My Symptoms

My symptoms first began in 2009, when I was 25. Out of nowhere, I started experiencing sudden vertigo spells. I had no idea what was causing them, so I underwent an MRI. That’s when I was told I had Chiari Malformation Type 1—but the doctor quickly dismissed it as nothing to worry about. Instead, I was told the dizziness was likely psychosomatic, and I was prescribed vestibular physical therapy and antidepressants before being sent on my way.

Fast forward to April 2024, and things began to shift. I started experiencing headaches in the back right side of my head, about 3–4 times a week. These headaches always came on during activity—after working out, lifting weights, playing beach volleyball, or even walking up stairs or hills. Electrolytes helped a little, but the pain was persistent. Around the same time, I was having daily tingling and numbness in my hands, ringing in my ears several times a week, and worsening motion sensitivity—especially when hiking, going up or down stairs, or riding in the car as a passenger.

The truth is, I’d been living with many of these symptoms for as long as I could remember. But the pulsating pain in the back of my head was new—and alarming. That’s what pushed me to get another MRI.

I also realized how sensitive to heat I had become. I’d get exhausted more easily than others, and felt chronically fatigued. But for years, I brushed it off, assuming this was just how my body worked. I thought it was normal.

Then my doctor said something that really stuck with me:

“You don’t know what normal feels like because you’ve never had it.”
“Every time your heart beats, it’s seven times harder on you than on someone with a non-compressed brainstem.”

That hit me like a ton of bricks. I wasn’t lazy or overly sensitive—I was compensating. I had spent years pushing through symptoms that I’d unknowingly normalized.

Even though my symptoms weren’t considered debilitating, I was living a life that constantly required adaptation. I was working out five days a week, staying active, and making things work—but I finally saw the cost of that resilience.

After a lot of research, second opinions, and back-and-forth, I made the decision to move forward with surgery. My neurosurgeon confirmed that my Chiari herniation measured 19.7 mm, which is considered severe. He told me I’d likely need surgery eventually—and rather than waiting until I was older and symptomatic beyond coping, I chose to do it on my own terms.

At age 41, I planned carefully, lined up support, and did everything I could to make the journey as smooth as possible. I wasn’t forced into this; I chose it—because I knew it was time.

2009 MRI pictured below: 

April 2025 MRI below: 19.7 mm with no syrinx thankfully