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READ MOREPublished on April 10, 2025 in Share Your Story
Guest Author: Allison L. in Maryland
2025 was supposed to be my year. My husband and I had just bought a home in 2024, eager to settle in, be closer to family, and start our life together. Everything seemed to be falling into place until suddenly, it wasn’t.
In January 2025, I woke in the middle of the night feeling like my world was spinning – vertigo, nausea, vomiting, and a clogged ear. Panic-stricken and hyperventilating, I woke my husband and literally blurted out, “What if I have a brain tumor?” He told me not to jump to conclusions. We assumed it was the onset of a stomach bug and eventually went back to sleep, completely unaware of the reality we were about to face.
The next day, my condition worsened. I couldn’t keep anything down, and my balance deteriorated to the point I needed help walking even a few steps. Dehydration ultimately sent us to urgent care, where IV fluids barely made a dent in my symptoms. The doctor checked my ear canal, found nothing abnormal, and suggested it could be an inner ear problem.
A visit to the ENT and a failed hearing test later, I was first diagnosed with sudden sensorineural hearing loss. I immediately began aggressive steroid treatments – oral and injectable – in a desperate attempt to restore hearing. But after four weeks, there was no improvement. I was still profoundly deaf in my left ear. As standard protocol, an MRI was scheduled. I already knew something bigger was going on. I could feel it.
Approximately 1 in 100,000 Americans develop an acoustic neuroma each year, according to the NIH. I knew I was that one. The scan confirmed my feeling and found this tumor was pressing against my vestibulocochlear nerve, which is responsible for balance and hearing. Despite its small size and noncancerous nature, it had already taken my hearing for good.
The diagnosis was terrifying, yet I felt a brief wave of relief. I had obsessed for weeks over what caused my hearing loss, whether it would come back, and if I could’ve prevented it. Now I had answers. But that relief quickly turned into fear.
Friends and family tried to comfort me with, “At least it’s benign!” – a phrase that, while well-intentioned and a positive perspective, left me conflicted. What hit me hardest was how unfairly minimizing it all felt. “Benign” sounds harmless. Like it’s no big deal. But the truth is, it is a big deal. Just because it isn’t cancer doesn’t mean it isn’t devastating. It didn’t mean what I was about to go through would be painless or easy.
Yes, of course, I was fortunate it was operable and noncancerous – but that didn’t erase the damage. The tumor had already taken my hearing, affected my balance, and could threaten nearby structures if it continued to grow. What lay ahead was a high-risk, complex surgery with no guarantees.
Amid the chaos, one thing fell into place. Thanks to my dad’s work at the National Brain Tumor Society and the generous involvement of David Arons, I was quickly connected to some of the best specialists for this type of tumor.
One neurosurgeon stood out right away. Within an hour of receiving an email on my behalf – on a Friday night, no less – he called me from his personal cell phone.
“I would want someone to call me,” he said.
Of course, he came highly recommended, but it was that one line – that empathy – that gave me the comfort I so desperately needed. After several consults and an in-person meeting with him and the supporting neuro-otologist, I knew I had my team.
Heading into surgery, two thoughts consumed me: What if they don’t get all of it, and I live with this forever? Or what if I lose function in my face? The facial nerve runs right next to the tumor location, and I knew that weakness or even paralysis were very real risks.
My first memory after waking up was my surgeon asking me to smile and squeeze my eyes shut. I could. Then I asked, “Did you get it all?” And he replied, “I got the whole damn thing.”
That moment – relief, shock, gratitude, everything at once – is forever etched in my mind. I was still here. And I could still smile.
The truth is, that moment was only the beginning. What followed was harder than I ever imagined. A few days after the 8-hour brain surgery, I needed another 5-hour procedure to address a complication. That second surgery hit me so hard that it felt like starting from scratch. I had to relearn how to walk – not once, but twice – after each operation. And, as if that wasn’t enough, I had a severe allergic reaction to a drug used during the second procedure. Setback after setback tested every part of me – physically and emotionally.
After a week and a half in the hospital, I am finally home. Recovery has been tough, and healing is far from over. I’ve started vestibular physical therapy and will be spending the next couple of months rebuilding my strength.
While 2025 did not start the way I had planned, and nothing about it has been easy, this tumor isn’t the end of my story – it’s the beginning of a new chapter. I’m learning to adjust to a “new normal.” It’s hard. It’s single-sided deaf. But it’s mine.
No, I wouldn’t have chosen this path. But I’m certainly stronger than I realized. I see life, family, and health through a sharper lens now. I feel the little things deeper – the quiet moments, the people who show up, and the fact that I’m still here.
We don’t get to choose our mountains in life, but we do get to choose how we climb them. And thanks to my support system, I have the strength to keep climbing – one step at a time.
TAGGED WITH: acoustic neuroma
Opinions expressed within this story belong solely to the author and do not reflect the views or opinions of the National Brain Tumor Society.