Cauda Equina Syndrome: Pain, symptoms, management and prognosis

Posted by skiprel1957 @skiprel1957, Feb 17, 2019

I can't seem to find a group for cauda equine syndrome so I chose chronic pain. So if there are People on here with CES please respond. My name is Skip, had back surgery and had a blood clot after surgery. It compressed the nerves at the nerve root, have most of the normal problems. Bad back pain, numbness down my legs, pins and needles in my feet, have to use a cane or wheelchair, loss of bladder function, terrible rectal nerve pain, I could go on, but if you have CES you no what I mean. Have had this for about 8 months now and I would like to hear from anyone who has had treatment for CES. My pain Dr. has no clue what to do. Just on pain meds now and would like to know if spinal injections would help. This stuff is really bad, Lyrica doesn't seem to help, Morphine and Oxycodone help but in no way takes the pain away. I really hate the mornings when the meds have wore off a bit and I have to get out of bed, sometimes I take a pain pill and give it a half hour or so then get up. The pain just continues to worsen and I'm concerned about the future. My Surgeon just stuck his head in the sand, wouldn't even discuss my diagnosis with me just wrote it down so I could Google it. He has virtually told me nothing. Will never go back to him. See a new Surgeon in a couple of weeks. Would love to hear your stories.

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debicottle | @debicottle | Oct 15, 2022

I had surgery at Rush University Hospital in Chicago for CES on 6/16/21. Like u I had three doctors simply blow off my symptoms for over one year until I could no longer work and was on a walker/wheelchair. My “pain doctor” got an mri and said I had a lot of stenosis. He sent me for injections. That doctor tried to help but never told me I had CES either. By then I could not feel myself pee or poop. I was in a wheelchair. No feeling below knee in either leg. The first pain doctor sent me to his friend who was a neurosurgeon who told me 2 minutes after I walked in his office that I was fat and would die on table if I had surgery. ( by then I had lost about 50 lbs) he gave me a referral to a bariatric surgeon and told me to come back in one year! He never looked at me or my mri or the report. I went home and wanted to just die at that point. I would pray not to wake up in the morning. After a few weeks I called my orthopedic surgeon and asked if his mom needed back surgery who he would send her to. He sent me to dr Gregory Lopez at Midwest Orthopedics at Rush. We did surgery for CES 7 days later. I got back some feeling but still have neuropathy in both feet and calves. I also have reduced feeling in my saddle area. My surgery was 8 hours long. I had 8 laminectomies and L4-L5 fused. I still need other surgery but I am walking with a cane. Just had 1 st visit to dr fogelson at Mayo and will be going back for more tests in December. I do need to lose another 30 lbs. good luck to you!

Jennifer, Volunteer Mentor | @jenniferhunter | Oct 15, 2022

In reply to @debicottle "I had surgery at Rush University Hospital in Chicago for CES on 6/16/21. Like u I..." + (show)

@debicottle Hello Debi, and welcome to Connect. I see that you had an appointment with my favorite surgeon, Dr. Fogelson. He's a really good guy and excellent surgeon. He did my surgery for cervical stenosis. You might like to read a few of his patient's stories. I am one of them (the artist).
https://newsnetwork.mayoclinic.org/discussion/using-the-art-of-medicine-to-overcome-fear-of-surgery/
.
https://newsnetwork.mayoclinic.org/discussion/repaying-a-gift-scholarship-recipient-says-thanks-in-a-special-way/
https://newsnetwork.mayoclinic.org/discussion/sharing-mayo-clinic-spinal-surgery-saves-teen-swimmers-mobility/

angelicscripts | @angelicscripts | Oct 16, 2022

I've had lumbar disc displacement at L4/5 since my 30 but didn't know I had it, by chance of requesting medical notes it was on my notes . I've had sciatica numb feet pain but was not really heard that is, when left hip went at 40yrs...now 54 can barely walk & the pain is of the charts. In August I couldn't walk & weeing pooing without sensation , so the doctor sent me to A & E with note in hand suspected Cauda Equine urgent Mri needed. 5hrs later I'd had enough went home . Carried on best I could went back docs who asked if I'd been A&E which I replied with 5hrs not to be seen isn't on especially since you were to ring the hospital prior to let them know a patient with suspected cauda equina on her way up. Within a week Mri done to be told dics from L5 to L1 GONE with Stenosis (lumbar) having researched the conditions related to this & find its all connected & I'm waiting on neurosurgeon Still...oh what a life to live Not!

debkl | @debkl | Oct 16, 2022

Tom Jesson is a physiotherapist who has dedicated his career to studying sciatica and CES. He teaches clinicians about both. His writing is easy to understand. Googling his name will provide links to his research, articles and interviews. I subscribe to his email newsletter and it has helped me learn about my relentless sciatica.

jwm61 | @jwm61 | Feb 23 7:07pm

Has anyone experienced cauda equine surgery or symptoms.

Colleen Young, Connect Director | @colleenyoung | Feb 24 12:46pm

In reply to @jwm61 "Has anyone experienced cauda equine surgery or symptoms." + (show)

Hi @jwm61, I moved your question about cauda equina symptoms and surgery to this existing discussion:
- Cauda Equina Syndrome: Pain, symptoms, management & prognosis
https://connect.mayoclinic.org/discussion/cauda-equina/
I did this so that you can join the discussion, read previous posts and connect easily with members like @debicottle @jenniferhunter @angelicscripts @debkl @jenatsky and many others.

What symptoms are you experiencing? Are you considering surgery?

ikcooley | @ikcooley | Feb 25 9:56am

In reply to @angelicscripts "I've had lumbar disc displacement at L4/5 since my 30 but didn't know I had it,..." + (show)

I’m sorry to hear this. I was told that cauda equine is an emergency surgery and that should be dealt with within 24 hours. I can’t believe that yours is dismissed. My doctor warned me that is my stenosis which was causing leg numbness persisted it could progress to cauda equine and that I should have surgery with la year to prevent the progression. I hope you get immediate help!

jwm61 | @jwm61 | Feb 27 9:59am

Thanks for your comments: I am in the process of trying to determine if my condition (particularly the incontinence) is Cauda Equina or maybe the Pudendal Nerve. If you have any suggestions regarding your experience in trying to determine which one may apply to my condition. I had a neurosurgeon operate on me several months ago. My incontinence seemed to start then, although I am not sure it is time framed with that operation. I am now working with an anesthesiologist for the pain and incontinence. My primary doctor sugested that I should be working with a neurosurgeon. Could you comment on my primary physicians suggestion?

jenatsky | @jenatsky | Feb 27 10:56am

Generally in CE urinary incontinence is considered a red flag warning in CE and requires immediate attention of a neurosurgeon or orthopedic surgeon.
https://www.ceslife.org/red-flags.html