Patient Comments: Cauda Equina Syndrome - Experience

Please describe your experience with cauda equina syndrome.

Comment from: dorcasL, 55-64 Female (Patient) Published: October 19

I had L5/S1 spinal fusion in March 2015. For a few months that year I knew I had to heal and did not think so much of symptoms similar to those of cauda equina syndrome. In 2016 I kept trying to be normal but kept feeling worse. I finally got my back surgeon's personal assistant (PA) to allow me to go to physical therapy. The more questions I got asked with it and the more areas the therapist kept focusing on made me search anyone who had similar stories, which led me to here. No, I am not diagnosed with it, no-one will acknowledge or put a name on my problems. Here they are; right foot tingling, constant back pain some actually above L5/S1 and of course below, (severe in sacrum and coccyx), and constant hip pain. Legs are getting weaker all of the time despite trying to keep mobile and exercise. Last but not least is slight urinary incontinence I feel would be worse if I had not had bladder sling and urinary Durasphere injections around urethra muscles, and major problem with fecal incontinence. I cannot say if I have any numbness in lower extremities or buttocks because frankly I have had my lower abdomen cut on three times in my life in the same spot, so below incision it has always been numb anyway. It seems when the back pain feels worse I get cramping in the front which leads to constant runny loose stools. I wonder if that is typical. Ever since the surgery I have had IBS (irritable bowel syndrome) type symptoms that I assumed was due to dairy, but that did not seem consistent, which had me confused. I feel my surgeon does not want to deal with me anymore so I only see his PA who keeps telling me that the last x-rays looked fine and I was mending well. (Last x-rays being January 2015.) I am so tired of dealing with this.

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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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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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