Surviving PET, SCDS, and Vestibular Migraines When 8 Doctors Refused to Help | Ep.4

Surviving PET, SCDS, and Vestibular Migraines When 8 Doctors Refused to Help | Ep.4

Show Notes: Imagine being told by eight doctors that you'll just have to live with debilitating ear conditions that robbed you of everything you loved doing. After one medical procedure triggered severe patulous eustachian tube and superior canal dehiscence syndrome, former national team sailor Stephanie couldn't work, exercise, or stand without assistance. Constant autophony, vestibular migraines, and balance issues left her desperate until she found Dr. Dean in Texas, who offered innovative surgical solutions. In this episode, Stephanie shares her journey through groundbreaking treatments, including ossicle chain separation, that enabled her to return to work and reclaim functional daily life despite ongoing challenges. In this episode, Simone and Stephanie will discuss: (00:00) Introduction to the Sound of Silence Podcast (01:56) Introducing Stephanie: Her Early Struggles and Diagnosis (03:12) Living With Patulous Eustachian Tube (11:02) Finding the Right Doctor: Dr. Dean's Approach (17:02) Her Medical History and Surgeries (20:30) Stephanie’s Daily Life and Adjustments (26:21) Mindfulness and Mental Health in Managing Ear Conditions (31:57) The Importance of Understanding Ear Anatomy (32:53) Upcoming Foundation Launch and Final Thoughts Guest Bio: Stephanie is a patulous eustachian tube and superior canal dehiscence syndrome advocate from St. Augustine, Florida. Originally from Montreal, Quebec, she spent five years as a national team sailor for Canada in her twenties before relocating to the United States. After developing multiple rare ear conditions following a balloon dilation procedure in 2017, Stephanie has undergone seven surgeries with specialist Dr. Dean in Texas, including innovative ossicle chain separation surgery. She is a member of the upcoming Collinson Foundation for Patulous Eustachian Tube, launching in early 2026 to provide global education and resources for those living with this debilitating condition.    Stephanie’s Resources: The Collinson Foundation LinkedIn: https://www.linkedin.com/in/collinson-foundation-for-patulous-eustachian-tube-429b9a367?utm_source=share_via&utm_content=profile&utm_medium=member_ios [https://www.linkedin.com/in/collinson-foundation-for-patulous-eustachian-tube-429b9a367?utm_source=share_via&utm_content=profile&utm_medium=member_ios]    The US Facebook Support Group for Patulous Eustachian Tube Dysfunction where Stephie is one of the Admins: https://www.facebook.com/share/g/1C35Q3pyz3/?mibextid=wwXIfr [https://www.facebook.com/share/g/1C35Q3pyz3/?mibextid=wwXIfr]    Stephie‘s ENT doctor who cares about people suffering from our condition: https://earandsinusinstitute.com/ [https://earandsinusinstitute.com/]    My Resources: My WhatsApp: +49 170 703 49 84  My Instagram: @simone.kriener and @earpodcast My LinkedIn: linkedin.com/in/simone-kriener-0622b8281/ [https://www.linkedin.com/in/simone-kriener-0622b8281/]  My Facebook: Simone Kriener  My Website: www.starseed-transformation.com [https://www.starseed-transformation.com/] and www.tomatis-bergischesland.com [https://www.tomatis-bergischesland.com/]

Overcoming Patulous Eustachian Tube: Multiple Surgeries, Mental Health, and Finding Relief | Episode 3

Emily is the very first guest on this podcast, and her story brings a powerful voice to the realities of living with Patulous Eustachian Tube (PET). She faced debilitating symptoms beginning in 2016, enduring constant autophony that turned every word into a megaphone and every heartbeat into overwhelming noise. After losing 85 pounds, her condition intensified and led her through years of failed procedures, traumatic surgeries, hearing loss, and a mental health crisis that forced her to leave her career. In this episode, Emily shares her experience navigating multiple PET treatments, the creation of the Collinson Foundation, and the profound relief she finally found after years of searching for answers.   In this episode, Simone and Emily will discuss: (00:00) Introduction (02:19) Meet Emily: A Fellow Sufferer (02:54) Emily's Journey with Patulous Eustachian Tube (05:13) Medical Procedures and Challenges (06:07) The Impact of Weight Loss on Symptoms (07:39) Exploring Treatment Options (09:15) The Emotional and Mental Toll (21:46) Creating Awareness and Support (34:12) Closing Thoughts and Hope   Guest Bio: Emily is a Patulous Eustachian Tube advocate, author, and founding board member of the Collinson Foundation for Patulous Eustachian Tube (PET). After an eight-year journey through multiple procedures and surgeries to treat her debilitating rare ear disorder, she has dedicated herself to raising awareness and providing resources for PET patients worldwide.    Emily’s Resources: Emily’s Books on Amazon: https://a.co/d/f8KI8yz [https://a.co/d/f8KI8yz]   The Link for my book on Facebook Marketplace: facebook.com/marketplace/item/2002972693873762/ [https://www.facebook.com/marketplace/item/2002972693873762/]   LinkedIn Page for the Foundation (Under Construction): www.linkedin.com/in/collinson-foundation-for-patulous-eustachian-tube-429b9a367 [http://www.linkedin.com/in/collinson-foundation-for-patulous-eustachian-tube-429b9a367]     About the Author, Emily Rodvold Emily Rodvold is a patient advocate and writer who has lived with Patulous Eustachian Tube (PET) since 2016. Her journey began with a baffling set of symptoms that turned her life upside down—autophony, aural fullness, and the constant echo of her own voice. What followed was a years-long battle across states, surgeries, and specialists in search of relief from a condition so rare it often felt like chasing Bigfoot. In addition to living with PET, Mrs. Rodvold also manages multiple chronic illnesses, including Rheumatoid Arthritis, hypothyroidism, and the long-term effects of bariatric surgery. Her experience navigating complex medical systems, misdiagnoses, and the mental health impact of chronic illness led to her hospitalization for Major Depressive Disorder, Severe Anxiety, and PTSD. She credits her recovery to intensive therapy, family support, and her own unrelenting determination to be heard and to help others who live between echoes and silence. This book, Strength for the Thunder Inside, was born out of necessity—a guide she wished she had when her symptoms began. It blends medical research, personal storytelling, and hard-won wisdom to offer comfort, clarity, and community to those who feel isolated by their diagnosis. Mrs. Rodvold’s hope is that by sharing her story, others will feel seen, validated, and empowered to keep going, even when the path feels uncertain. She lives in Idaho with her husband, where she works remotely and continues to advocate for better awareness, research, and compassion for those living with invisible illnesses.    My Resources: My WhatsApp: +49 170 703 49 84  My Instagram: @simone.kriener and @earpodcast My LinkedIn: linkedin.com/in/simone-kriener-0622b8281/ [https://www.linkedin.com/in/simone-kriener-0622b8281/]  My Facebook: Simone Kriener  My Website: www.starseed-transformation.com [https://www.starseed-transformation.com/] and www.tomatis-bergischesland.com [https://www.tomatis-bergischesland.com/]

Healing Rare Ear Disorders Through Mindful Routines and Holistic Living | Episode 2

Show Notes: Hi, I’m Simone Kriener and welcome to my second episode of The Sound of Silence: Living with Special Ears. Living with rare ear disorders pushed me into a cycle of stress, fatigue, and worsening symptoms, until I rebuilt my life through mindful routines, holistic healing, and nourishing nutritional practices. After facing the emotional and physical stakes of Patulous Eustachian Tube, I have transformed my struggle into a journey of wellness, purpose, and teaching. In this episode, I share practical tools to manage ear-related conditions, regulate the nervous system, and create healing through daily habits.   In this episode, I will discuss: (00:00) Introduction (02:35) Daily Routine and Morning Rituals (04:18) Managing Stress and Nervous System Health (08:46) The Importance of Nutrition (12:22) Superfood Shakes and Their Benefits (16:49) Homemade Remedies for Eustachian Tubes (20:36) The Role of Yoga and Mental Health (23:09) Finding Your Path and Making Changes (26:38) Conclusion and Upcoming Episode   Bio I am a yoga teacher, spiritual guide, and wellness entrepreneur dedicated to supporting individuals living with rare ear disorders. As the creator and host of The Sound of Silence: Living with Special Ears, I use my experience with mindfulness and holistic healing to educate and empower listeners. I also own a vegan organic superfood store and weave wellness into everything I do. My mission is to create a supportive, heart-centered community for anyone seeking understanding, hope, and guidance on their ear health journey.   Resources: My WhatsApp: +49 170 703 49 84  My Instagram: @simone.kriener and @earpodcast My LinkedIn: linkedin.com/in/simone-kriener-0622b8281/ [https://www.linkedin.com/in/simone-kriener-0622b8281/]  My Facebook: Simone Kriener  My Website: www.starseed-transformation.com [https://www.starseed-transformation.com/] and www.tomatis-bergischesland.com [https://www.tomatis-bergischesland.com/]

My Journey with a Rare Ear Disorder No One Could Explain | Episode 1

My Journey with a Rare Ear Disorder No One Could Explain | Episode 1   Show Notes: Hi, I’m Simone Kriener and welcome to my very first episode of The Sound of Silence: Living with Special Ears. My life changed the day terrifying symptoms of Patulous Eustachian Tube (a rare ear disorder) began and doctors insisted nothing was wrong. As my condition worsened, I felt panic, confusion, and deep loneliness while moving through misdiagnosis and long stays in psychological and psychiatric hospitals. Everything shifted when one doctor finally believed me. With a real diagnosis, I began managing my condition holistically and created this space to support and empower others with rare ear disorders. In this episode, I share my journey and offer awareness, validation, and gentle tools for anyone seeking hope and healing.   In this episode, I will discuss: (00:00) Introduction to the Sound of Silence (02:11) My Journey With Rare Ear Disorder Begins (02:38) The Onset of Symptoms (04:52) Medical Insights and Struggles (09:58) The Psychological Impact (12:15) Finding Validation and Relief (14:32) Living With Patulous Eustachian Tube (18:59) Building a Supportive Community   Bio I am a yoga teacher, spiritual guide, and wellness entrepreneur dedicated to supporting individuals living with rare ear disorders. As the creator and host of The Sound of Silence: Living with Special Ears, I use my experience with mindfulness and holistic healing to educate and empower listeners. I also own a vegan organic superfood store and weave wellness into everything I do. My mission is to create a supportive, heart-centered community for anyone seeking understanding, hope, and guidance on their ear health journey.   Resources: My WhatsApp: +49 170 703 49 84  My Instagram: @simone.kriener and @earpodcast My LinkedIn: linkedin.com/in/simone-kriener-0622b8281/ [https://www.linkedin.com/in/simone-kriener-0622b8281/]  My Facebook: Simone Kriener  My Website: www.starseed-transformation.com [https://www.starseed-transformation.com/] and www.tomatis-bergischesland.com [https://www.tomatis-bergischesland.com/]

Why ‘The Sound of Silence’ Exists

Welcome to The Sound of Silence, a podcast for anyone living with rare ear disorders or “special ears.” In this short trailer, I’ll share what this podcast is about, the kinds of stories and expert insights you can expect, and how it’s designed to bring community, support, and hope to anyone who feels misunderstood. Subscribe and join our journey together!