In 2015, at the age of 27, a routine phone call led me to an unexpected journey with an ENT doctor, or as I playfully think of him now, my “Lucky The Head Doctor.” I had noticed difficulty hearing on my left ear during phone conversations, a seemingly minor issue that turned out to be the first step in discovering a rare condition. The doctor suggested that the hearing loss could be due to a sudden loud noise or a virus. However, to be thorough, he recommended an MRI to rule out a less likely possibility: an acoustic neuroma, also known as a vestibular schwannoma, a rare brain tumor.
He reassured me, “It’s probably nothing. Acoustic neuromas are incredibly rare. In my entire career, I’ve only encountered about six cases.”
I became case number seven.
Throughout my consultations and treatments, I often heard well-meaning but somewhat jarring comments from medical professionals, friends, and family. Statements like, “If you must have a brain tumor, this is the best one to have,” or “You’re so lucky it’s not cancerous,” were common. While these remarks were intended to offer comfort, being diagnosed with a rare brain tumor felt anything but lucky. It felt more like an improbable misfortune.
Fortunately, my mother, a benign brain tumor survivor herself, was an incredible source of support throughout this ordeal. Her understanding and advice were invaluable, making me feel less alone in this daunting experience. Inspired by her support and wanting to give back, I decided to support others navigating similar brain tumor journeys. For me, volunteering became a way to transform a personal hardship into something positive and meaningful. I started volunteering with the Acoustic Neuroma Association, contributing in various ways. Helping fellow acoustic neuroma warriors has brought immense joy and purpose to my life.
Navigating Life with Single-Sided Deafness
As a result of the acoustic neuroma and its treatment, I live with single-sided deafness. Adapting to motherhood and my career with hearing loss has been a significant learning process. I was a mother to a toddler when diagnosed, and now I have two children, ages 10 and 5.
This experience ignited a passion within me for hearing loss awareness and assistive hearing devices. I launched a blog, Lucky Brain Tumor, as a platform to offer support, encouragement, and resources to others on their brain tumor journeys. I also aim to use it as an advocacy tool for individuals with hearing loss. My hope is that it becomes a space where people feel understood, empowered, and more optimistic.
Access to adequate support and assistance for hearing loss is often lacking. I firmly believe that the societal stigma surrounding hearing loss and hearing devices creates unnecessary and significant barriers for those affected. Insurance companies should recognize hearing aids as essential medical devices, not cosmetic accessories, and provide coverage accordingly.
It’s crucial for young people to feel confident and comfortable using hearing assistance devices. Collectively, we can redefine the narrative around hearing aids and promote greater acceptance and accessibility.
My Experience with a BAHA Device
I opted for a bone-anchored hearing aid, or BAHA, which is less common than traditional hearing aids or cochlear implants. Consequently, I often receive inquiries about it.
A BAHA device functions by capturing sound vibrations and transmitting them through the skull—via bone conduction—from my deaf side to my hearing ear. The functioning cochlea in my hearing ear then relays the sound to the brain via the auditory nerve. By transmitting sound waves through the skull, the middle ear is completely bypassed.
The BAHA device can be attached to the head in various ways. Mine is a clip-on device, but they can also be attached magnetically. Non-surgical options, using a headband or adhesive, are also available.
