Stroke survivor Sharon Dreher: “Don’t use a 1-10 pain scale on women who have delivered a baby”

by Carolyn Thomas       @HeartSisters 

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:

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 LeidenFVL -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).

12 thoughts on “Stroke survivor Sharon Dreher: “Don’t use a 1-10 pain scale on women who have delivered a baby”

  1. While reading Sharon’s story I felt like I’d been punched in the gut – and this from a 54 year-old women who has not had a stroke or heart event (and who found this site after her dad suffered both).

    I can only imagine what Sharon feels. It is both horrific and tragic, all the more so because we can choose to act on medical mistakes and misdiagnoses, and we don’t. Cold comfort that the head of neurology apologized to Sharon. The damage is done.

    Liked by 1 person

    1. Thanks for sharing your perspective, Sheila – I had a similar stunned reaction to Sharon’s story. It just seemed like one thing after another, each misstep worse than the one before, during the kind of crisis in which we would all expect to be treated with respect, compassion and skill – especially in such a specialized hospital boasting about its “excellence”.

      I suspect that the apology from the Chief of Neurology was likely not all that Sharon wanted and deserved – as much as she wanted specific assurances that other patients in the future would NOT have to go through the same thing she did – IF that hospital had openly told her what they had learned from “dropping the ball”.

      I hope that your Dad survived his own ordeal and is feeling much better now.

      Take care, stay safe. . . ♥

      Like

  2. I was not aware. But her symptoms were so similar to head injury & increased intracranial pressure. Her MRI should have been read urgently… before any idea of leaving a hospital.

    My daughter suffers from migraines and at least 3 times they have caused transient, many many hours of hemiplegia which looks just like a classic stroke.
    I had a neurologist tell her to stop crying, that she was just being hysterical. Soooo scary!

    People with Hemiplegic Migraines have an increased incidence of True Stroke and need a complete work up with MRI every time it occurs.

    Liked by 1 person

    1. Wow, Jill – a hemiplegic migraine sounds so awful (“temporary weakness, numbness and tingling, and paralysis on one side of the body…”) and as you say, it basically mimics a stroke, yet one day might actually BE a stroke. I’d be less surprised at her delayed diagnosis and unread diagnostics had she been in a small town hospital, but Sharon was seen at a designated “Stroke Centre of Excellence”!

      What a cruel diagnosis your daughter has. I can only wish such a diagnosis on any neurologist who tells a very sick patient “stop crying, you’re just being hysterical..”

      Yes, Sharon’s MRI results definitely should have NOT have sat there all weekend. As the Chief of Neurology at her hospital ultimately admitted, they “dropped the ball” during her hospital stay.

      Take care, and please stay safe. . . ♥

      Like

  3. Thank you for more education. I relate. After 52 days in cardio ICU and the Golden Boy surgeon causing me to code three times and end up w/ a defibrillator, I left w/no caseworker. I had to find all my own resources.

    Liked by 1 person

    1. Good grief. After that long stay in the CCU and all that drama, you have to scramble for help by yourself once you got home?! Yet somehow, all hospitals boast about their “patient-centred” care…

      Your dreadful experience reminds me of a friend who was seriously injured when she was hit by a car (in a marked crosswalk!) Before she was finally discharged from the orthopedic unit after two major surgeries, she was assured that the homecare team, the electric stair lift, the special boosting recliner chair, the raised toilet seat, and all other home supports she’d need to function would be at her home ready for her arrival. Her 90-something year old mother picked her up at the hospital on discharge day, but they found NOTHING had been put into place at home, with no way to even get her wheelchair up about 15 steps to her front door. Her Mum had to go up and down the street looking for somebody, anybody, to lift my friend up the stairs. Finally, she found some kind construction workers building a house a block away who generously volunteered to carry my friend in her wheelchair upstairs. It took three more days for the supports to finally arrive – hardly a way to reassure a person trying to recuperate that she was in good hands.

      Take care, stay safe… ♥

      Like

  4. Maybe slightly off topic but having taken my husband to the ER twice in the last 2 weeks for chest pains and not being allowed to go in with him due to the pandemic, my first and strongest reaction to this story is to wonder how a patient suffering anything so serious and rare today could get the help needed without an advocate in the ER. I understand that hospitals are having to make hard decisions to keep people safe from the virus, but I feel passionately about this subject. I honestly feel that to not have a support person allowed in with you to a medical appointment or an ER visit is a human rights violation.

    My 22yo daughter recently went alone into the same ER as my husband and her severe leg pain was misdiagnosed as sciatica and she was sent home. Two days later she ended up admitted to a different hospital for 4 days with blood clots in both her leg and her lungs. We were beginning to suspect this when she went to the ER the first time — had I been with her I would have insisted she be tested for blood clots. But she was intimidated by a “cranky” male nurse and a standoffish male physician assistant so was basically unable to speak up for herself. Sad to say she will no doubt learn over time.

    She has now been tested for blood clotting issues, including Factor 5 Leiden, which my husband has and father-in-law had, but the results haven’t come back to her yet. Scary to see the connection here between cerebellar stroke (a condition I’d never heard of) and Factor 5!

    As for my dh, it was decided that he had not had any heart attack both times and was told the second time that it looks like gall bladder, which by then we were strongly suspecting, but they didn’t want to keep him there longer to verify that diagnosis so we still don’t know for sure.

    I simply no longer trust that any good care is coming out of our local hospital ER and that is very sad. There is no accountability without advocacy. I’ve started writing letters but not really sure what to do to express my feelings to the hospital administration. The pandemic eclipses everything right now.

    Liked by 1 person

    1. Oh Meghan! I share your worry about patients who do NOT have a competent companion to advocate for them during such a stressful time. Think of the Dads not allowed in the delivery room when their babies were being born, all those people dying alone in care homes and hospitals with no family allowed at the bedside. Yet with COVID numbers spiking and so many hospitals now at or near full capacity, staff are scrambling desperately. It’s an impossible choice, for everyone.

      At the best of times, people come to Emergency because they’re SICK or INJURED. Sick or injured people tend not to be effective at self-advocating… It’s hard enough for a fully functional, not-in-pain person to “insist” on specific diagnostic tests, but it’s very difficult, often impossible, for a sick person to stand up to cranky or standoffish professionals. I can really relate to your daughter’s experience!

      The first wave of the pandemic sent the public a very strong lesson: that COVID-19 patients are more important than whatever is distressing the rest of us. Then doctors noticed that cardiac units were emptying as heart patients stayed away (often far too long). The public health message changed to “Hospitals are safe! Emergencies are still emergencies! Call 911!” I wrote more about this phenomenon here.

      Your daughter’s experience was a nightmare. I hope she is feeling much better now. You’re right, the pandemic seems to eclipse every other diagnosis right now. Not good news if you “just” have blood clots or gall bladder problems…

      Take care, and stay safe. . . ♥

      Like

  5. There is so much vitally important information here.

    Of particular note, I think, is the comment about the pain scale. It is such a typical tool of physicians, who try to oversimplify what can be extremely complex problems.

    I wish that stupid pain scale could be thrown out forever.

    Liked by 1 person

    1. I agree 100%, Sandra! In Sharon’s must-see video of her presentation at the Stroke Congress, she mentions that she refused to give the hospital staff a number when they asked her to rate her pain on the 1-10 scale. She may have been their first patient ever to point out to them what she thought of their scale…

      Have you ever seen the “Better Pain Scale” on the “Hyperbole and a Half” blog? It’s a classic, and very funny. The numbers range from 0 (“Hi. I am not experiencing any pain at all. I don’t know why I’m even here…”) to 12 (“Too Serious For Numbers: You probably have ebola. It appears that you may also be suffering from Stigmata and/or pinkeye.”) – 12 is likely what Sharon would have reported if she’d had a better pain scale…

      She brings up an excellent point in her pain scale observation: there are many very different pain scales in use by doctors (the Stanford model for example actually describes a “10” pain rating as “Unimaginable, Unspeakable”).

      Take care Sandra and stay safe… Happy Christmas to you. ♥

      Like

      1. I agree, there’s a lot of good information here.

        And the pain scale has driven me crazy since I began my microvascular heart disease journey 22 months ago. When asked what level on the pain scale, I add in, “and that’s with my natural childbirth at a 9 1/2, fractured skull at a 9, and ruptured disc at an 8.”

        I usually get a surprised “oh” in response. : )

        Happy holidays everyone

        Like

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