ICU – “I See You” Podcast
Bilateral Vestibular Hypofunction
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This episode of the ICU Podcast addresses what happens when we lose function in our inner ear completely, specifically when the vestibular system on both the right and left sides is not functioning. 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, and imbalance, and may eventually result in 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?
Guests
Dr. Charles Della Santina, MD, PhD, specializes in surgical treatment for otosclerosis, acoustic neuroma, and other conditions that cause hearing loss or abnormal vestibular sensation. He is a neurophysiologist with a PhD 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 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.
Hosts
Cynthia Ryan, Executive Director of the Vestibular Disorders Association (VeDA)
Kimberly Warner, Founder and Director of Unfixed Media
This podcast is a co-production of the Vestibular Disorders Association (VeDA) and Unfixed Media.
Summary
Living with bilateral vestibular loss can be a life-altering experience, robbing individuals of balance, clear vision, and independence. In a groundbreaking podcast episode, Dr. Charlie della Santina and patient Donna McKinney shed light on this often-misunderstood condition and a promising new treatment that offers hope to millions.
Donna McKinney’s journey began gradually, with subtle signs of vestibular dysfunction. What started as vestibular migraines progressively worsened until one morning, her world quite literally turned upside down. Suddenly unable to maintain balance, experiencing constant dizziness, and struggling with visual perception, McKinney found herself navigating a challenging new reality.
Dr. Della Santina, a neurophysiologist and engineer at Johns Hopkins University, explains that bilateral vestibular loss can stem from various causes. Approximately 40% of cases result from ototoxic medications, particularly aminoglycoside antibiotics used in treatments like knee replacements. Another significant portion remains idiopathic, with no clearly identified cause.
The condition’s impact is profound. Patients experience severe balance issues, blurred vision during head movement, and an increased risk of falls. Traditional medical approaches have been limited, often leaving patients feeling unseen and hopeless. Many physicians, unable to offer effective treatments, would even refuse to see patients with bilateral vestibular loss.
Enter the vestibular implant – a technological marvel that could revolutionize treatment. Drawing on cochlear implant technology, this device utilizes head motion sensors to stimulate the semicircular canals, thereby providing an artificial balance mechanism. Dr. Della Santina’s team has been pioneering this technology, transforming it from a research concept to a potential clinical solution.
McKinney was one of the early participants in the clinical trial. Her experience has been transformative. Initially skeptical and expecting immediate results, she discovered that the implant requires patience and ongoing rehabilitation. However, the improvements have been remarkable. She can now walk on soft sand, navigate crowded stores, and move with significantly increased confidence.
The implant isn’t a complete cure but a powerful tool. McKinney continues working with vision and vestibular therapists, noting that each day brings incremental improvements. Her fight-or-flight response has calmed, and her independence has dramatically increased.
Dr. Della Santina emphasizes that while the implant is promising, the path to widespread availability is complex. Regulatory approvals, insurance coverage, and extensive medical device development processes mean patients must remain patient. However, he remains optimistic that vestibular implants will become as routine as cochlear implants in the future.
The podcast offers valuable advice for individuals with vestibular disorders. Avoid medications that cause drowsiness, be cautious of ototoxic drugs, and work closely with specialized rehabilitation therapists. Support groups and mental health counseling can also be crucial in managing the emotional challenges of the condition.
Both McKinney and Dr. Della Santina stress the importance of hope. Clinical trial participants are medical pioneers, taking calculated risks to advance scientific understanding and treatment options. Their courage opens doors for future patients.
Organizations like the Vestibular Disorders Association (VeDA) play a crucial role in supporting patients and raising awareness. The more people understand vestibular disorders, the more research and support can be mobilized.
This podcast episode is more than a medical discussion – it’s a testament to human resilience, scientific innovation, and the relentless pursuit of improving quality of life. For the millions struggling with vestibular disorders, Dr. Della Santina’s work offers a beacon of hope, promising a future where balance and independence are within reach.
A full transcript is available on YouTube (scroll below the description and click “Show Transcript”).
