From Provider to Patient: My Face, My Story

I never thought I’d be writing about surviving brain surgery in my early 30s. For a long time, I didn’t even realize something was wrong. I just knew my body was starting to feel… off.

Subtle balance issues. A weird tilt when walking. Falling episodes. Nausea that didn’t quite make sense. A growing sensitivity to motion, light, and sound. I even ignored a dream I’d had months prior to my diagnosis that showed me having brain surgery after following a yellow brick road of never-ending doctors and therapists. Nothing was adding up.

It took years of escalating symptoms like vertigo attacks, facial pressure, hearing distortions, right-sided jaw pain (leading to a TMJ diagnosis), intense sensory overload, and emotional changes before I finally received the correct MRI (with and without contrast of the internal auditory canal and posterior fossa). That scan changed everything. Medical professionals could no longer dismiss my symptoms or label them as “stress” or “allergy” related.

After multiple urgent care visits and misdiagnoses, a hearing test, and the diagnostic MRI, I was told I had an acoustic neuroma, a benign tumor on the vestibulocochlear nerve (8th cranial nerve). But during my 8-hour brain surgery just three weeks ago, they discovered something even rarer: a facial nerve schwannoma extending into the cerebellopontine angle (CPA) of my brain. I was told I’m one of the only patients they’ve seen with this type of tumor. When I try to look up statistics, almost nothing comes up. It accounts for less than 1% of all temporal bone tumors.

Recovery has been filled with ups and downs. I hadn’t anticipated waking up from surgery only to find out the tumor was still there. I remember the bittersweet moment when my family explained what had happened. The tumor type prevented the neurosurgeons from removing it. Instead, they decompressed my 7th (facial) and 8th (balance and hearing) cranial nerves to create more room. These nerves run together in the narrow internal auditory canal of the temporal bone.

Since surgery, I’ve noticed some relief. My nausea and motion sickness have improved now that my balance nerve is no longer compressing the already-damaged facial nerve. My balance issues persist, but that’s to be expected. The tumor hasn’t just affected my hearing or equilibrium. It hijacked my nervous system, distorted my vision, amplified my ADHD, and completely changed the way I process sound, light, and movement.

I’m a speech language pathologist. I’ve worked with clients who have sensory processing disorders and neurological conditions. I never imagined I’d become one myself. My recovery has included brutal head and neck pain, post-op brain fog, emotional flooding, insomnia, and a disorienting disconnect from my own body. I also experienced swallowing difficulties after intubation, a painful tongue injury, and oral thrush caused by the combination of prolonged surgery and antibiotics.

Nothing about recovery has been linear. I spent 11 days in the hospital, split between the ICU and the neurology floor. I’ve had to advocate for myself in a medical system that doesn’t always understand the nuance of rare brain tumors. But I know my experience is real, and so do the people who’ve seen me fight every day to overcome this diagnosis.

Now I’m faced with the hardest part… explaining to friends and family that the tumor remains. That treatment isn’t over. That, if left alone, this tumor could ultimately paralyze the entire right side of my face. I’m exploring radiation as the next step, but that too comes with major risks such as permanent facial weakness, hearing loss, and more. How do you avoid the inevitable when your facial nerve is under threat either way? A face that’s always been “mine” suddenly isn’t anymore.

Living in the gray has been the single most debilitating, life-altering, yet profoundly inspiring obstacle I’ve ever faced (no pun intended). This condition has taught me to celebrate small wins and accept defeat without shame. I finally understand what people mean when they say “let it go.” 

But I can still love the parts of me that haven’t been lost. I’ve always had a fierce softness when it comes to caring for others, staying active, and connecting with nature. I’m grateful for what this experience has taught me about resilience and compassion for myself, so I can one day offer healing support to other survivors when they need it most.

In what’s proven to be a surreal Wizard of Oz-like journey to find someone who could “fix” my brain, I’ve realized I’m not broken. I’m becoming my true self as I walk the yellow brick road to finding health and happiness, on my own terms. I’ll continue to keep advocating, fighting, healing, learning about, and supporting brain tumor awareness.

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Opinions expressed within this story belong solely to the author and do not reflect the views or opinions of the National Brain Tumor Society.