When I first watched the video of her story at the 2019 Canadian Stroke Congress, I almost fell off my red chair. Unlike most stroke patients, Sharon’s symptoms did NOT follow the typical F.A.S.T. model (short for: Facial drooping, Arm weakness, Speech difficulties and Time to call emergency services). . .
Sharon recently wrote this Facebook post:
“Today’s a tough day for me..“I don’t normally share the hard stuff but it’s important. Five years ago today, I suffered a rare stroke in the cerebellum region of my brain..“I’m so happy I’m still here – I know not everyone gets a second chance at life, and I’m lucky. But on days like today, it’s hard not to think of the old me – that girl who seemed to run on high-octane gas and had endless energy..“Some days, she feels like the friend I know, but don’t get to visit. I really miss her. In the early days, I’d hoped for a full recovery but it never arrived, no matter how hard I worked. This new girl arrived instead – she has vision, hearing, bladder, proprioception* and executive function deficits, and she works hard daily to manage her cognitive load – and often fails at it.”.“She has learned a lot of compensatory strategies (she despises that term) to make life work with a permanent brain injury. Her saving grace is an amazing family, a supportive employer, and wonderful friends. This new girl became a patient advocate in a health system that doesn’t serve women well..“In October 2019, I stood in front of 500 healthcare professionals, from neurologists to rehab therapists, at the Canadian Stroke Congress. I shared my personal journey through the healthcare system as a stroke survivor. Up until then, only my family and a few friends knew the struggles I had with care..“For a girl who finds public speaking fun, this talk was the hardest thing I’ve done in my life, I fumbled my words and my voice bled with emotion..“I’m so glad I was brave enough to advocate for my own health. I hope you’ll watch my talk and advocate for yourself if you ever need to.”
You know your body! You know your body better than anybody else does. You KNOW when something is ‘just not right’.
Over a year later, Sharon decided to make her own appointment to meet with the hospital’s Chief of Neurology. She finally learned the full extent of the injury to her brain, and that she also had a genetic blood clotting disorder (Factor V Leiden – FVL -a hereditary mutation of one of the clotting factors in the blood). Although FVL did not cause her stroke, the combination of FVL and oral birth control (OBC) were the cause of her migraines decades earlier. That experience was then used against her in hospital, to dismiss her stroke as a migraine.
“It was those FVL/OBC migraines that were used to misdiagnose me in hospital. If the doctor on the stroke floor had done the required blood work (which a neurologist did 15 months post-stroke), he would have found out I had thrombophilia (FVL).
“Then had he asked more questions instead of jumping to a migraine diagnosis, he would have pieced together a fuller picture to understand my migraines were tied to OBC – something the haematologist did correctly.”
Sadly, she learned that her three daughters carried the same gene mutation, too. Her FVL diagnosis led to her three daughters being diagnosed, and allowed them to eliminate any FVL/OBC stroke risk.
That’s also when the Chief of Neurology apologized to her because they’d “dropped the ball while I was a patient.”
When blood supply to the heart muscle is blocked, that’s a heart attack. Heart muscle begins to die without an oxygenated blood flow to the organ.
When blood supply to the brain is blocked, that’s a brain attack (or stroke). Brain cells begin to die without an oxygenated blood flow to that organ.
A cerebellar stroke like Sharon’s, which affects the back of the brain, is considered a rare cardiovascular condition, typically under 10 per cent of all diagnosed strokes.
Early symptoms of a cerebellar stroke are acute and include loss of balance, coordination problems, dizziness, inability to form or pronounce words, nausea, vomiting, dizziness, double vision, or severe headache (Sharon described her pain “as if someone had blown a hole in the back of my head”).
We should all recognize those symptoms as potential signs of a stroke.
Cerebellar stroke misdiagnosis is estimated by researchers to be as high as 35 percent due to symptom overlap with other conditions: “This is bad news for those suffering cerebellar stroke effects because delays in treatment can raise a patient’s risk of serious damage and long-term impairments.”(1)
One of Sharon’s three daughters is Emma Dreher. I love what Emma recently Tweeted about her mother’s experience:
“Today is the anniversary of my mom’s stroke. Five years. It’s important because most survivors have a repeat event – and of those, most die. I’m grateful that my mom is still here. I’m also frustrated that she’s had the experience she did.
“Women who say there is something wrong are written off, they are misdiagnosed – many pay with their lives. My mother has had to advocate for herself at every single step, post-stroke. She demanded her own referrals, she asked the right questions of the right people.
“She is fortunate in that she has the resources and the time and the ability to do those things. So many other survivors – especially women – don’t have the ability to do the same, which further exacerbates the inequalities in health that women already face.
“We need to continue to invest in research specifically focused on women’s health and how signs and symptoms (and treatments) differ from men’s. No one else’s mom should be misdiagnosed or discounted like mine was.”
NOTE FROM CAROLYN: Both strokes and heart attacks are examples of cardiovascular disease. I wrote more about how these affect female heart patients in my book, “A Woman’s Guide to Living with Heart Disease” (Johns Hopkins University Press, 2017). You can ask for it at your local library or favourite bookshop, or order it online (paperback, hardcover or e-book) at Amazon – or order it directly from Johns Hopkins University Press (use their code HTWN to save 20% off the list price).