Note from Kayleigh: I connected with Chelsea a few years ago from our shared interest in yoga, health, and specifically Musicians’ Health concerns. We more recently connected via social media because of her recent surgery and treatment for a rare brain tumor, and I invited her to share her story. Here is part 1.
I was getting my doctorate in music when what I got diagnosed with a rare brain tumour that would likely make me lose hearing in one ear. An account of my story, how my diagnosis affected me as a musician, and reflections on recovery.
Part 1: The diagnosis/background
(aka: you mean my jaw problem is actually a brain tumour?)
In December 2016 I was finishing my first semester in a doctoral music program, when I started feeling strange sensations throughout my head: tingling and electrical “zaps” through the left side of my face, and a weird fluttering in my ear. I was worried about these symptoms but assumed that they had something to do with playing my instrument, the saxophone. I had just completed a major recital on baritone saxophone, and I figured I had overdone it and was suffering from a musculoskeletal disorder in my jaw or neck. I knew from my research that most of the symptoms I was experiencing could be explained by a problem in the jaw joint or in one of the neck muscles. Over the next half year, my symptoms progressed and fluctuated, and I had a tour of different doctors and manual/physical therapists. Nothing was alleviating my symptoms, and I chased different lines of treatment and theories about my strange collection of sensations. Were these symptoms all connected or coincidental? Eventually I ended up at an ENT (ear nose throat specialist), who discovered that my high-range hearing on the left side was significantly lower than on my right. She said she was being overly cautious, but that she would like to send me for an MRI to rule out this really rare condition, symptomized by asymmetrical hearing loss. Again, I figured it was just wear and tear of being musician. Fast-forward a number of months, and we arrive at my diagnosis, the really rare condition: Acoustic Neuroma. I was in complete shock (you mean my jaw problem is actually a brain tumour?!).
To give some brief info without boring you: An Acoustic Neuroma, more anatomically correctly called a vestibular schwannoma, is a tumour that grows from the cells of the 8th cranial nerve, or the vestibular nerve (there are 12 cranial nerves in total). These tumours are luckily non-cancerous and usually slow growing, but they are in a delicate location that can cause a whole slew of problems, both pre and post treatment. They typically cause problems with balance/dizziness, hearing, and facial movement/function.
The specialists advised me that although I would likely need to have surgery down the road, that we would first “watch and wait”, and there was no rush to take action yet aside from having MRI scans every six months. The waiting period allowed me to gather as much information as I could and to seek multiple opinions. I explored multiple hospitals, surgical approaches, and doctors in order to make the most informed decisions. I continued on with my life, and I decided that no one except my close friends and family needed to know. Unfortunately, the facial symptoms continually worsened. I learned that the electrical sensations I was experiencing were caused by my tumour pressing on the trigeminal nerve (one of the other cranial nerves), and it gradually progressed to the point where eating and talking would send incredibly intense shooting pain through my face. It became clear from the scans that my tumour was growing (as expected), and the surgeons said it was time take action.