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sheabebabe (@sheabebabe)

Cauda equina syndrome (CES)

Spine Health | Last Active: Feb 18, 2020 | Replies (16)

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@iowagirl06

I have had CES for 12 years. Im 53 , and had been improving the last 4 years. I went off SSDI and Medicare and went back to an office job full time. Now, a year after getting all that done, my symptoms are getting worse every day. Started with the leg pain, then bladder incontinence, then bowel incontinence, and pretty severe pain in the lower back area. Now I'm at a loss once again as to what to do or where to go for help. I felt like I had gotten the best I could get and hoped it would stay that way. Anyone else have a swing in symptoms like this? Am I going to end up self catherizing again? So scared, and no one understands! Any info would help.

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Replies to "I have had CES for 12 years. Im 53 , and had been improving the last..."

Hello, my name is Skip, 61 years old. Got CES from a hematoma after back surgery 8 months ago. I have been steadily getting worse with nerve pain since surgery. I have a long story but I won't get into it at this time. Don't want to bore you, smile. I haven't had CES as long as you but I'm also scared, and no how you feel. Seems like Doctors don't have a clue what to do and friends and family don't understand. I was on a catheter for 6 months. I had an enlarged prostate, due to that and the week bladder from CES, I had prostate surgery. Wasn't any fun but after surgery I was able to urinate on my own and got rid of the catheter. Thank God for that.
I still suffer from all the normal CES problems, balance, have to use a cane, walker of wheelchair depending on how far I have to go. Numbness and pain down my legs, pins and needles in my feet, severe back pain, Rectal nerve pain that is awful. Going to a new Surgeon Monday, I hope he will have some insight on CES. Please get back with me, together we may find some answers. …Skip

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