Patient Comments: Cauda Equina Syndrome - Experience

Please describe your experience with cauda equina syndrome.

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: 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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