What the hell is this? Why has no one heard of it? And why is it so often misdiagnosed?

Cauda Equina Syndrome—three words I had never heard in my life, yet they’ve completely reshaped it.

So here’s what it is: Cauda Equina Syndrome (CES) is a rare but serious neurological condition caused when the nerves at the base of the spine—the cauda equina—are compressed. These nerves control a lot: your legs, bladder, bowel, and even sexual function. If they’re damaged, the effects can be permanent. It’s considered a medical emergency that usually requires immediate surgery.

In my case, it started with a herniated disc between L5 and S1. I was pregnant, around 16 weeks, and started experiencing sciatica down my left leg. Hoping to get some relief, I went to a chiropractor who specialized in prenatal care. The adjustments were very gentle—barely more than light pressure—but I continued going for several sessions even though I wasn’t really seeing improvement.

Then came December 31, 2019. I was getting out of the car to go to a thyroid ultrasound and lifted my older daughter from her car seat. Suddenly, I felt a pop in my back, and everything changed. The pain moved to my right side and became significantly more intense. My leg went numb—from the calf all the way up my thigh. I somehow made it through the appointment, barely able to walk, and called the chiropractor. Still no relief.

The next day, while changing my daughter’s diaper on the floor, I felt another shift—this time, something was deeply wrong. The numbness spread to my entire groin and right butt cheek. I called both the chiropractor and my midwife. I had an appointment scheduled later that day, but in the hours leading up to it, things escalated: I couldn’t tell when I needed to pee. I would sit on the toilet, urine would come out, but I couldn’t feel it. I couldn’t control it. I only knew I was done when I heard it stop.

When I described this to the chiropractor, she said, “Well, you’re not incontinent, so it’s probably okay.”

But deep down, I knew it wasn’t. I turned to Google, and everywhere I looked I saw the same red-flag warning:

“Cauda Equina Syndrome (CES) is a rare but serious neurological condition where the bundle of nerves at the end of the spinal cord becomes compressed or damaged. These nerves control sensation and movement in the legs, bladder, bowel, and sexual function. CES is a medical emergency. If left untreated, it can cause permanent paralysis or loss of bladder and bowel control. Immediate surgery is often required.”

Despite seeing multiple medical professionals, it was one friend—a chiropractor—who finally urged me to go to the ER. I listened. What followed were five long days of frustration, dismissal, and gaslighting. I was in severe pain, losing function, and no one seemed to take it seriously. I was ultimately discharged with no diagnosis, no answers, and no improvement.

It wasn’t until my OB-GYN referred me to a surgeon that everything changed. He recognized the urgency of my symptoms right away—it was Cauda Equina Syndrome, and I needed surgery immediately. Just 12 hours later, I was on the operating table.

The surgeon and his physician assistant became two of the most trusted people in my life. I’ve never met anyone in medicine more genuine, compassionate, and skilled. Even now, five years later, I still turn to them when I have questions, and I’m always grateful for their care.

The surgery relieved the intense pain, and after about six months, I slowly regained the ability to feel when I needed to urinate. But some things never returned: I’ve lost sexual function and still struggle with normal bowel movements. This is my reality now—a new normal.

There are still moments when I feel broken, less than whole. But I remind myself daily that I’m still here. Still healing. Still finding strength in this body, even when it doesn’t work the way it used to. I try to hold onto that and move forward—grateful, scarred, and still growing.

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