I Am A Survivor

When I had my rupture I knew and thought it was rare to have one at such a young age. I was even told that I was apart of the .04% of people who experience a rupture under the age of 26. After joining a few Facebook groups and forums, I then knew it wasn’t all that rare, although I hadn’t yet met a survivor who was a similar age.

It wasn’t until I received an Instagram message from Maddy who connected via an aneurysm awareness hashtag. Maddy is a survivor from a rupture at the age of 23.

She, like myself, has found it difficult to connect and find others who have experienced this traumatic invisible injury. As she put it, ‘it is very rare to meet fellow survivors’ and ‘it is a very isolating experience to live’, which I couldn’t agree with more.

Maddy’s Story (in her own words):

My journey started just before Christmas in 2012. I was on my way to work in Burnaby hauling a heavy bag of gifts over my shoulder. As I was jogging up the stairs to catch the skytrain, I suddenly felt a sharp pain in my neck, and a warm thick liquid feeling go down the right side of my face - like having an egg cracked over my head.

I got on the train, and my instincts told me something unusual was happening, and to keep track of my symptoms. I took out my phone and started writing down what I was experiencing and how I felt. I knew what the symptoms of a stroke were, so I turned my back camera on and looked to see if my mouth and eye were drooping, although they were not. My left arm was also fine, though I knew that the symptoms we are taught to look for are primarily based on studies of men and that women may present very differently.

I arrived at my stop, not feeling ‘bad’, but not feeling ‘right’. My office was not far away, and once I made it there, my colleagues greeted me happily - it was almost the last day of work before the holidays. I said that something was wrong, and they could tell as I wasn't quite myself. Many speculations went around as to what it could be, and I mentioned maybe I was having a stroke. My colleagues noticed my speech was slightly slurred, and a coworker did a visual field test which left me feeling like I was falling into a black hole. A coworker recommended I call the nurses hotline and then head to the ER.

While on the phone with the hotline, I was asked for my care-card. My head went below my heart as I bent over in my chair to reach my purse. I sat up, and my whole world went dark as a violent shock of dizziness and nausea overtook me. My body felt like it was being spun around in a Gravitron ride - centrifugal force spinning me with no way to stop. The phone dropped from my hand and I made fists, clinging tightly to air while groaning - willing the invisible rotations gripping me from the inside-out to stop. I knew I was going to start vomiting, and pushed myself onto the floor and grabbed my garbage bin just in time.

An ambulance was called, and my boss entered the office and stated that I was likely sick with Norovirus or having a brain aneurysm based on my symptoms. I’m uncertain what information was given to the 911 operator and paramedics. Even though I had notes in my phone, and my boss had said ‘aneurysm’, it seemed that no one thought it possible I was actually having a stroke.

I was taken to Royal Columbian Hospital, which is also the top neuro hospital in the lower mainland. Even though I had written down my symptoms, it took the doctors hours to figure out what was going on. They had initially proclaimed a diagnosis of vertigo - unpleasant but not deadly. My fiancé John (who had arrived at RCH) was told everything would be okay, and to go get a coffee. When he came back, I was gone. A Dr found him and said that my CT scan showed I was hemorrhaging near my brainstem and that my situation was now critical.

I experienced a stroke caused by a rupture in my 4th Ventricle, a diamond-shaped area in the Brainstem (which controls your autonomic nervous system, such as heart rate and breathing). It is connected to the rest of the ventricular system, which creates and transports essential, cleansing cerebrospinal fluid around the brain and spinal cord, bathing the central nervous system. Doctors were unable to perform any type of surgery to stop the bleeding - it was a “wait and see” situation if I would survive, be in a vegetative state, or have severe deficits.

I survived.

I have no cognitive memories during this time frame and underwent various tests, MRI and CT scans. A decision was made a few days later to drill into my skull and insert a drain to help relieve the pressure in my brain, to avoid hydrocephalus. I believe the Drs and nurses were doing their very best to help me survive, and I am deeply grateful for their care. There is still so much unknown about the brain, and they did what they knew to help me survive (though I really wish they didn’t shave an inch of my hair from my forehead - resulting in infuriating spiky bangs that took years to grow back).