Cauda equina syndrome (CES)

Posted by sheabebabe @sheabebabe, May 2, 2017

2011 I started with pain down my legs I could hardly walk it was so painful. After the MRI didn’t come out well at a clinic I went to the hospital suicidal saying I’d rather die than live like that another day. They did MRI and found I had L5S1 slipped disk. They admitted me for pain management and started me on pain meds. I was relived finally I knew what was wrong and had meds to help the pain. Found a pain clinic and my first injection was wonderful took the shooting leg pain away. I tried a couple more with little success then the last on he knick something which caused a large hematoma. So very painful. Swore I’d never do it again. Last nov I turned from the sink heard a pop and instant pain I thought it was like other times where some prednisone would do the trick. It got worse I started loosing feeling below and pee just poured out when I stood. I went right to ER. The surgery they said I could not have because of weight was finally being done. 5 months later I still have tons of nerve type pain and I have a foley cuz I have Cauda equina syndrome (CES).

Sorry about some of my spelling

@sheabebabe

Sorry about some of my spelling

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Hello @sheabebabe, no need to apologize for spelling. I constantly find myself misspelling medical terminology, so many complicated words!

You are dealing with a lot of issues related to your back and nerves. Cuada equina syndrome is rare, and I can imagine frustrating. I was able to find a few members who previously experienced CES, but it was awhile back. I would like to invite @ledgerwp and @topaz to this conversation to share their experience with CES.

@sheabebabe, while we wait to see if they rejoin us, would you mind sharing a bit more about your back/nerve issues? Is the CES the primary cause of your issues? Has the CES caused any long-term damage?

I broke my back landing my glider almost 4 years ago. I have suffered with CES ever since. There must be some treatment.

@sheabebabe

Sorry about some of my spelling

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Add me to your list CES

@sheabebabe

Sorry about some of my spelling

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I have the classic symptoms. Nerogenic bladder and bowel. Constant burning in the saddle area concentrated in the anus sphter muscle. I'm on Lyrica. I've tried many treatments. Nothing works.

i am a wounded vet. hurt my back in 2004 in Iraq. i started with at best moderate herniated and bulging discs in my L-3 – S-1. i got hooked up with the good ole VA in 2008. thru all their infinite wisdom i managed to progess into severe herniated and bulging discs and a new found friend severe spinal stenosis. this would eventually become caudia equina syndrome which has left me all jacked up. i have been doin some reading and im curious to know if this could have been caught and what should i do or talk to for further info. i believe their inaction led to this as i was barely hurt to begin with. now im a parapledgic. and lyrica dont work or loritab. you should look into medical marijuana.

Hello, @paladin121, and welcome to Mayo Clinic Connect. First, I wanted to thank you for your service.

I'm hoping some of our other members who have some experience with cauda equina syndrome, like @dhuffman1969 @sheabebabe @ledgerwp might join in and have some thoughts on whether your cauda equina syndrome might have been caught, what you should do now and to whom you might speak for further information. I believe that @johnbishop and @sandytoes14 may have some insights to share, also.

You mentioned you are paraplegic. What kind of help do you have at home, @paladin121?

Hello @paladin121 — I would like to add my welcome to Connect along with @lisalucier and other members. I also want to thank you for your service. I had not heard of caudia equina syndrome but used my favorite research tool – Google Scholar (https://scholar.google.com/) and found an abstract for an article that seems to support what you have said. Unfortunately it's just an abstract and you have to buy the full article. The following quote was from the abstract.

"Summary of Background Data. Cauda equina syndrome from lumbar disc herniation accounts for up to 1% of all disc herniations. Most of the literature supports surgery within 24 hours as a means of improving the outcome."

Medical Realities of Cauda Equina Syndrome Secondary to Lumbar Disc Herniation:
https://journals.lww.com/spinejournal/Abstract/2000/02010/Medical_Realities_of_Cauda_Equina_Syndrome.15.aspx

Keep asking questions and looking for answers. You are your best advocate.

@sandytoes14 sent me the following link which may have better information on cauda equina syndrome:
https://www.disabled-world.com/disability/types/spinal/backpain/ces.php

John

@lisalucier

Hello, @paladin121, and welcome to Mayo Clinic Connect. First, I wanted to thank you for your service.

I'm hoping some of our other members who have some experience with cauda equina syndrome, like @dhuffman1969 @sheabebabe @ledgerwp might join in and have some thoughts on whether your cauda equina syndrome might have been caught, what you should do now and to whom you might speak for further information. I believe that @johnbishop and @sandytoes14 may have some insights to share, also.

You mentioned you are paraplegic. What kind of help do you have at home, @paladin121?

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i moved to Florida from Kansas a bit over a year ago. i just have me. and i still have the ability to walk but i deal with all the rest of it. and it was my understanding that CES is a form of paralyzes

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.

@sheabebabe

Sorry about some of my spelling

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Hell, don't worry about spelling when you have a spell check, smile. My situation started years ago. I'm an Army Vet and spent about 3 years at the VA having injections, with no help at all. I had, what I thought at the time was pinched sciatic nerve. In all their wise wisdom and taking direction from the US Government, the VA took me off pain medication. I spent 3 more years in severe pain with no pain meds and finally decided to have surgery. Found out after surgery that the sciatic nerve was actually crushed in two places. Had L3,4,5 fusion, with a laminectomy. Then a hematoma caused CES. Lost bladder function, bad balance, severe back pain, numbness and pain down my legs, pins and needles in my right foot, have to use a cane, walker, or wheel chair depending on how far I need to go. The only positive thing so far is I ended up having prostate surgery because I have an enlarged prostrate, My urologist suggested the surgery because of my week bladder from CES and the enlarged prostrate, surgery may be the only chance to get off the catheter. Low and behold it worked and after 6 months with a catheter I was able to urinate on my own. I have control issues and at times leak, But I'm very thankful, Prostate surgery wasn't any fun but I would do it again and again for the same results. I suffer from all the other problems and take one day at a time to get through it. It really effects me mentally, on anti depressants on so on. Your story is very interesting, sounds like the hematoma may have caused your CES. How long after the injection was it before you were diagnosed with CES? and is it possible you had the hematoma the whole time? If so you may want to contact a Lawyer. Get back to me I would love to talk some more Thanks for the response. Skip

@dhuffman1969

I broke my back landing my glider almost 4 years ago. I have suffered with CES ever since. There must be some treatment.

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Hello, my name is Skip. Sorry to hear about your accident. I've had CES for the last 8 months, hematoma after back surgery compressed the nerves at the nerve root. I've done allot of research and I can't find anything about treatment post surgery. All I can find is about the emergency surgery that must be done within the 48 hour time frame after being diagnosed and what CES is. That's one of the reasons I got on this support group, In hopes to find out what others may no about any treatment. Get back with me, thanks for the response. Skip

@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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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

I have had symptoms of bed since I had a burst fracture of L1 over 4 years ago. Wasn't diagnosed until recent. So has anyone had success in decreasing this horrific nerve pain? Seeing 2nd surgeon this month. Haven't had any decompression, or any surgery regarding this. It all may be too late.

@badapple

I have had symptoms of bed since I had a burst fracture of L1 over 4 years ago. Wasn't diagnosed until recent. So has anyone had success in decreasing this horrific nerve pain? Seeing 2nd surgeon this month. Haven't had any decompression, or any surgery regarding this. It all may be too late.

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CES not bed

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