By Sarah Do Couto
In 2008, I was diagnosed with a neurological condition called Chiari Malformation Type I.
This meant the bottom part of my brain, the cerebellum, was almost an inch longer than the one of the average person. The excess tissue extended downward into the area of my spinal column, creating excess pressure.
The buildup resulted in extreme migraines, limb numbness, blurry vision, dizziness, nausea, and vomiting. These symptoms only became more severe with age. There were years in my life where even laughing was physically painful.
I was 10 years-old when doctors discovered the malformation after an MRI for an unrelated issue. While I was too young to fully comprehend what being assigned to a team of neurosurgeons meant, my mother was shaken. Although none of us could physically see the issue plaguing my body, she knew it would end with her eldest child on the operating table.
What we didn’t know was that it would be twice.
In 2013, my doctors became worried when I began to have difficulty swallowing. I was told that if they didn’t operate, my surgeons were confident I’d soon lose other vital motions, like feeling in my arms in legs. Once it began, if untreated, it could be fatal.
So that same day, I signed what felt like my life away and agreed to go under the knife.
The pain was immense. I spent six days in hospital, terrified and exhausted. Everyone who came to visit said I looked like a corpse. That was in part due to the strong medications I was given, which nurses later learned I was severely allergic to.
I was assured however, the pain (and shaved head) were the tradeoff for a life symptom free. If only that had been true.
After my surgery, I was immediately dismissed by my doctors and labelled as ‘cured,’ despite my insistence that something still felt wrong. It took another year of suffering in silence before one of the surgeons reached out to me with an urgent phone call.
They’d found spinal fluid trapped inside of my spine from the previous surgery. I was told it was very likely this fluid would pool there, creating a blockage and threatening to paralyze me from the neck down.
With a newfound urgency, I once again signed papers for surgery. This time, a young doctor in cowboy boots asked to do an experimental surgery. He explained that unlike previous surgeons, he would actually be removing the part of my brain causing issue. With nothing to lose, I agreed.
The second surgery went as well as possibly could have, this time with the right medications and treatment. After months of recovery, I slowly regained control of my body and life, symptom free.
Later that year, I started school at my dream university, able to laugh again and enjoy life freely.