Patient Comments: Cauda Equina Syndrome - Experience

Question:

Please describe your experience with cauda equina syndrome. Submit Your Comment

Comment from: Left me hanging for , 35-44 Female (Patient) Published: September 21

I can't use arms in a sitting position, I get excruciating pain in my lower back. I have to walk very slow, and take very small steps. When sitting from standing position I get horrible pain. I can't stand in one place for more than four minutes, due to pain. I can't bend over due to pain. I've had cauda equina syndrome for five years. My sensation to urinate is all messed up. Doctors have not offered pain medicines even when I ask. Feels like they want me to be paralyzed. Five years later offering surgery!

Comment from: Autumn, 65-74 Female (Caregiver) Published: July 31

I have stabbing pain in the lumbar 5 area from cauda equina syndrome. I am numb from the waist down, can wiggle toes of right foot. I also have incontinent bowel and bladder. I am starting rehabilitation tomorrow.

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.

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.

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.

Comment from: Rufus, 55-64 Female (Patient) Published: October 11

I went to the emergency room today presenting with all of the symptoms of cauda equina syndrome and the doctor thought I could have this syndrome but only did a rectal exam. I said that I thought I should have an MRI but he said it was closed because of it being Sunday and I should follow up next week with my doctor. I am numb from the waist down and can't urinate but he refused to call in someone to do an MRI.

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.

SLIDESHOW

Sciatica Symptoms, Causes, Treatments See Slideshow
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...

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.

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.

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.

IMAGES

Cauda Equina Syndrome See brain scan pictures of Alzheimer's and types of dementia See Images
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