Just published by a neuroscientist about her experience with an AVM. Dr. Taylor was listed at one of Time Magazine’s 100 most influential people in the world and has been featured on Oprah.com.
Excerpt from the book (via http://www.dailymail.co.uk/health/article-1037125/I-knew-brain-imploding–Ive-excited.html):
As a brain scientist, Dr JILL BOLTE TAYLOR had dedicated her life to understanding the human mind. So, when she suffered a stroke aged 37, she was in the rare position of being able to observe - and understand - what could be occurring to her brain at the time. Here, Jill gives an incredible insight into what happens when you have a stroke…
On December 10, 1996, I awoke to the familiar tick tick of my CD player as it began winding up to play. Sleepily, I hit the snooze button. It was 7am.
Six minutes later, I sluggishly awoke to a sharp pain piercing my brain directly behind my left eye.
As I bumbled to the bathroom, I felt peculiar, as though I was observing myself in slow motion. My movements were no longer fluid; they were deliberate and jerky.
Then, as I turned on the tap, I realised my hearing wasn’t right. I was also having problems with my balance and co-ordination.
Jill Bolte Taylor, as a brain scientist, found the experience of a stroke exciting, despite its potentially fatal consequences
Jill Bolte Taylor, as a brain scientist, found the experience of a stroke exciting, despite the potentially fatal consequences
Only at that point did I, a neuroanatomist who had spent nearly 20 years studying and researching the brain, realise something was afoot.
Co-ordination, balance and breathing are processed through the part of the brainstem called the pons and, for the first time, I realised I was having a neurological malfunction - a life-threatening one.
What was going on? I wondered. Have I experienced anything similar before? This feels like a migraine.
A tingling sensation surged through my chest and forcefully radiated into my throat. I became aware I was in danger.
As I stepped out of the shower, my right arm dropped completely paralysed against my side. In that moment I knew.
‘Oh my gosh, I’m having a stroke!’
Self-diagnosis
Bizarrely, I was rather elated when I realised what was happening in my brain. I kept thinking: ‘How many scientists get to study their own brain function and mental deterioration from the inside out?’
When my arm became paralysed it felt as if something inside it had exploded. When it dropped dead against my body, it clubbed my torso. I felt as if my arm had been guillotined off.
A false-colour arteriograph of the head revealing an aneursym caused by the dilation of a thinned arterial wall in the carotid artery
A false-colour arteriograph of the head revealing an aneursym caused by the dilation of a thinned arterial wall in the carotid artery
But while most would panic, I understood that my motor cortex - which controls the ability to move - had been affected. A few minutes later, the limb began to throb. I wondered if I would ever be normal.
I caught sight of my bed and thought: ‘I just want to rest.’ But resounding like thunder from deep within me, a commanding voice retorted: ‘If you lie down now, you will never get up!’
I didn’t know what type of stroke I was experiencing, but later I was to discover it was the congenital disorder arteriovenous malformation, or AVM, which was spilling blood over the left hemisphere of my brain.
Normally, the heart pumps blood through the arteries with high pressure, while blood is retrieved through the veins, which are low pressure. A capillary bed acts as a buffering system between the two.
But with AVM, an artery is connected to a vein with no buffering capillary bed in between. Over time, the vein can no longer handle the pressure and the connection between the artery and vein breaks, spilling blood into the brain. Although AVM accounts for only 2 per cent of haemorrhagic strokes, it is the most common form that strikes people during their prime.
Calling for help
I knew I had to get to hospital. But I felt disjoined from the linguistic and numerical skills controlled by the left side of the brain. That’s why I didn’t call the emergency services. The haemorrhage was positioned over the portion of my brain which understood what a number was.
However, in a moment of clarity, I knew one of my work colleagues would get help - if only I could remember the number. Eventually the first half, then the second half of the number appeared in my mind and I jotted it down. I was copying an image of the number in my mind, rather than actually remembering it. The process took 45 minutes.
I dialled the number by matching my squiggles on the paper to the squiggles on the phone pad. To my great fortune, my good friend, Dr Stephen Vincent, was at his desk.
I blurted out: ‘This is Jill, I need help.’ It sounded more akin to grunts and groans, but Steve recognised my voice and realised I was in trouble.
I couldn’t understand what he was saying, but I could glean he would come to my aid.
When Steve appeared in the doorway (less than an hour later), no words were exchanged. He escorted me gently to his car and drove to the hospital.
I was taken to have a CT scan of my brain and was conscious enough to find some satisfaction in learning my self-diagnosis had been correct. I was having a rare form of stroke.
Steve called my mother to tell her what had happened.
That afternoon, the doctors came to visit. I was introduced to a neurosurgeon called Dr Ogilvy. He suggested my brain was opened up to remove the remnants of the AVM and a clot the size of a golf ball. He said if the AVM was not removed, it was likely I’d haemorrhage again.
A coloured magnetic resonance imaging (MRI) scan of the brain from the side
A coloured magnetic resonance imaging (MRI) scan of the brain from the side
When I realised they planned to cut open my head, I was aghast. Any self-respecting brain scientist would never allow anyone to do this - we know how delicate the brain is. I shook my head to make this clear. However, my mother persuaded me to have the surgery because it was my only chance.
Five days later I returned home, where I had less than two weeks to prepare for the operation. My mother was my carer. I would sleep for six hours, then wake for 20 minutes before sleeping again.
Rehabilitation
Mother learned not to ask me ‘Yes/No’ questions - these didn’t challenge my brain enough - so she used multiple choice.
She’d say: ‘For lunch, you can have minestrone soup’, and I would search my brain to figure out what minestrone soup was. Once I understood that, she would proceed with another choice: ‘Or you can have tuna salad.’
On December 27, I returned to hospital. I awoke from surgery to discover the left side of my head had been shaved and a nine-inch scar was covered with a gauze.
The moment my mother arrived, she blurted: ‘Say something.’ Since the clot they’d removed abutted the part of my brain responsible for language, her greatest fear was that I’d lose my ability to speak.
I spoke and we both cried. The surgery had been a success. I think of the brain as a playground filled with children. If you remove the sandpit, these children will start doing whatever else is available to be done.
This is true for neurons in the brain. If you wipe out a neuron’s genetically programmed function, those cells will die from lack of stimulation or they’ll find something new to do.
For example, if you put a patch over one eye, those cells in the visual cortex will reach out to other cells to see if they can help towards a new function - say hearing or speaking.
It was vital that I re-stimulated broken connections in my brain before they died or forgot their purpose.
I focused my rehabilitation on an art project - I created an anatomically correct stained-glass brain. It took eight months, but it was beautiful.
My recovery was steady after that. After three years, I could play solitaire again.
After four years of walking three miles a day, several times a week, I could walk smoothly.
During the fourth year, I could multi-task again.
By the seventh year, my need for sleep had cut back from 11 hours to nine-and-a-half.
I now live the perfect life. I still work for the Harvard Brain Bank, I love skiing, walking and play the guitar. But, once in a while, I can’t help but ponder the irony of my experience - a brain scientist having a stroke.