Striking the Right Balance – The Vestibular Patient Journey: An Interview with a Patient Diagnosed with Concussion
During a recent vestibular conference that the authors attended, there was a panel presentation where a few vestibular patients shared their stories about their patient journey through the medical system to get their vestibular (or non-vestibular) diagnosis and treatment. We hope to recreate that in a written format here with a question-and-answer interview with a vestibular patient. This is the third patient story interview in a series that we will host over time, and this specific patient story focuses on a patient diagnosed with concussion.
Anyone working with the vestibular population knows that the dizzy patient often comes to an appointment seeking answers and may be anxious. These patients often get bounced around the medical system a fair bit before being referred to our clinics and can access proper treatment. In this patient’s case, the vestibular assessment was instrumental and invaluable in guiding the patient’s journey to recovery.
For our interview, the authors are represented by [EZ/MV] and the vestibular patient is represented by [VP] below.
[EZ/MV]: Thank you for agreeing to answer these questions for us! How long from initial onset of symptoms until you received a vestibular diagnosis?
[VP]: I fell in August 2020 which was during the COVID-19 pandemic so I was not able to see any medical professionals. Although I didn’t knock myself out, I couldn’t remember anything of significance, so I was taken by ambulance to hospital. I still have no recollection of what happened between six pm and the following afternoon.
In April and May 2020, I attended a concussion clinic and was given some exercises which did make a difference, although my walking never really improved.
I saw [the physician] in September 2022 and, after her examination, I felt worse. They took my head in her hands and “flung me backwards and forwards” several times. When I left their office, I felt dreadful and had to concentrate to walk. In the following days, I could hardly walk without “staggering”. I couldn’t get myself from a sitting position to a standing position without hanging on to something or by getting help. My husband was shocked at how bad I was getting. However, they referred to me my audiologist and that changed everything.
[EZ/MV]: How would you describe your quality of life during that time period between onset of symptoms and diagnosis?
[VP]: I saw my audiologist in November 2022, so I struggled for quite some time before receiving any worthwhile help with my symptoms.
Before I fell, I was very active. I exercised at least five times a week either with my exercise DVD or by walking 5 km around the track. I was full of energy and felt strong in my body. After the concussion, my life stopped. Initially, I was very nauseous and dizzy and couldn’t stay awake for any length of time. I was unable to watch television, go on the computer or my phone or even read a book. I am an avid reader so that was very upsetting. I felt completely incapacitated. I walked around every day feeling like I had been drinking. That lighted headed feeling stayed with me until the summer of 2022.
[EZ/MV]: How did your audiologist help you with your dizziness or vertigo? Has your quality of life changed since?
[VP]: After their initial examination, my audiologist was able to explain to me, in language that I understood, what was going on in my head. They showed me simple exercises which put me on the path to recovery. I “staggered” into their office but I walked slowly out without staggering. I couldn’t believe the difference in just two hours. My audiologists helped me both physically and emotionally. I really felt like I had turned a corner as I left their office.
I am a very disciplined person, so I did the exercises daily and slowly but surely noticed how much better I was doing.
[EZ/MV]: If there is one thing you could tell your audiologist after you received your vestibular diagnosis, what would it be?
[VP]: I thanked my audiologist for giving me back my life and I mean that sincerely. I am a very upbeat, positive person but I was struggling with my inability to enjoy life. I rarely saw friends because I struggled with my walking and felt weak and vulnerable.
[EZ/MV]: If there is one thing you could share with any and all health professionals about dealing with patients who report dizziness, what would it be?
[VP]: Before my accident, I never paid much attention to concussion and its effects on people. I had never heard of audiologists and their work. I am amazed that the work you do is not better known. My audiologist really pinpointed my problems and helped me tremendously.
In February last year, I bumped into a friend as I was trying to walk around the track (with my walking poles). I met this same friend last week for dinner and she commented on how much better I looked. She told me that she’d never thought of me as “old” but last year, she noticed quite a difference in me. I’m pleased to report that she says my “light” has come back on!!
We are hopeful that this interview about a vestibular patient’s journey will emphasize the importance that audiologists play in the lives of dizzy patients. Our hope is to have additional patient stories over time that will focus on additional vestibular diagnoses and the journey of other patients. Thank you for taking the time to read this article, and an exceptional thank you to the vestibular patient who was interviewed for this article – as clinicians, we are able to learn more through our patients.