From Diagnosis to Surgery - My AN Experience as a Musician
I was finishing my first semester in a PhD music program in Toronto, when I started getting strange sensations: mild tingling and electrical “zaps” through the left side of my face. I was worried about these symptoms but I figured I had overdone it with playing my instrument, the saxophone, and was suffering from a musculoskeletal disorder in my jaw or neck.
Over the next half year, my symptoms progressed and fluctuated, and I saw dentists, doctors, manual therapists, and an ENT who finally discovered that my high-range hearing on the left side was significantly lower than on my right. Again, I thought this was just the wear and tear of being a musician. 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. Fast-forward a number of months, and we arrive at my diagnosis, 2cm Acoustic Neuroma. Looking back, I see some dizziness and balance issues that had been present for a long time but that were subtle enough to fade into the background and that I assumed were just part of my individual quirkiness.
The specialists advised that we would first watch and wait, and there was no rush to take action yet. The waiting period allowed me to gather as much information as I could and to seek multiple opinions. I explored multiple hospitals, approaches, and doctors in order to make the most informed decision. I continued on with my life, most people did not know what I was dealing with, but the facial symptoms continually worsened. I learned that the electrical sensations I was experiencing were caused by my tumour pressing on the trigeminal nerve, and it gradually progressed to the point where eating and talking would send incredibly intense shooting pain through my face. The scans confirmed that my tumour was getting larger (it was about 2.5cm at the time of surgery) and it was time to come out.
Almost 2 years after diagnosis I had translab surgery in Toronto. The team was able to remove basically the whole tumour (a few cells were left behind, which fingers crossed won’t show up on an MRI for many years, if ever) without damaging my facial nerve. The surgeon reported that the facial nerve was extremely thin and if I had waited much longer they wouldn’t have been able to save the nerve.
I am just about one month post-op as I write this, and I feel extremely fortunate that my recovery has been going as smoothly as I could possibly hope for. No, it isn’t always a walk in the park. Yes, it is an adjustment to get used to the loss of hearing and balance on my left side, and I am learning, with the help of others who have gone through this, how to navigate this new normal. I attribute my positive post-op outcome partly to luck, partly to my relatively young age, and partly to being extremely physically and mentally prepared going into the operation. I am also endlessly grateful for the incredible team of experts at the hospital and my amazing support system.
In the 2 years since diagnosis and before surgery, I have (almost) completed my PhD, gotten married to my partner of 10 years, and lived in Spain for 3 months. I have discovered through my health challenges that I want to work in health care and am excited to begin a program in Occupational Therapy next year. My AN journey has taught me how to live with uncertainties, examine what is important in life, and that I am stronger than I thought. I know I am still in the early stages of recovery and am not yet “out of the woods”, but I have decided to share my story in hopes of encouraging and helping others, the same way I was helped by the AN community.