The Tale of the Horse’s Tail or What Is Cauda Equina Syndrome?

A rare spinal cord injury to an obscure bundle of nerves comes with a series of frightening and painful conditions. But to most witnesses, people with cauda equina syndrome don’t seem to have any disabilities at all.

by Your Friend Flicka

After years of working for a corporation, I felt I wanted to do something more meaningful with my life. So I went to graduate school to study rehabilitation counseling, a field working with individuals with disabilities.

In my first semester, a professor who was head of the department was able to connect the disability rights movement to other civil rights movements for me. I learned that people with disabilities had been infantilized or put on pedestals or locked away and out of sight. I learned about the hard not-yet-won fight for disability rights and the attacks on the Americans with Disabilities Act. This made me angry in an abstract way; in the same way that I don’t like to see any group of people singled out and oppressed for what they look like or how they behave.

I learned about how certain disabilities actually affect functioning. I was shocked. I had never thought about how the spinal cord really connected the brain to all the intimate functions of the body. It was laid out for me in charts and diagrams-all abstract, but sinking in.

Health Problems

At the beginning of my second semester of my second year, I woke up one morning with a backache. After about a week of steady pain, I went to my HMO primary care physician (PCP), an old- fashioned woman, who prescribed physical therapy, Naprosyn® (a nonsteroidal anti-infl ammatory drug, or NSAID) and a CT scan.

My back got progressively worse. Walking a block and a half left me sweating, nauseated, doubled over in pain. My PCP referred me to an HMO neurologist who prescribed extra strength Vicodin®; it barely touched my pain. Finally, I was sent to an HMO orthopedic surgeon who prescribed a series of epidural injections, with bed rest in-between. They took a large-bore needle and injected medication under the dura layer of my spinal cord. This did not work. The next trick, steroids taken orally, was very difficult and may have caused a bleeding ulcer.

What they were trying to do, apparently, was repair a lesion of unknown origin that had compressed my cauda equina- literally, “horse’s tail”-a bundle of nerve roots that trail, as the Latin name suggests, near the base of the spinal column in the lumbar or sacral region (its location varies from individual to individual). When this obscure part of the human anatomy is injured, it results in a syndrome of conditions affecting the legs, bowels, bladder, and genitals. But I didn’t know that at the time.

Calm Before the Storm

Despite my treatments, I woke up one day feeling worse than ever. After trying to go to my practicum despite the pain, I came home early and took a nap. When I woke up, the pain was magically gone. I stood and my knees buckled, but I was able to actually get up and walk.

The next day, I saw one of the orthopedic surgeons, who immediately scheduled surgery. I wondered, why now? The very next morning, I woke up to discover that I had wet the bed. No one had warned me of the symptoms, but later, while I was in rehab, I visited the library and read about back injuries and recognized incontinence as a bad sign.

My very supportive partner took me by cab to the emergency center of the Hospital for Joint Diseases at New York University. I had a CT scan and discogram and various tests and fi nally had surgery that evening. I first had to have four units of blood because my blood count was dangerously low. It was a bleeding ulcer from those NSAIDs.

The day after surgery was Sunday. I was able to take things in. I thought I was finally going to get better. Little did I know!

Monday, a urologist showed up to do a test-apparently to see if I could pee on my own. The answer was no. Hmmm.

The next major test I underwent was an electromyography (EMG), a test I wouldn’t wish on anyone. I was taken to an underheated room. A nurse had just given me or tried to give me an enema with no result. I tried to communicate this to the neurologist who did not seem to care whether there was about to be shit all over his sensitive equipment. The neurologist proceeded to insert needles in both of my legs, primarily the bony parts, the shins, the ankles, the feet-then send electrical stimulation through them to see what registered on his machine. Not much, apparently. It took at least an hour and could have been mistaken for torture from the medieval times. Then the neurologist left the room, and a female colleague entered and placed an electrode over my genitals. I thought, “Here we go.” But nothing.

Shortly, the neurologist reentered the room and said bluntly, “You are permanently disabled.”

“What do I do now?” I asked. He had no answer. He probably should have left this kind of news to someone else.

I was wheeled back to my room. Unable to control my bowels and bladder, unable to stand without looking like a junkie on a nod, unable to walk without a wheeled walker, unable to feel my genitals… It seemed like the lowest point of my life.

Living with Cauda Equina Syndrome

I stayed in the hospital for two weeks, undergoing PT. They taught me to walk with a cane, shakily. I still have problems with proprioception 12 years later and can and do fall down easily. I learned how to self-catheterize, although they taught me with the hospital equipment which involved laying down and using a mirror which is not very handy for work. Later on I found a woman urologist who gave me the right kind of catheters and I learned to do it over a toilet and eventually learned to do without. I still can’t predict when I have to go to the bathroom by feeling, but have to depend on a schedule and diarrhea really can ruin my day or week! Sexuality is entirely different for me as I have no feeling in my genitals.

I belong to a support group online, the Cauda Equina Support Group. There are many of us, but we are spread out, and by the nature of our disability, we don’t elaborate on the details. But we have a lot of fun when we talk online and a lot of rowdy humor.

I have a hidden disability. I walk with a cane only outdoors. Inside I’m fine unless the lights are out or my eyes are closed. It irks me when someone says, “You don’t need that cane.” I have a disability that has changed my life in significant ways. My disability takes up time that I used to have for other things. I spend money on it that I used to have for other things. It has changed my relationship in significant ways. It has changed the way I see the world.

The author of this article has requested to remain anonymous.