Patient Comments: Cauda Equina Syndrome - Experience

Please describe your experience with cauda equina syndrome.

Comment from: john_r, 55-64 Male (Patient) Published: February 11

I had an operation for spinal stenosis in August 2015. I went home that day after the surgery. I woke up two days later with everything numb from the waist down. I was rushed to the hospital for emergency surgery for cauda equina syndrome. I had to wear a Foley catheter for 3 weeks not knowing if my bladder was going to work or not. Thank goodness it does. It took me a couple of months to walk normally again. I feel very lucky that it was caught in time.

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Comment from: Christine, 35-44 Female (Patient) Published: January 06

Over 2 years ago I developed pain in my left leg which became worse whenever I laid down. I do have a history of back pain off and on for most of my life (and one episode of sciatica), but had little to no back pain at this time (although I had a bad back episode the month before). It was determined that I had a disc herniation and was referred to physiotherapy. It became worse very quickly. Two months after it first started, there was saddle numbness as well as numbness going down the entire back of the leg, and along the outside half of my calf and the entire foot. By this point I couldn't stand on my own due to leg and foot weakness. I had an MRI and saw a surgeon fairly quickly, and I had an L3/4 microdiscectomy. I now have permanent weakness in my leg and a dropped foot, use a cane instead of crutches when I go out, and the numbness has remained. But I'm fortunate that I have no more pain, and I was told I came very close to losing bladder/bowel control, so I consider myself very lucky overall. Maybe that's considered to be partial cauda equina syndrome.

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Comment from: nice2meetuu, 55-64 Female (Patient) Published: November 07

At 39 years of age, I had a herniated disc that blew towards the back side and into my spinal column. It started with numbness in one leg and I went to the chiropractor. Then I had numbness in both legs. I went to the emergency room and had an x-ray. I was sent home and told I could go to work and not lift more than 10 pounds. Another 24 hours with the herniated disc and I went to see a neurologist who hit my reflex at my Achilles heel and told me I had severe spinal cord damage. I was sent to have an MRI and after it was read, I was sent immediately into surgery. I was in the hospital for 8 days and rehab for 3 weeks. I walked with hand crutches for a 1 1/2 year. I had severe nerve damage in my legs, and bladder and bowel damage. It had been almost 17 years and I have extreme nerve and muscle pain, 2 lower back bulging disc and arthritis in that area. I walk slightly forward for balance and now have sciatica and an enlarged ligament pressing on the nerves in the lower spinal canal. I am in extreme pain and might be looking at further surgery.

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Comment from: Andyspal, 65-74 Male (Patient) Published: August 21

I acquired CES from an ill-advised and improperly administered lumbar epidural injection. I went 36 hours before surgery was offered, and as a result, I have all of the usual symptoms, including impotence. Thank goodness a neurosurgeon was available or I would never have walked again! My rehab was learning to walk again (although never without a cane or similar) and trying to regain use of my bowels and bladder. I'm very thankful for Lyrica, tramadol, baclofen, and several other drugs that keep the pain somewhat subdued. I am over 65 and was truly looking forward to enjoying retirement...

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Comment from: nami, 45-54 Female (Patient) Published: August 28

While pregnant with my son in 2002, I was diagnosed with sciatica. I was told by my doctor that the sciatica would resolve after my baby was born. After having my son, the sciatica did resolve and for almost 2 years, everything was fine with my back. In July, 2004, I bent over the bathtub to remove my son and I felt a pop. No immediate pain, but by the next day, I was in severe pain. For the next few days, I stayed in bed, took pain medication and muscle relaxers and alternated ice and heat. I went to the emergency room (ER) and got a pain shot and from there, things seemed to be getting better. A day after going to ER, I woke with saddle numbness. I called the ER doctor and informed him of this and he stated that it was from the medicine working through my body. This was on a Wednesday. By Friday, I knew something was very wrong so I got my sister to take me to the ER again. Within two hours of arriving, I was in emergency surgery.

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Comment from: jules, 55-64 Female (Patient) Published: April 14

I am a 59 year old lady. I have had cauda equina syndrome (CES) for 16 years. I am incontinent at my backside, and the pain in my lower back is terrible, but I try to do a bit and then sit so I don"t notice the pain so much. I take 8 senna to go to the toilet and I don"t know I have been, till I near it. It even hurts me to mash the potatoes. People think there"s nothing wrong with me because I don't even limp, but the pain and suffering it causes is devastating. When I say I"ve got a bad back, every step I take is painful, nobody knows.

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Comment from: jacquie, 35-44 Female (Patient) Published: March 28

I had cauda equina 17 months ago and was rushed in for an emergency operation and I have been in chronic pain ever since. I am on so many strong painkillers and attend all sorts of consultants, groups and physiotherapies.

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Cauda Equina Syndrome - Symptoms Question: What were the symptoms of your 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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