem where the nerves at the base of the spine (the cauda equina) become entrapped by disks or vertebrae and affect the bladder, bowel, and legs. I had decompressive surgery that thankfully spared my bladder and bowel function but did leave me with permanent nerve damage. I can't feel either or my feet and I have severe electrical pain. The problem is in my low back, but it feels like the pain comes from my feet. Neurontin has helped me enormously, but there is daily breakthrough pain.
Has anyone else had cauda equina syndrome, or nerve damage caused by a back surgery? I'm in my 20s and have never met anyone else with a similar problem. Thanks!
deleted_user
deleted_user
I have never had this problem. But my doctors say that someday I might have this problem. Im sorry to hear about your pain. I have degenritive disks in lower spine that might someday result in this syndrome.. I shall pray for you. I hope that things will improve for you very soon.
deleted_user
deleted_user
I have only heard of one other person on here having this, for what i know of it, it is very rare.

and wow you are only in your 20's I am so sorry about our pain, how did you get this, from a fall or accident
deleted_user
deleted_user
I also have no feeling and 24/7 electrical pain, I had mine from surgery to save my left leg, I have no right leg AKA but my left has neuropathy from crotch to the end of my toes. I do not know nor can anyone say if or when it may return. I think nerve pain as a result of any surgery can be devastating and very painful I am on gabapentin as well and it only takes the edge off. Good luck with your healing and I hope you get some improvement. -joy
Caren28
Caren28
It is really rare, from what I know. I didn't have any kind of accident or injury, I just had terrible pain in my thighs that built over a couple of months. I had an MRI that showed severe stenosis (that's when the spinal canal is too tight for the spinal cord) and several herniated disks. I had never even had a backache!
Something to remember is that when cauda equina syndrome does happen, it's essential to have it treated with surgery immediately. As bad as my nerve pain has been, I'd take that over losing my bladder function any day.
Lazy_Bones
Lazy_Bones
Glad I came on here to see the posts about this. Pretty insane to hear other younger people with similar rare problems! I'm in my 20's as well and am having surgery in the next few weeks to alleviate nerve pressure and I totally understand the feeling that the pain and numbness seem to come from the legs rather than radiating down from the back. Do you find the numbness is more dominant in the feet and the pain more in the upper back of your leg? Also if anyone else has or knows about bone fragments coming off your lumbar spine that'd be interesting to hear your experience as well!

Good to hear you were spared the bladder and bowel control, I'm extremely glad I can still control my bowels, had some bladder issues but thankfully not so much during the day so haven't ruled out side effects of the night time meds or just stress in general. I'm guessing/hoping that problem goes away after recovery from surgery...

Definitely seems to stem from a less aggressive pain and progressively get worse under your nose until you finally get that first of many scans. I was fooled thinking it was a reoccurrence of an unrelated muscular problem I had a few years ago, thus not treating it as seriously initially but of course after physio and massage didn't fix it... My Nan had the same kind of surgery and my specialist said I was at least 15 years too early for it but I'll be glad when it's over and have sensation that's not pain, tingling or numbness. Best of luck, get well soon!