In this episode we’re going to talk about silence. The silence that happens when you lose your hearing. Whether it comes on all of a sudden or gradually, losing your hearing is a life changer. It starts when you have to ask your friends and family to repeat what they just said. Eventually you stop asking, and you begin to feel separate, apart, not included in the conversation. Although there is no cure for hearing loss, fortunately, there are very effective tools and treatments that can help people remain engaged with the hearing world around them.

Our guests are:

Lynn Johnson: Lynn's life became unbalanced in 2015. She had been feeling off, and out of the blue woke up with imbalance and loud tinnitus (ringing) in her right ear. As days passed, her symptoms continued to get worse. Five months and four doctors later, she was diagnosed with Autoimmune Inner Ear Disease (AIED) and Bilateral Vestibular Hypofunction. Her symptoms include bilateral profound deafness, tinnitus, oscillopsia (jumping vision), and imbalance. Lynn says that if she had been given the correct diagnosis in the beginning, there might have been a chance to save her hearing. Lynn is a VeDA Ambassador and co-leader of a support group for vestibular patients with hearing loss.

Molly Smeal: Dr. Molly Smeal is a clinical audiologist in the Head and Neck Section of the Integrated Surgical Institute at the Cleveland Clinic, and is an adjunct professor for the Northeast Ohio AuD Consortium. Dr. Smeal specializes in diagnostics and auditory implantable devices. She also participates in clinical research related to implantable devices. In her career, she has led and participated in several initiatives focused on clinical quality control. She is a published author and invited national and international presenter. Dr. Smeal is currently a participant of the American Cochlear Implant Alliance.

In this episode of the ICU Podcast we’re going to talk about what happens when we lose function in our inner ear completely, when the vestibular system on both your right and your left sides is not working. Bilateral vestibular loss, also called hypofunction, can be devastating. It results in severe difficulty maintaining balance, especially when walking in the dark or on uneven surfaces, and a decrease in your ability to see clearly when moving your head. This can lead to an increased risk of falling, blurry vision, dizziness, imbalance, and can eventually lead to other types of physical deconditioning. How does a person cope when their internal gyroscope is essentially turned off, and what medical miracles are available to help them?

Our guests today are Dr. Charley Della Santina, one of the foremost researchers in this area, and Donna McKinney, a vestibular patient with bilateral vestibular loss.

Guest Bios
Dr. Charles Della Santina, MD, PhD
Dr. Charley Della Santina specializes in surgery for treatment of otosclerosis, acoustic neuroma, and other problems that cause hearing loss or abnormal vestibular sensation. He is a neurophysiologist with PhDs in biomedical and electrical engineering. Dr. Della Santina founded and directs the Johns Hopkins Vestibular NeuroEngineering Lab. His research group focuses on developing a vestibular implant to treat chronic unsteadiness and oscillopsia caused by gentamicin ototoxicity and other causes of bilateral vestibular hypofunction.

Donna McKinney
Donna McKinney is a mom of three and a proud grandma. Since her diagnosis of bilateral vestibular loss in 2014 she has had to retire from her physically active career as a youth and senior fitness director. She has become a certified health coach and a diabetes prevention coach and is hoping to return to work on a part-time basis.

Donna enjoys cooking, spending time with her family, and going for long rides and day trips with her partner, Alec, who has been by her side through every dizzying step of this diagnosis.

In May of last year Donna received the multichannel vestibular implant as part of a study at Johns Hopkins University.

The year end holidays are probably the busiest time of year for social events. Family gatherings and work parties, special church services, and cocktail parties with friends. These are meant to be fun and festive, a time to eat, drink, and be merry. But events can often be overwhelming for people with vestibular disorders, with bright lights and lots of people talking loudly and all at once. How can you take part in the joy of the season while also taking care of yourself? Today we’re going to talk to a professional event planner whose job is to make large, busy events inclusive, as well as a vestibular patient, who has developed a strategy for being able to enjoy family gatherings.

Mal de Debarquement Syndrome is a central vestibular disorder that typically arises following exposure to passive motion (i.e. boat, airplane, automobile, train, etc.). The characteristic symptom of MdDS is a constant sensation of rocking, swaying, and/or bobbing. On this episode of the ICU - "I See You" podcast, we connect with one of the leading researchers in MdDS and an MdDS patient who runs a support group!

This podcast is a co-production of the Vestibular Disorders Association (VeDA) and Unfixed Media. https://unfixedmedia.com/

About the Guests:
Carol Rexroad Cannon lives with her husband Robert in Hendersonville, North Carolina. They worked together as United Methodist pastors for 35 years before retiring in 2021. Carol was struck with severe vertigo due to vestibular neuritis in 2016, which has since developed into PPPD. Vestibular rehab therapy has helped restore her balance. Carol enjoys hiking mountain trails near her home, visiting with family, and volunteering in the church and community to work for justice, peace, and wholeness.

Erika LaDousa has over 20 years of event planning experience, nine of those as the owner of LDS Events, an event planning company that focuses solely on supporting non-profit organizations. Erika also works as a fundraising consultant with Minneapolis-based Fladeboe Advancement. Erika lives in Edina, Minnesota with her husband and two daughters. She loves to travel, volunteer, and spend time at their family cabin in Wisconsin.

Hosts:
Cynthia Ryan, Executive Director of the Vestibular Disorders Association (VeDA) https://vestibular.org/

Kimberly Warner, Founder and Director of Unfixed Media https://unfixedmedia.com/

VeDA relies on your support to help vestibular patients on their journey to find a life rebalanced. You can make a real difference by making a donation at https://vestibular.org/donate/

If you are experiencing vertigo, tinnitus, dizziness, imbalance, brain fog, or other balance-related symptoms, VeDA may be able to help. To learn more about vestibular conditions and get help finding a diagnosis, treatment, coping tools, and support visit https://vestibular.org/

For help finding a vestibular healthcare provider visit https://vestibular.org/healthcare-directory/

If you are a vestibular healthcare professional and want to reach more patients, join VeDA's Healthcare Provider Directory by becoming a member at https://vestibular.org/article/resources-for-professionals/professional-membership/. Additional benefits include patient education articles you can brand with your logo.

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