14 May 2010, a spinning room upon waking – my first vertigo attack and the onset of my first migraine, prompted a CT scan. I remember lying in the ER room listening to the doctors outside discussing the scans of a rare brain tumor; little did I know they were talking about me.
“You have a benign brain tumor – a colloid cyst” were the ER doctor’s words to me. These words changed the course of my life forever. I joined the group of ‘watch and wait’ patients around the world with yearly MRI scans to monitor my tumor. I was well looked after from a medical perspective with MRI’s, a neurosurgeon and neurologist and medications for migraine management but had to learn to become my body’s own advocate through conflicting medical opinions.
I continued to suffer from vertigo-like symptoms, on occasion, after my diagnosis and according to my ENT, suffered from a ‘vestibular deficit’, which was treated with medication as needed.
In August 2012, my tumor doubled in size. I suffered from vertigo and an unrelenting ten-day migraine. I had developed obstructive hydrocephalus – my brain was swelling. The only option was brain surgery to remove the tumor and allow life to continue.
Upon waking on August 31, 2012 after my surgery, I knew I had made it through and this was now the next step for me – recovery. The recovery was not what I thought it would be; it was longer and harder. My main challenges after the surgery were chronic fatigue and short-term memory issues.
I continued to struggle with vertigo-like symptoms after my surgery as well as battled with balance when going to the bathroom in the dark at night in the months after my surgery. I had balance tests done at the local hospital, which revealed a vestibular deficit but was told to just ‘live life as normal’ with no other guidance.
I decided to see a vestibular physiotherapist to assess and help me with the balance issues I was facing. This was the best decision I could have made. Her assessment of the challenges I was facing did show that my vestibular deficit was indeed real and I could benefit from vestibular exercises. The exercises were based on movements that make me dizzy and are done in order to train my brain to ‘overlook the error messages’ as a result of my balance deficit and carry on regardless. Over the next few months, these exercises helped me tremendously with my vertigo as well as moving around at night.
Unfortunately, eighteen months after my surgery, I started to suffer from more significant balance issues with 24/7 fatigue and impaired balance. For me, visiting shopping malls were a nightmare, I felt drunk most of the day, talking on the phone was a challenge and noise was always too loud. I could not manage being at my son’s hockey games, I had to go back to napping every day and life seemed to be slipping backwards. My vestibular system seemed like it was on overdrive. I felt like I was on a boat all day long.
The first diagnosis was Superior Canal Dehiscence syndrome and surgery was recommended. Another craniotomy only eighteen months after brain surgery was not something I wanted to hear. So we sought a second opinion. I was diagnosed with vestibular migraines. Working with a strict migraine diet and identifying my trigger foods, being put on prophylactic daily medication and ensuring my life was balanced from a sleep and stress perspective, my life and balance slowly started to return to ‘normal’. For this, I am truly grateful! I never realized, the havoc my vestibular system has been having on my daily life until the ‘wild ocean’ I was on started to calm down and return to a calm sea.
To this day, three years post-surgery, I am so respectful of my body and brain. I know where my limits are; I ensure that I take my medications, avoid trigger foods but at the same time live life to the fullest and embrace it and try new things! This journey has taught me so much about “breathing in the small things” and at the same time “being your own advocate”. On that note, I even wrote a book about it to help others who have been through a similar experience to know they too can move forward with small steps: Two Steps Forward – Embracing life with a brain tumor. http://www.twosteps.ca.