On the Lucky Brain Tumor Podcast, Emily invites people to share their acoustic neuroma stories, from the hunt for a diagnosis to creating a new normal after treatment.
Emily was diagnosed with an acoustic neuroma (or vestibular schwannoma) at 27 - a rare, benign brain tumor. She decided to make that experience worthwhile by paying it forward to other brain tumor warriors by supporting people and advocating for hearing assistance.
In this episode Pooja shares her experience of navigating her acoustic neuroma diagnosis through the NHS in the UK. Pooja had translabyrinthine surgery to treat her 4cm tumor, so she did lose all her hearing in the affected ear. Pooja shares her large and small struggles and how focusing on the small daily wins really helped carry her through the recovery process. She goes into detail on many of the unseen challenges of an acoustic neuroma: fatigue, overstimulation, hearing struggles, and balance challenges. Pooja found that practice and experimentation helped her grow the skills to become comfortable again in difficult environments. She also found community and connecting with others diagnosed with acoustic neuromas made a large positive impact in her life.
#acousticneuroma #vestibularschwannoma #braintumor #acousticneuromawarrior
25 Sept 2026
Episode 11: Earle's Story
In this episode Earle tells his story of being diagnosed with an acoustic neuroma back in 1977. Earle shares his struggles with facial paralysis, headaches, and hearing loss. However, he truly believes he is a better person because of his diagnosis and shares how it altered his viewpoint as well as inspired new creativity in his life. After his surgery Earle became a woodworker, achieving national recognition for his works of art- kaleidoscopes.
#acousticneuroma #vestibularschwannoma #braintumor #acousticneuromawarrior
25 Aug 2026
Episode 10: Katy's Story
In this episode Katy discusses her experience of being diagnosed with a 4 cm acoustic neuroma while attending college. Despite having to fully relearn how to walk, Katy bounced back from her surgery quickly and was back to her regular life in short order. Katy did experience regrowth of her tumor on her facial nerve and did radiation treatment that has been successful at arresting tumor growth. She has since found out she actually has mosaic NF2 (neurofibromatosis type two) which includes other nerve sheath tumors. Katy shares some amazing advice on coping with her diagnosis and how she has used her lived experience and vocation to improve accessibility for others.#acousticneuroma #vestibularschwannoma #braintumor #acousticneuromawarrior #neurofibromatosistype2
30 Jul 2026
Episode 9: Betty's Story
In this episode Betty shares her incredible story when she was diagnosed as a surprise while looking into dental concerns. Betty chose radiation to treat her 2.2 cm acoustic neuroma as she is a professional musician and wanted to retain her hearing if possible. She had wonderful treatment results and kept all of her hearing! Betty navigated balance struggles as well as other symptoms. Throughout her entire journey the Acoustic Neuroma Association remained an incredibly important resource and support.
#acousticneuroma #vestibularschwannoma #braintumor #acousticneuromawarrior
25 Jun 2026
Episode 8: Kim's Story
In this episode Kim shares about her complicated treatment journey for her acoustic neuroma. Kim had a larger tumor and was pretty symptomatic, so her surgery was fairly immediate. She had some unusual complications, including multiple blood clots in her brain that necessitated additional brain surgeries. All of these issues meant a longer and bigger recovery. Then at her five year MRI she found out she had regrowth and proceeded to have radiation. Despite all these challenges, Kim's positive energy really shines through as she shares navigating all of these difficulties to land in a place where she is feeling well and leading a full and busy life.
#acousticneuroma #vestibularschwannoma #braintumor #acousticneuromawarrior
27 May 2026
Episode 7: Sean and Chris
In this episode, I get to meet Sean Wolfe, the artist known as @salvobeta (https://www.youtube.com/@salvobeta), and Chris Eichenseer of @SomeoddpilotRecords (https://www.youtube.com/@SomeoddpilotRecords). These musicians and long-time friends were both diagnosed with a rare brain tumor called an acoustic neuroma that took all their hearing in one ear. Chris and Sean get real with the challenges of this diagnosis and the emotional roller coaster they went on. Contrary to what you may expect, this experience has only strengthened their commitment to the music scene. Sean even mentions the idea of creating music specifically designed for cochlear implant users like himself. Sean and Chris are very open about how this drastic diagnosis changed their worldview, leading them to prioritize what really matters in their lives. #acousticneuroma (https://www.youtube.com/hashtag/acousticneuroma) #vestibularschwannoma (https://www.youtube.com/hashtag/vestibularschwannoma) #braintumor (https://www.youtube.com/hashtag/braintumor) #acousticneuromawarrior (https://www.youtube.com/hashtag/acousticneuromawarrior) #hearingloss (https://www.youtube.com/hashtag/hearingloss)
11 May 2026
Teaser Video- Sean and Chris
I had the amazing opportunity to record my first in-person podcast with these two musicians and longstanding friends who were both diagnosed with acoustic neuromas. Sean Wolfe of @salvobeta and Chris Eichenseer of @someoddpilotrecords shared their stories and how they have navigated their hearing loss alongside their passion for music. This podcast is a must-watch - so here is a little teaser while we await the full episode! #AcousticNeuromaAwarenessWeek #AcousticNeuroma #VestibularSchwannoma #Podcast #LuckyBrainTumorPodcast
21 Apr 2026
Episode 6: DJ's Story
In this episode DJ talks candidly about his retrosigmoid surgery for his acoustic neuroma as well as the physical and mental repercussions. DJ did lose all his hearing in the affected ear and experienced facial paralysis. He has wonderful insight into his emotions and thoughts throughout the process as well as tools that helped him cope. His heartfelt storytelling is both engaging and validating.
#acousticneuroma #vestibularschwannoma #braintumor #acousticneuromawarrior
26 Mar 2026
Episode 5: Maggie's Story
In this episode Maggie tells her story of balance issues that lead to an acoustic neuroma diagnosis. Maggie chose retrosigmoid surgery and experienced a phenomenal immediate recovery. Her life is busy and active these days- canoeing, hiking, and chopping wood. She does still struggle with balance and oscillopsia, but she has utilized several tools to assist her in her day to day. Maggie has also had a very unique journey with her hearing throughout her acoustic neuroma experience. Her warmth and encouragement really shine through in her storytelling.
#acousticneuroma #vestibularschwannoma #braintumor #acousticneuromawarrior
26 Feb 2026
Episode 4: Zoe's Story
In this episode Zoe shares her story of her diagnosis and why she chose radiation for her treatment. As a musician, Zoe brings some unique perspectives to her experience of hearing loss. Her story really shines a light on the importance of choosing a treatment path that fits you and your life. Zoe's radiation experience was extremely successful, and her openness about her mental and emotional struggles through her diagnosis are both validating and encouraging.
You can find Zoe and her music here:https://linktr.ee/zoezobrist
#acousticneuroma #vestibularschwannoma #braintumor #acousticneuromawarrior
20 Jan 2026
Episode 3: Stacy's Story
In this episode of the Lucky Brain Tumor Podcast, Stacy shares her story of how she was experiencing symptoms while pregnant and was diagnosed with an acoustic neuroma brain tumor when her baby was just a couple weeks old. Unusually, her tumor was growing somewhat quickly so she chose to do retrosigmoid surgery during her child's first year of life. From describing the challenge of brain surgery as the mother of two very young children to the hope and support she found in community, Stacy's story reminds us how challenging times can lead to a better version of ourselves.
#acousticneuroma #vestibularschwannoma #braintumor #acousticneuromawarrior
22 Dec 2025
Episode 2: Ramiz's Story
In this episode of the Lucky Brain Tumor Podcast, Ramiz shares his dramatic and harrowing story of receiving an acoustic neuroma diagnosis during the late 80’s in Iraq in the midst of a war. Ramiz had to fight through bureaucratic red tape to even travel out of the country and receive treatment. He then had an extremely challenging and eventful surgery that resulted in total facial paralysis on the tumor side. He discusses his facial nerve graft surgery, which was a new procedure at that time. Through his complicated and fascinating story, Ramiz demonstrates how life can still be full and successful after a difficult diagnosis and treatment.
www.ramizgabrial.com (http://www.ramizgabrial.com/) www.strongerthanthescar.com (http://www.strongerthanthescar.com/)
#acousticneuroma #vestibularschwannoma #braintumor #acousticneuromawarrior
25 Nov 2025
Michelle's Story
In this episode, Michelle shares her story of her acoustic neuroma diagnosis back in 2012 when she was twenty-seven years old. Michelle had amazing results from her middle fossa surgery, and her story is very inspirational. Michelle gives great advice for someone diagnosed with an acoustic neuroma- including the importance of self advocacy, community, and true rest.
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