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Patient Feature: Nina

Nina shares her cavernoma story for Cavernoma Awareness Month

The symptoms started out of nowhere in August 2020. One day I was playing tennis, and the next I could not get out of bed from so much dizziness. Over the next seven days, these symptoms gradually got worse – intense pressure in my head, blurriness and double vision, difficulty walking straight, etc, until I finally went to the emergency room.
Initially doctors told me I had vertigo, and then diagnosed a possible tumour on the left side of my brain. That’s when I was told they would take me in for an emergency brain surgery as soon as possible.

After doing an MRI however, the doctors found out instead that I had had two haemorrhages in the past week, caused by a vascular malformation found in my left cerebellum, called a Cavernoma. I had never even heard of a Cavernoma! (In truth, it took me several weeks more to even understand what I had had, and even now I’m still learning). It turned out that because it had bled more than once, the only option was still to go ahead with the brain surgery to remove it and absorb some of the bleeding.

Thankfully, the surgery went well! After 10 days in the hospital, I was then transferred to a rehabilitation centre for the next five weeks. Placed in a unit for patients with an “Acquired Brain Injury” (ABI – an acronym I have come to be very familiar with now), I went through both physical and cognitive rehabilitation: anything from learning how to walk again, to training my brain, and learning how to learn, among other fun stuff. My medical team at rehab was absolutely fantastic!

Today I have just celebrated 9 months of recovery, and am still going strong with cognitive and physical therapies every day. I still suffer from cognitive fatigue, difficulty with screens, dizziness, limited range of motion of my neck, among other ongoing symptoms. Recovery has been tough, and although I know I have come a long way, there is still lots to go to achieve my goal of returning to work