Patient Comments: Cauda Equina Syndrome - Symptoms


What were the symptoms of your cauda equina syndrome? Submit Your Comment

Comment from: ConnieCW, 45-54 Female (Patient) Published: July 31

I been having severe lower back pain to where I can barely walk, lie down, or even move at all, with cauda equina syndrome. It is excruciating pain.

Comment from: Lee, 75 or over Male (Patient) Published: May 14

I wonder with cauda equina syndrome if I can have painful symptoms that can come and go. Sometimes the pain will put me to the ground. But quite often I have no pain to very slight pain.

Comment from: Jim, 75 or over Male (Patient) Published: April 11

I am a senior with bad balance problems from cauda equina syndrome. I fell backwards jamming my right knee on a wood floor. The fall drove my femur (hip bone) sharply upward tilting my pelvis and affecting the nerves at the end of my spinal cord. I now have urinary and bowel problems in addition to erectile dysfunction; none before the accident.

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.

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.

Comment from: BARBIE, 65-74 Female (Patient) Published: January 30

I have symptoms of cauda equina syndrome. I got hurt on the job and lost the use of my shoulder. I had several herniation of discs, 15 bulging discs. One day I could not feel anything, the pain was severe at that time. I didn’t know what was happening and it stopped. The next time I could not stand, etc. Many doctors did not want to operate on me, only one surgeon helped me but it was for my neck. I almost died, I was operated on. I live in serious pain. I was on Opana, a great medicine. For a while I felt better but always in pain. Please do not think the pain will go away, please go to your doctor right away. Again I was operated on. I am thankful that I am walking but my life will never be the same. I need more surgery because this left me with so many problems. I wish you the best, do not stay in a room and be sad, try to do something good and think about beautiful things. Remember you are alive, good luck.

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.

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.

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.

Comment from: steve, Male (Patient) Published: June 02

I had subdural hematoma in December 2011 that resulted in cauda equina. I have been self-catheterizing 4 times a day, and I have trouble with bowel movement.

Comment from: baboosh44, 45-54 Female (Patient) Published: May 06

I have a bulging disc at L4, L5 and S1. I had it for about three weeks when my doctor sent me for an MRI and EMG. I'm really scared because I feel like something has gone totally wrong in my body. I can hardly bend my waist a certain way without excruciating pain. The same thing is happening with my hips and leg. I can't walk on my right foot at all and my left foot is shaking. To get up to go to the rest room is all I can do. I go this week for an epidural spinal pain shot and am scared that if something else is going on, we won’t see it.


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