"In 2015, I was diagnosed with a cavernous malformation (CM) after experiencing the worst headache of my life, accompanied by nausea. I found out it was in the medulla oblongata, the part of the brainstem responsible for essential functions like breathing, heart rate, and motor control. This disease would shape the next decade of my life. From that moment forward, I endured relentless uncertainty and repeated hemorrhages, each one adding to the physical toll on my body. 

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In 2018, 2021, and 2022 I experienced additional bleeding activity within the CM, which further decreased my quality of life due to deficits such as hearing loss, nystagmus, and seizures. 

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Unfortunately, in 2023 I suffered a car accident. I was rear ended and experienced another hemorrhage with a concussion and amnesia. 

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In 2024 I had a hemorrhagic stroke caused by the CM, leaving me with severe deficits and a sense of despair, thinking I would never recover. By 2024, my symptoms included the following:

• face neuropathy

• vertigo

• dizziness

• balance issues

• double vision

• blurred vision

• lack of energy

• stiff neck

• pressure in the back side of neck

• headaches

• burning pain down my neck going into my spine

• brain fog

• hiccups

• brain fatigue

• over exertion makes me nauseous

• hearing loss

• nystagmus

• random choking

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Despite the mounting deficits, every specialist I saw had the same conclusion; my condition was inoperable, and there was nothing they could do for me. The years passed, each marked by oozing of blood within the CM, changing its size and impact, hearing loss, vertigo, seizures, and worsening symptoms. And yet, with every setback, my determination only grew. 

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Instead of receiving immediate care, I was met with more indifference. The emergency room visits brushed off my symptoms. A second hospital simply relied on the first hospital's evaluation rather than conducting their own. The cycle of dismissal continued. 

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Had I listened to them - had I accepted their words - I might not be here today. 

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But I refused to be ignored. 

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Then, in April 2024, I suffered the most devastating hemorrhagic stroke yet - one that left me fearing I would never recover. It was a breaking point, yet also a turning point. Instead of surrendering, I found the courage to advocate for myself more fiercely than ever before. 

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This advocacy would not have been possible without Prem from Cavernous Malformation Canada. Her presence in my journey was more than guidance; she became my unwavering lifeline. Through daily check-ins, shared knowledge, and her compassionate support, she empowered me to navigate a medical system that often dismissed my concerns. 

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Prem introduced me to the concept of care navigation - a resource that proved invaluable in finding the right doctors and asking the right questions. With her help, I connected with Dr. Atif Zafar in Toronto, whose expertise in cavernous malformation changed everything. He understood the seriousness of my condition and urged me to seek a second surgical opinion at the Barrow Neurological Institute in Arizona. 

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It was there that Dr. Lawton confirmed what I had suspected for years; my CM was actively bleeding, and surgery was necessary. He indicated that the surgery risks would be significant, though the danger of not doing surgery would result in further hemorrhages and decline of my quality of life. 

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Through Prem's guidance I connected with Dr. Gary Redekop - a neurosurgeon at Vancouver General Hospital who would finally bring me the answers I had waited nearly a decade for. 

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Meeting Dr. Redekop was a moment of validation unlike any other. For the first time, a doctor listened, believed me, and acknowledged the full scope of my symptoms. He didn't dismiss my concerns; he took the time to explain everything in detail. His clarity and compassion made an immeasurable difference, and when I asked about surgery, he laid out every step with confidence. 

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Then, something incredible happened. 

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Instead of waiting months, my surgery was scheduled immediately. What I had fought so hard for - what had seemed impossible for years - was finally happening. Within days, I was in the operating room, undergoing a complex procedure to remove the CM that had dictated my life and threatened it, for far too long. 

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When I woke up in the ICU, one thought filled my mind: I did it. I made it. 

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Now, seven months post-op, I am reclaiming my life. Recovery has been challenging. I am still adjusting to blurred vision in my left eye, nystagmus, vertigo, and numbness at my incision site. But I refuse to let these challenges define me. I have returned to work part-time, recently started driving locally, and continue to raise awareness for cavernous malformation. 

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Throughout all of this, I remain immensely grateful - for Prem's unwavering support, for the advocacy that saved my life, and for Dr. Redekop, whose expertise made my surgery a reality. 

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I survived. 

Now, I thrive."