Valerie's story

    cauda equina syndrome

 

Valerie had been struggling with severe low back pain for about two weeks when her condition reached a tipping point. Awakening in the early morning hours to use the bathroom, Valerie discovered that her entire pelvic area was numb. Shocked but not overly alarmed, Valerie went back to bed.

Later that same day, she was still numb and now becoming increasingly concerned. Still, she was able to begin the day as planned, driving herself to Mercy Mt. Airy Hospital for a medical appointment unrelated to her back pain and unexplained numbness. But Valerie barely made it from her car to the hospital door.

"I was gasping, short of breath, and the pain in my back was very bad," Valerie recalls. "I had terrible numbness in the 'saddle region,' and at this point, I felt so heavy. The pain and numbness went down the back of my right leg to my kneecap and underneath my foot. I was in excruciating back pain."

By the end of her appointment, Valerie could not take another step. She was taken to the emergency room in a wheelchair.

The hospital’s emergency department team, recognizing the signs of a spinal emergency, ordered an MRI. The MRI confirmed their suspicions: Valerie had suffered a massive disc herniation in her lower back. The disc was protruding so severely that it had created an emergency situation known as cauda equina: a compression of the bundle of nerve roots that extend below the spinal cord like the tail of a horse. (Cauda equina means horse’s tail in Latin.) These nerves transport messages to and from the pelvic organs, legs and feet, and if they remain squeezed for too long, permanent damage can occur. That can mean incontinence, permanent loss of sensation in the pelvic area, and paralysis.

The Mercy Mt. Airy emergency physicians asked Valerie where she wanted to be transferred for spine surgery. Valerie, a former medical secretary, called a healthcare colleague, who recommended Dr. William Tobler, a spine specialist with the Mayfield Clinic. Valerie requested that Dr. Tobler perform her surgery, and she was subsequently transferred to Good Samaritan Hospital.

Each year Dr. Tobler treats four or five patients who have suffered cauda equina syndrome. (The Mayfield Clinic's spine specialists collectively treat about 15 cases a year.)

"The symptoms of cauda equina syndrome in some cases can come on slowly," Dr. Tobler says. "But the worst kind of cauda equina syndrome occurs suddenly. It typically occurs in someone who has a sudden disc herniation, and it’s usually a massive disc herniation that suddenly compresses all those nerves at that lower level of the spine that not only go to the legs but also go to the bowel and bladder and sexual organs."

The herniation can occur spontaneously, as it did in Valerie’s case, or it can be caused by a fall or trauma.

"Most people think that back problems are longstanding, and they don’t recognize that occasionally a spine problem can be acute, like a stroke or heart attack," Dr. Tobler says. "Everybody knows that a heart attack could lead to serious consequences or death within a short period of time. And over the last decade, neurosurgeons and neurologists have tried to educate the public that a stroke can be as urgent as a heart attack.

"Cauda equina syndrome is one of those rare events that could be as suddenly urgent as a stroke or heart attack. Hours can make a difference. Although most disc herniations present with pain, a really bad disc herniation can cause a cauda equine syndrome within six to 10 hours."

Now hospitalized, Valerie tried to tell the junior physician who first saw her on Saturday morning that Dr. Tobler didn’t need to give up his weekend to take care of her. "Being a medical secretary and knowing how hard the doctors work, I was telling him they could wait until Monday," she recalls. "I said, ‘It’s the weekend, go play golf, don’t worry, I’m safe here in the hospital, it’s Saturday.’"

The junior physician smiled and said, calmly, "No, we’re going to do your surgery today."

Fortunately for Valerie, her surgery took place just 24 hours after her massive herniation. The procedure was a discectomy -- the removal of the offending disc -- and it immediately eliminated the pressure that was squeezing her spinal nerves.

By Tuesday, fully cognizant of her close call, Valerie was grateful to discover that she could still use the bathroom of her own accord. Patients who suffer irreparable damage to the nerves must learn to catheterize themselves in order to urinate. Valerie went home that day.

Four months later, Valerie underwent a second procedure to strengthen her spine and eliminate continuing lower back pain. Dr. Tobler performed a two-level AxiaLIF fusion, fusing the fourth and fifth vertebrae of the lumbar spine (L4-5) and the first vertebra of the sacrum (S-1), the triangular-shaped bone below the lumbar spine. Valerie was up and walking the next day.

A year after her initial hospitalization, Valerie underwent yet another procedure: this time the implantation of a spinal cord stimulator to curb lingering pain in the sacral area. George Mandybur, MD, a Mayfield Clinic neurosurgeon, implanted a stimulator, a device that interrupts pain signals and prevents them from reaching the brain.

Valerie, who is back at work part-time, continues to have symptoms caused by the trauma that occurred to her lumbar spine during the cauda equina episode. She has permanent numbness in her saddle area and in the backs of her legs, and she has some pain in her sacroiliac joints, where the sacrum connects to the two large iliac bones of the pelvis. But she considers herself fortunate.

"I’ll take the numbness over pain any day," she says. "The lower back pain was gone after he did the fusion. I still have a limp and some of the sacroiliac joint pain, but nothing compared to that back pain, which was horrific. I consider myself so blessed to have gotten the surgery in 24 hours, not knowing the seriousness of what I had."

Her message to anyone who experiences sudden numbness in the saddle area because of severe lower back pain echoes that of Dr. Tobler: "Don’t wait," she says. "Cauda equina is an emergency."

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Valerie's message to anyone who experiences sudden numbness in the saddle area because of severe lower back pain echoes that of Dr. Tobler: "Don’t wait," she says. "Cauda equina is an emergency."

 

Valerie invites individuals affected by cauda equina syndrome who wish to form a support group to contact her at (513) 501-2889  or [email protected].
At present, there is no support group for people with cauda equina in the Greater Cincinnati area.