Schwannoma Steps

Summer 2023 my life took an unexpected turn when I started feeling unwell. It started with a sudden extremely painful headache and feeling off. Over a couple of months new symptoms developed such as feeling dizzy, off balance, disoriented, facial numbness, hearing loss, pulsatile tinnitus, hyperacusis, and oscillopsia. After many visits and different tests, in September 2023 they found a rare benign brain tumor called Vestibular Schwannoma also called Acoustic Neuroma. This Tumor affects 1 in 100,000 people and typically grows on the acoustic nerve (hearing), vestibular nerve (balance), and facial nerve causing damage. Although the diagnosis was a shock it was good to know the reason so that I have direction on what to do next.

Treatment options are watch and wait, Surgery, or Radiation. I have been on watch and wait however as the tumor is growing will most likely have an active treatment shortly. 

I am extremely lucky to have the support of my husband, kids, family, and friends, and am grateful that my symptoms are improving with time and physio. 

It is a difficult journey however with the help of specialists, vestibular physio, and associations like ANAC (Acoustic Neuroma Association of Canada), we get the resources and support needed throughout the journey as well as insight and education on medical advancements. We will be doing a virtual walk on October 5th, 2024 for a fundraising effort at the Acoustic Neuroma Symposium in Toronto on October 5th 2024.