Share Your Story – Expression of Interest
Sharing your acoustic neuroma journey with our ANAC community can help reduce feelings of isolation and provide hope, comfort, empathy and understanding to others facing similar challenges. Collectively, stories are also powerful tools for raising awareness, as well as educating the public and medical community about acoustic neuromas, improving patient-centered care and encouraging research into better quality-of-life treatments.
My Uninvited Guest: Judit's Story
In early 2020, an unexpected MRI revealed a benign acoustic neuroma, setting Judit on a journey through missteps, international research, and finally, gamma knife treatment—with hope, support, and hard-earned lessons along the way.
40 years Post-Op: Rosaline's Story
At thirty-nine, Rosaline’s life changed forever when an acoustic neuroma diagnosis led to a marathon surgery that left her with single-sided deafness, facial paralysis, and lasting challenges with vision and memory. What followed was not only a long physical recovery but also the unraveling of her marriage, the reinvention of her career, and a deep search for resilience. With courage, humour, and faith, Rosaline rebuilt her life—choosing to face limitations with determination, acceptance, and love. Now, forty years later, she shares her journey in the hope that others will feel less alone and more inspired to keep moving forward, even when the path wobbles.
Gavin's Story: Living with & Preparing to Evict My AN, “Frank”...but When?
A concussion from a game of tag led to the discovery of an acoustic neuroma — a diagnosis already familiar since one of his parents also has the condition. After weighing the risks of radiation and surgery, and finding strength through ANAC’s support network, he prepared for brain surgery during the challenges of the COVID-19 pandemic while balancing new parenthood and hope for recovery.
Tumour of Opportunity: Brittany's Story
At just 25, sudden hearing loss led to the discovery of a massive acoustic neuroma pressing on her brainstem. After life-saving surgery left her deaf in one ear and facing facial paralysis, she transformed her experience into purpose—becoming a Hearing Instrument Specialist to help others, and finding strength through the ANAC community.
Docs Team Up for a Kid: Ben's Story
It started with noticing hearing loss in his Grade 9 homeroom classroom, but what seemed minor soon revealed a rare acoustic neuroma. With the support of ANAC, expert doctors, and his family, he faced surgery as a teenager and is now learning to live fully—hockey, school, and all—while adapting to life with hearing loss.
Shelley's Story: A Journey Toward an Acoustic Neuroma Treatment Plan
What began as a persistent earache led to the discovery of a rare acoustic neuroma. Faced with complex treatment options, she navigated a maze of research, second opinions, and international technologies, ultimately finding guidance and support through ANAC. Her story is one of informed decision-making, perseverance, and taking control of her own path to preserve hearing, balance, and quality of life.
Lessons Learned: Anna's Navigation through her AN Diagnosis
After years of unexplained hearing loss and tinnitus, a mother of two was finally diagnosed with a 2.2 cm acoustic neuroma. Through surgery, rehabilitation, and the support of ANAC, she navigated single-sided deafness and regained balance, learning to embrace a new normal while cherishing her family and life.
The Silver Lining: Nicole's Journey with an AN
After noticing numbness and hearing loss, a veteran nurse discovered she had a 3 cm acoustic neuroma compressing her brainstem. Facing urgent surgery and CyberKnife radiosurgery, she navigated treatment with courage and optimism. Today, she enjoys retirement, improved balance, and the joy of life post-recovery.
My Acoustic Neuroma Experience: Bill's Journey Down a Bumpy Road
“After experiencing double vision while driving, he was unexpectedly diagnosed with an acoustic neuroma in his good ear. With hearing preservation a priority, he chose Gamma Knife at Toronto Western Hospital in 2013 and again in 2018 after regrowth. Alongside balance challenges, hearing loss, and taste changes, he continues to adapt with vestibular therapy, hearing technology, and Nordic pole walking. Now 79, he remains grateful for life’s possibilities and contributes to a Mayo Clinic study on acoustic neuroma quality of life.
Chelsea's AN Experience: From Diagnosis to Recovery
A PhD music student in Toronto first noticed tingling, facial zaps, and hearing changes on the left side of her head, which were initially attributed to overuse of her instrument. Months later, after careful monitoring and multiple opinions, she was diagnosed with a 2–2.5 cm acoustic neuroma. Following translabyrinthine surgery at Sunnybrook Hospital, she preserved her facial nerve and gradually regained balance and mobility. Now navigating the ongoing adjustments of single-sided deafness, she emphasizes the importance of support networks, patient education, and connecting with others who truly understand the acoustic neuroma journey.
Pat Greenwell’s Acoustic Neuroma Diary: Her AN Journey from 1997 to Now
After attributing dizziness and hearing loss to chemotherapy, a breast cancer survivor in Edmonton finally received a shocking diagnosis: a 3 cm acoustic neuroma with hydrocephalus. Following emergency shunt surgery and a 14-hour brain surgery in Toronto, she faced temporary facial paralysis, relearned balance, and embraced life with single-sided deafness. Today, she celebrates gratitude, family, and the joys of retirement on the BC coast.
Redefining a Smile: John's Marathon Journey Toward Reanimation
After being diagnosed with a large acoustic neuroma in 2017, John underwent successful tumour removal followed by facial reanimation surgery to address lasting facial paralysis. His journey highlights resilience, adaptation, and optimism during a long but rewarding recovery.
Shared Wisdom: Dr. Rutka’s Guidance and Judy Haust’s Acoustic Neuroma Story
When Judy Haust was first diagnosed with an acoustic neuroma, Dr. John Rutka’s thoughtful letter outlining her diagnosis and treatment options became a source of reassurance and clarity. Years later, Judy reflects back in her reply, sharing how his guidance shaped her decision to embrace a “wait and scan” approach, and how ANAC’s support network strengthened her journey. Together, their words highlight the balance between medical expertise and lived experience in navigating acoustic neuroma.
Trekking to the 2018 Symposium: Elizabeth’s Pathway to Managing Her AN
Elizabeth, a retired kindergarten teacher, was diagnosed with a small acoustic neuroma in 2018 after years of vision and balance challenges. With determination and support, she embraced vestibular therapy, adaptive technologies, and community connections to create a “new normal” that allows her to stay active and engaged.
What a Difference a Day Makes! Ruth's AN Journey
Diagnosed with a large acoustic neuroma in 2017, 49-year-old Ruth faced a year of emotional turmoil before undergoing successful surgery at Toronto Western. With the support of her family, surgeon, and the AN community, she’s embraced recovery and now encourages others to stay positive and trust their strength — because truly, what a difference a day makes.
Mitzi Jo's Story: So What! I’ve Got a Brain Tumour
After sudden hearing loss in 2017, a private MRI confirmed what doctors had dismissed—Mitizi Jo had a large acoustic neuroma. Fueled by frustration, humour, and fierce determination, she found strength through research, support from ANAC, and the care of her medical team. Her journey is a testament to self-advocacy, resilience, and the power of laughter.
Alex's Story: A Doctor Becomes a Patient
After hearing loss and buzzing in his right ear, he found invaluable support through ANAC and the Kitchener–Waterloo Support Group. Following careful consultations with Dr. Zadeh, Dr. Gentili, and Dr. Tsang at Toronto Western Hospital, he chose Gamma Knife radiosurgery in June 2018. Despite some pain and pin-site bleeding, he was back on the golf course the next morning. With continued hearing loss and buzzing, he remains grateful to his medical team and ANAC for their care and support.
Marilyn's Acoustic Neuroma Journal: Options and Treatment
Her dream of becoming fluent in ASL was interrupted by dizziness, nausea, and fear. What began as a balance disorder diagnosis soon revealed itself to be something far more life-changing: an acoustic neuroma. With the support of ANAC, her husband, and relentless research, she faced difficult decisions and ultimately found resilience, healing, and hope.
Climbing Mountains, Embracing Technology: Living with Acoustic Neuroma
After acoustic neuroma surgery left him with single-sided deafness and balance issues, he’s faced challenges from stumbling into walls to nearly toppling off a ladder—but he hasn’t let it hold him back. With determination, he trained to hike Norway’s Pulpit’s Rock and conquered the 8-hour climb. Alongside these adventures, he shares how the Bonebridge implant has improved his hearing and energy, offering an honest look at both the pros and cons of life after surgery.
