In early 2017, I had never heard of an acoustic neuroma, nor considered that one day I would be having brain surgery. By the end of 2017, I was living a totally different life! This is the story of how a tumour, which almost stole my life, instead ended up illuminating my path to success.
In January 2017, while watching TV, I suddenly realized, I think I’m losing the hearing in my left ear. With that ear on a pillow, I was able to hear well; however, with my right ear on the pillow, I was unable to hear any sound on the TV. Concerned, I spoke to the only person I knew who wore hearing aids. She told me about a nearby clinic where I could have my hearing tested . . . I was only 25-years-old!
A few weeks later, I started having tinnitus in the left ear, so I scheduled a hearing assessment at the clinic. It was almost two months since I first noticed my hearing loss, and three weeks since the unilateral tinnitus first began. Upon filling out the case history form, I came across a question about vertigo, something I had developed about five years prior, but never looked into as it was so mild. Seeing it on a form for a hearing test, I found both intriguing and disconcerting.
The results revealed normal hearing in my right ear, with a mild loss in the high frequencies, and a mild hearing loss in the left ear, with a severe loss in the high frequencies. I was then referred to an ENT, who retested my hearing. As there was further decline, the ENT ordered an MRI. During the MRI, they pulled me out and said they had to inject me with dye so they could see more information in my brain. This is when I knew something was really wrong.
Three days after my MRI, I learned that I had a very large acoustic neuroma and required brain surgery. The ENT referred me to Dr. Izukawa, a neurosurgeon in Mississauga, and to Dr. Joseph Chen, ENT surgeon. I had my first appointment with Dr. Izukawa in August 2017. He showed me and my parents the MRI images revealing my 4.5 cm tumour, which was crushing my brain, bending my brainstem, and pressing on my optic nerves. He told us that although this tumour is benign in nature, its sheer size was threatening to snap my brainstem. To put into perspective just how large this tumour was, it was about a quarter of the size of my brain.
I met Dr. Chen for the first time ten days before the surgery, in October 2017. Having lived with the knowledge of my tumour for a few months, I had had a chance to tell my family and friends about it. Naturally, they wanted to discuss it extensively and the word “tumour” became a source of panic in itself. As a result, I decided to give it the least threatening name I could think of, Winnifred!
Dr. Chen informed my mother and I that he would be severing my 8th nerve on the left side, and I would become permanently 100% deaf in that ear. Due to the size of my tumour, there was also an extremely high chance that he would have to sacrifice my 7th nerve, which would result in the left half of my face being paralyzed. As a now 26-year-old woman, I was devastated, terrified, and lost. Although I was surrounded by love, I felt alone and isolated. I had had reconstructive knee surgery a year prior and comforted myself by thinking, “at least it’s not brain surgery!”. And then it was.
The morning of the surgery, I woke up feeling an almost unsettling sense of calm, likely because, for about three months, I was afraid to sleep because I did not know if I would wake up or not. My dad picked me and my boyfriend up at 6 a.m. to drive us to the hospital where we met my mom and grandmother. Walking to the operating table was surreal. As I climbed onto it, I couldn’t help but think, “this is brain surgery . . . I might not leave this table alive.” My wonderful little support team patiently waited 12 hours while I had the tumour removed.
Although I was dizzy, no longer had hearing in my left ear, the left side of my face was paralyzed and my vision was impacted, I was grateful for the surgeons and the nurses who took care of me.
About six months post-op, I was fitted with a CROS system, and my life changed again. I fell so deeply in love with my hearing aids that, within a few weeks of wearing them, I registered for college to become a Hearing Instrument Specialist. I knew that I had to help other people. Just ten months after surgery, I was sitting in a classroom. Still experiencing dizziness, and having to undergo surgery to correct vision complications, I had the feeling that I may have rushed myself. Nevertheless, I knew I had made the right decision because helping people has always been a passion of mine, but I had not been able to decide on a career . . . until now.
I graduated in April 2020, completed my internship and passed the International Licensing Exam in 2021. I am now a certified Hearing Instrument Specialist, on top of being an acoustic neuroma survivor. My next goal is to support other young individuals diagnosed with this tumour and ensure that they never feel they have to face this diagnosis alone.
My acoustic neuroma threatened my life but, with the help of my family, friends, and phenomenal surgeons, I overcame it and have now been tumour-free for four years! It is extremely easy to feel alone when you have an acoustic neuroma, so it is fantastic that there is an entire community for support within ANAC!