I was diagnosed with cauda equina syndrome on Friday the 13th.
One woman&#x0027;s story of being diagnosed with cauda equina syndrome
Mary Cresse has written for USA Today, The Boston Globe, and the San Francisco Chronicle.
On Friday, April 13, 2007, I came home from work with a terrific backache. It was marked by spasms and cramps so severe that I could barely make it up the steps. After a warm bath, I popped three Advil and went to bed. At 5 a.m., I awoke to find my body was numb below my left hip. I pulled on my clothes, crawled to my car (why I didn't call an ambulance, I still don't know) and drove to the hospital. Within hours, I was in emergency surgery to relieve early symptoms of cauda equina syndrome (CES).
CES results when the nerve roots at the base of your spine are compressed. This bundle of roots—from the Latin “cauda equina,” or “horse's tail,” for the way they splay out from the spine—governs the sensation and function of everything below your waist. CES is a medical emergency; if surgery to relieve the pressure is not performed immediately, you could lose total or partial function of your bladder, bowel, sexual organs, and legs. Causes include trauma, such as a gunshot wound; a lesion, such as a blood clot; arthritis; complications from cancer; complications from spinal anesthesia; or a ruptured disc.
In my case, it was a ruptured disc. My medical report said, “an MRI showed a large left paracentral L3/L4 disc [whose] severe central disc extrusion [is compressing] the cauda equina and traversing L4 nerve roots.” No wonder I couldn't feel anything: Disc pressure narrowed my spinal canal from 14mm to 4mm. (See photo.)
Doctors performed all sorts of tests. They pricked my toes with a pin to test sensation; tested the strength and sensitivity of my extremities; and asked me if I knew where I was and what was happening. Then they inserted a catheter to see if I was retaining urine. This would help them ascertain if nerves sending messages to my bladder were firing properly (they weren't).
Into surgery I went. Doctors removed part of the bulging disk, and then trimmed area vertebrae to widen the spinal canal and relieve pressure.
I awoke to good news. All was normal except damage to my left leg and foot. But most of my left shin was numb and I could barely wiggle my toes; it would be 11 months before I could lift the ball of my foot. Over the next two years, I saw more than 16 clinicians, including neurosurgeons, neurologists, physiatrists, physical therapists, occupational therapists, my (amazingly supportive) primary care doctor, and, perhaps most importantly, the psychiatrist!
Today, I walk almost normally. If fatigued, I may limp slightly, and I can't run or dance. My toes go numb after 30 minutes of walking, and I waver on certain uneven surfaces. The numbness in my shin has shrunk to a tiny patch above my left ankle.
Still, I am not complaining. As a journalist, I know all too well how lucky I am, having written stories about the flaws in our health care system. CES worsens greatly over a short period of time: What if I had landed in one of our nation's many overcrowded, understaffed emergency rooms and not been examined right away? What if I had been misdiagnosed by a harried emergency department physician, or had no health insurance?
This isn't to say there weren't nasty surprises. One member of my own family didn't even bother to answer a call from the hospital. My employers also acted abominably. After scolding me for being late with a project that was due while I was out on disability, they refused my requests to lessen my workload in light of the fact that I was struggling to walk.
After dealing with CES, I've made some changes in my life. I started writing about rehab. I no longer have relationships with people who weren't there for me during my recovery. And I routinely confront those who invade spaces set aside for the disabled, like cyclists who lock their bikes to the rails of ramps. Once, when I was on my cane, a man pushing a baby stroller told me to stand free of the automatic door so he could get through.
He soon learned that although my nerves may misfire, my mouth doesn't.
CES gave me many blessings. I have a new insight into human character, a renewed desire to help improve our health care system, and an appreciation of how both fate and faith can shape one's health and well-being.