Patient Comments: Cauda Equina Syndrome - Symptoms

What were the symptoms of your cauda equina syndrome?

Comment from: Robert Walker, 55-64 Male (Patient) Published: July 28

In the year 2000, I had emergency surgery at my doctor's hospital, after it was determined I had equina syndrome. Unofficially I feel it was caused by improper diagnosis and treatment at another hospital, giving me weighted traction for my lower back pain I was experiencing. I had immediate terrible pain, they realized something was wrong and sent me by ambulance to my doctor's hospital about 30 miles away. My doctor immediate recognized my symptoms and ordered an MRI and surgery to help. I now have permanent nerve damage, and have issues with bowels, bladder and no Sexual function, and loss of sensation in my left leg and foot too.

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Comment from: Hoping the best, 45-54 Male (Patient) Published: June 22

Here are the facts. I had a snowmobile accident on February 1st, 2015. I was busted up pretty good and was rushed to hospital by ambulance. Once there, it was found I had multiple fractures and I was kept in the emergency for 32 hours. I was sent home after multiple x-rays and CT scans. I had all the trouble in the world getting back home and the pain would get more and more intense. Twenty-four hours after being home we called an ambulance to take me back to the hospital because at this point I was now incontinent and the pain was extreme. At this point they sent me right away for an MRI and that was when they discovered cauda equina syndrome (CES). They searched for a neurosurgeon and found one and I was transferred by ambulance for an emergency operation to release the nerves on my L-3 and L-4. It has been a little over 4 months and I spent 3 weeks at the hospital then 6 weeks at a rehabilitation center. I am now back home and I go 4 days a week for physiotherapy and occupational therapy. I started out with a wheel chair for about 2 months, then went on to a walker, then a pair of crutches down to a cane. I still have bowel, urinal and rectal issues, three things that I don t really have any control over. But I am working out and doing plenty of exercise and hoping for the best. It can be very scary not knowing what the future is but they keep telling me to be patient; now they know that I am not patient and I am tired of hearing them telling me to be just that.

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Comment from: Louie T., 45-54 Male (Patient) Published: January 22

I lived in New York but while visiting my mom in Ohio hospital, my back pain became increasingly worse. I went to the emergency room, was diagnosed with cauda equina syndrome (CES), immediately admitted, and taken to surgery. Because of my particulars, the chairman of the neurology department performed my surgery). My mom and I were in the same hospital but on different floors at the same time; they would wheelchair her or me to see each other. I still have significant back and leg pain from time to time (almost on a time clock - every two to three months requiring lots of pain medications) and I have urinating issues (when I have to go, I have to go! Now!), and when my back is acting up, bowel movements are difficult. But I feel pretty lucky as I can deal with my issues pretty easily.

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Comment from: Michelle, 45-54 Female (Patient) Published: December 16

I have cauda equina syndrome (CES) with bowel incontinence which can be extremely embarrassing. I get treated at a VA (Veterans Affairs) hospital and they keep wanting me to see a gastroenterology specialist for which I tell them no, as it is my CES. My lower back pain is absolutely horrible as is my right hip pain. I am now getting bone pain in the long bones of my legs. I am just a mess. I live alone and housework is out of the question. Doing dishes is torture for me.

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Comment from: Amy, 45-54 Female (Patient) Published: October 07

I had lower back pain that progressed to numbness in saddle area; cauda equina syndrome. My doctor ordered an MRI. I lost control of my bladder. My daughter took me to an emergency room where a neurological trauma team came in. I had emergency surgery for a herniated disc that was pinching my spinal cord. I still have terrible lower back pain. I am unable to sit down at all, the pain in my buttocks is horrible. I take a lot of pain killers. I am in the process of getting a spinal cord stimulator to help control my pain.

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Comment from: Tbcb6, 45-54 Female (Patient) Published: June 23

After 13 years of severe back issues I finally resorted to spine surgery in 2011 for a herniated disc at L4/L5. Six months later I was immobilized by severe back pain from the same disc. I was sent for a spinal steroid injection. Two days later I was rushed by ambulance to the emergency room (ER) where the doctor on staff said I needed to learn to live with my pain and sent me home. Two days later I was back in the hospital in screaming pain and starting to feel numb in the genital area. After emergency spine surgery I awoke to being numb from the waist down. I had an external catheter for 30 days. I was told the nerve damage would take 2 to 3 years to heal. I have a neurogenic bladder and have to use a catheter. Sex is pointless because I can't feel anything. At 49 (and now) 51 years young with young children I have to use an electric scooter to grocery shop. My leg, calves and foot muscles don't work right so I can't walk more than a few feet without using a cane or holding on to someone. To top it off I have excruciating debilitating muscle cramps at night that wake me in the night screaming. I feel like my quality of life has been stolen from me.

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Cauda Equina Syndrome - Experience Question: Please describe your experience with cauda equina syndrome.
Cauda Equina Syndrome - Treatment Question: What was the treatment for your cauda equina syndrome?
Cauda Equina - Causes Question: If known, what was the cause of your cauda equina?

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