This article originally appeared in the Fall 2023 issue of On The Level.
The personal story behind new research into vestibular support groups.
By Erik B. Vanstrum, MD
My Vestibular History
Well into my 3rd year in medical school I was hospitalized with Ramsay Hunt syndrome, which is a viral infection of the facial nerve, and in my case the vestibular nerve as well.
The first few days out of the hospital, I could not walk to the bathroom without help. I could not read without my eyes jumping across the letters and words.
Finishing a rigorous medical rotation was out of the question.
The Challenge Of Sharing
One of my main challenges as a patient was describing to others how I felt, how difficult it had become to interact with the world. Shouldn’t I, with three years of medical jargon crammed into my brain, be able to communicate my symptoms to others?
I learned firsthand this was a primary challenge for individuals with vestibulopathy. Those who understand best are those who have experienced similar experiences. As I struggled to perform activities of daily living, I began to consider how important it is to share these experiences with others who can best understand, others with vestibular disorders.
Why Research Peer Support?
As a diligent medical student, I researched the academic and scientific literature on this subject and found that little to nothing had been studied or published on the value of peer support.
Online Support Communities
I pursued clinical research on this topic and soon published an article in The Laryngoscope, an otolaryngology medical journal, titled: An Exploration of Online Support Community (OSC) Participation Among Patients With Vestibular Disorders.
In this research, my team and I learned that OSCs are used by many different types of patients with vestibular disorders and are a significant source of peer support.
We learned that OSC users engage frequently with these groups, sometimes as much as daily, and have multi-year long memberships. OSC users felt that their participation allowed more effective communication with medical professionals and positively impacted their medical care.
In future work, I hope to investigate and compare differences between in person and online support groups.
Changing Medical Paths
With time, my brain learned to process the new vestibular inputs after my infection, a form of neural plasticity termed vestibular compensation. I returned to medical rotations with a new focus on my specialty of choice: Otolaryngology (aka Ear, Nose, and Throat (ENT)). Ultimately, my personal statement into residency began as follows:
“I tried to step forward but collapsed, unable to orient, the world spinning around me. Well into my MS-3 year, I was set on pursuing urology when a hospitalization with Ramsay Hunt syndrome derailed by career plans. Over the subsequent months I redirected my energy towards otolaryngology. Many aspects of urology I appreciated are also present in ENT – a field that balances both medicine and surgery with passionate individuals and exciting research. Distinct differences emerged though, especially those highlighted by my experience as a patient recovering from vestibular dysfunction.
“With a background in neuroscience, I find the anatomy more engaging. Relearning basic abilities I had previously taken for granted, like walking without falling, has shown me firsthand how head and neck pathology intertwines with the challenges, hopes, and fears that ENT patients can face.
“My experience as a patient has inspired me to pursue otolaryngology, and I hope in the future to empathize with my patients about their own similar challenges.”
You can read Erik’s published article at https://pubmed.ncbi.nlm.nih.gov/34889460/.