I awoke to the sound of my 13 month old son on the baby monitor at 3:01AM today. His nickname is Baby Shark, and therefor the baby monitor is known as the “Shark Cam” in our house. And as happens with sharks, he seems to be getting a lot of new teeth these days. I don’t remember my own teething experience, but I imagine it isn’t pleasant to have hard, pointed objects bursting through fresh gum tissue, and not having enough frontal lobe development or life experiences to understand the pain. Poor little guy.
Once I comforted Shark and got him back to sleep about an hour later, I started thinking about the natural thing most moms might ponder at 4AM – cerebellar stroke. Doesn’t everyone contemplate this neurological phenomenon at that weary hour?
I thought of the cases I have encountered over the years of patients who seek help for dizziness, nausea, and vomiting, who are then sent home from the ER, diagnosed with more benign forms of vertigo or migraines, but are dead three days later from severe cerebellar swelling. They are some of the saddest cases neurologists encounter because they are so tragic. And they can occur in young people. What can begin as neck pain (from a dissected vertebral artery) can rapidly become a catastrophic event resulting in death.
To those of you out there who are forever changed by a cerebellar stroke – whether you are a cerebellar stroke survivor, have a survivor loved one, or have lost someone you deeply loved to a cerebellar stroke, know that I am thinking of you this morning. The young adult with neck pain that became dizziness, vomiting, and instability. The person with atrial fibrillation who tried to do everything right to prevent a stroke but had one anyway. The person who didn’t necessarily do what was advised, had a stroke, and now lives with regret and limitations. I’m thinking of all of you this morning with empathy and care.
Life is so complex, isn’t it? It’s robust, miraculous, and yet hangs in a fragile balance. Every single day’s dawning does not guarantee we will see its conclusion.
As I put my sleeping young son back to bed this morning, I marveled at how perfect he seems. His little hands and toes. His sighs. And even all of those teeth that are erupting.
He has his whole life ahead of him. How long will that be? I hope very, very long.
In 2012, I walked through a cemetery in Cashion, Oklahoma, eager to find the final resting places of my grandmother’s seven siblings and many other long since departed ancestors and relatives. My grandmother, Alta Jane Anderson, was still alive then, going strong in her assisted living facility in Houston, Texas at the age of 92, her mind as sharp as it had always been. She could talk March Madness brackets each year, still read a book every week or two, and never forgot the birthday of any of her children or their spouses, her seven grandchildren or their spouses, or of her 18 great-grandchildren.
When she suffered her ultimately fatal hemorrhagic stroke at 96 years old on my son’s third birthday, April 21, 2016, my aunt put her on the phone with me, and she said, clearly in pain and her speech heavily slurred, “Hi, Sweetie. Is Alexander having a good birthday?” How in the world did she have the mental clarity or compassion in that moment to ask me that, instead of being concerned for herself? To this day, she carries the distinction of being the person containing the most genuine goodness within her of anyone I have ever known.
As I walked through this sleepy rural graveyard, I called Granny on my cell phone, unsure of where to begin in my search for departed family members. Her voice lit up at the sound of mine, as it always did when any of her family called, and then she verbally navigated me to the correct area to pay my respects. Granny was born in 1919, and as I saw the grave stone of her older sister, Lottie, and the year of her death (1918, at age 20), the reality of my grandmother having never met her older sister enclosed around me. Lottie’s three month old infant son was buried next to her, having perished only four days before his mother.
I asked my grandmother what took both of their lives at such young ages. Her reply sounded like something out of a dusty history textbook, from a time in the very remote past: “It was the Spanish flu.”
(Interestingly, this pandemic received its nickname because the Spanish press was free to cover the impact of this flu, not because it originated in Spain.)
After finding other family grave sites, I wandered over to a shaded area beneath the canopy of a beautiful tree, and Granny and I proceeded to have a conversation about the great influenza pandemic of 1918. She recounted her mother’s stories of how her family could not have a proper funeral for Lottie and her son because of the fear around group gatherings, and the fear others had of catching this deadly flu. Burials were significantly delayed because of the high number of deaths within a short period of time, and local undertakers became overwhelmed.
As I sat in the cemetery on that gorgeous Oklahoma spring day, I distinctly remember having this thought: Thank goodness we live in the age of modern medicine and don’t have to live through the heartbreak of such a pandemic.
After all – the influenza pandemic of 1918 occurred during a time when only black and white photos were taken, almost a decade before the first “talking” movie premiered. We had advanced so far past that era.
As I write these words today on April 15, 2020, 33 days after schools shut down in Durham, North Carolina and group gatherings suspended, stemming from the same fears of more than a century ago, they seem naive. Even as a physician at that time, I was operating under the assumption that modern medicine could protect us from another pandemic. I knew that clinical trials and the development of vaccines take years to complete, but at that time, it seemed even to me that our technology, medicine, and people could spare us from another such pandemic of large magnitude.
And I still certainly hope that is the case. That historic pandemic took the lives of at least 50 million people worldwide, 675,000 of which were in the United States when its population was smaller than it is today.
Yet, despite our modern medicine, and brave, highly educated, and experienced doctors and healthcare providers on the front lines delivering care, the mortality rate as of the latest reported data in the United States from Covid-19 complications is at 4.2% (26,977 deaths and 617,628 cases – likely an underestimate of cases but an overestimate of the percentage of infections who die, given the lack of testing in people with mild or absent symptoms).
There is a fear that accompanies the Covid-19 pandemic such that most people have not witnessed anything like it in their lifetimes. I have, however, witnessed it in mine, on the faces of patients for whom I have cared who have suffered strokes at relatively young ages. I have seen numerous individuals who unexpectedly, while going through life in their primes, are stricken with a disease they thought only possible in older or unhealthier people. In particular, when a specific cause for the stroke cannot be identified, many of them initially live in daily fear, wondering if and when it will happen again.
Their fear stems from the unknown, and from the lack of control they have in their situations. Many of these healthy young people have asked me, “How is my cholesterol doing?” When I would inform them that their cholesterol had nothing to do with their strokes, often the question that would follow would be something to the effect of: “So what can I do not to have another one then?”
When Covid-19 existed primarily in China, much of the chatter in the western world among younger and healthier people involved words to reassure themselves that they would be safe, such as: “It’s really only older people and people with weak immune systems who die from this.” While older and immunocompromised patients are in the higher-risk categories for perishing from Covid-19, it didn’t stop the alarm many felt when stories began emerging of healthy young people who had succumbed to the disease. The 30 year old school teacher in New Jersey. The 39 year old disc jockey in Florida. The 17 year old in California. Eventually we learned that up to half of patients ending up in intensive care were under age 65. This did not fit our current ideas about flu, pneumonia, or any other passing viral contagious diseases to which we have become accustomed as a society. How, then, to ease the fear and gain a sense of control again?
What I have witnessed in stroke care since becoming a vascular neurologist in 2010 has been very similar. How do we explain it when a healthy 25 year old dies unexpectedly and quickly from a stroke when she had her whole life ahead of her? Is there a way of ever feeling in control again after witnessing such a thing?
Recently, I observed Dr. Anthony Fauci, the now-familiar face of the National Institute of Allergic and Infectious Diseases, speaking at a press conference, explaining that models were projecting a “best case scenario” of 100,000 to 240,000 deaths in the United States from Covid-19 if social distancing continued. Members of the press immediately launched critically into him. What they seemed to be saying was…we don’t accept that. That’s not right. He kept looking back at them, reiterating that the numbers were suggesting this, that he hoped for a better outcome with continued social distancing, but this is what the numbers suggested at that time, and that he was merely the messenger of this news. They argued with him. They didn’t like it.
As I watched, I thought – so many people in this country have not faced death. They have not seen the fear on a patient’s face as he or she wonders if today is his or her final day. This is the first time in the lives of millions of people when they have truly had to confront the question of how much time they have remaining, and they, understandably, find this distressing.
I have written before on The Stroke Blog about how I try to live my life to the fullest each day, not knowing if each day will be my last, because I have seen so many young people who think they have decades in front of them, only to find themselves struck unexpectedly with disability or death. It led me to a telemedicine career in 2018 so that I could savor my days with my children while they are still young, so they can remember their mother if that last day does arrive earlier than expected. It has led me to reflect on why stroke-related deaths in “young” celebrities impact us emotionally. Two years ago, stroke survivor Brett Patterson shared his story of searching for answers as to why he had a brain hemorrhage in his 20’s. He would be the first to tell you that he lives each day now with gratitude and perspective since that time, understanding that each day counts.
Silver linings exist in each human tragedy, as difficult as they may be to find. In the case of the Covid-19 story, perhaps a silver lining is bringing perspective to millions about the fragility of life such that we can learn to appreciate our days here, and understand what young stroke survivors have already known about the importance of making each day count. It’s the understanding that we can and should follow the recommendations of public health officials to prevent the spread of the virus and save as many lives as possible, but to find joy in the everyday-ness of life. Knowing that the ordinary is extraordinary. Having a conversation with a neighbor. Dining in a restaurant. Taking kids to school. Birthday parties. Working. Life.
Tomorrow is not guaranteed to any of us, global pandemic or not.
Have you ever had the experience of going five, ten, maybe even 20 years and not given a single thought to something, only to find that when it pops up on your radar again, it repetitively re-enters your world in an almost surreal way?
I am having that experience right now with a television show that was incredibly popular when I was in middle school and high school called Beverly Hills, 90210. I arrived in Honolulu, Hawaii a month ago for the International Stroke Conference, and as I was checking in at the hotel, I noticed a blues and jazz club entrance in the hotel lobby – The Blue Note. I did not have anything on the agenda for the evening. My father had just turned 70 in December, and surfing the waves on Hawaii’s North Shore had always been on his to-do list. His flight was due to arrive very late into the night. After checking in, I walked to the kiosk to buy a ticket to The Blue Note, and learned that Vanessa Williams was the singer performing that night!
Excuse me for a moment, but AAAAAAAHHHHHHH!!!!!!!!!!!!
Those who know me best understand that I am quite possibly bordering on obsessive when it comes to music of the ’80s and early ’90s, and nostalgia for that time period, no matter how ridiculous some aspects of those years may have been, runs deep within me. Don’t get me wrong – I savor the present and have a “Carpe Diem!” mindset, and don’t dwell in the past, per se. But I was only a kid then, and man I loved music and TV growing up! I have attended a lot of concerts of ’80s and early ’90s artists and bands, but had not had the opportunity to hear Vanessa Williams perform, even though I very much wanted to do so.
Vanessa did not disappoint. I had the privilege of reliving my childhood through her songs from a serendipitous front table at the base of the stage in the intimate venue of about 120 fans (apparently people had been watching The Super Bowl earlier in the evening?!). Save the Best for Last, Colors of the Wind, The Sweetest Days… but it was Love Is that hit me emotionally for some reason. With the opening notes, my mind immediately leapt back to the Beverly Hills, 90210 soundtrack, the pictures of Luke Perry that some girls had in their lockers, and how much I enjoyed hearing that song on the radio during 1993, a pivotal year as I transitioned from middle school to high school.
After the show, despite being extremely exhausted at this point since it was about midnight in Hawaii and I had flown from North Carolina that day, I was up for hours more, reflecting on middle school days. The joy of newfound independence and responsibility that came with having a locker. The rejection from someone I thought was a friend. Being 5’7″ tall in seventh grade but dancing my heart out at school dances even if I was taller than all of the guys. Learning from some of the most wonderful teachers imaginable. Laughing until I cried. Crying until there were no more tears.
That’s middle school. Or at least, that was middle school before social media and the internet.
I then stayed up even longer, reading online about Shannen Doherty’s battle with breast cancer, and Luke Perry’s acting career since his days as Dylan McKay on 90210. My dad then arrived just before dawn, and we had coffee together while watching the sunrise. What a great start to the trip!
About a week later, on the long journey back to North Carolina, I heard two people in the Seattle airport discussing the television show, Melrose Place. (For those of you who are unaware, it was a spin-off of 90210). Again, strangely, after not giving 90210 a single thought for at least 25 years, there it was in the forefront of my consciousness. Weird? Or just a coincidence?
Unfortunately, I see young people who are disabled or killed by strokes with relative frequency as a vascular neurologist, and focus much of my effort around advocating for young stroke survivors (thus, this blog). It is sobering when I no longer feel surprised when a young person arrives in an emergency department with a stroke. The media is treating stroke in young people as “rare,” but it is not.
And yet, for some reason, despite being fully aware that stroke can strike the young and the old, I was surprised when I heard this tragic news about Luke Perry.
Perhaps it’s because 90210 had already been floating around in my mind since hearing Vanessa Williams perform Love Is.
Perhaps it is because I thought of my middle school-aged self during Luke’s reign on 90210, and I was so young, naïve, and innocent then. I had never seen death. I may not have even known what a stroke was then.
Or perhaps I felt stunned because Luke wasn’t really 52 in my mind. His presence on our television screens was one of youth, and that youth persists in my visual memory of him. He stayed young, even as time moved on off of the set.
Luke’s death is different than many celebrity deaths, because it touches on a vulnerability. Someone still in his prime years, young, and in a way, forever young in our minds, had a stroke. If it happened to him, it could happen to anyone.
But then again…he was 52. Is that young? Yes, I think it is, but it’s not 20 (although young stroke survivors know that one is never too young to have a stroke, but hopefully you will take my point here). Luke Perry was 52. And he died from a “massive stroke.”
And then another thought occurs…I was only in middle school when he was on billboards, in commercials, and on television; I was most definitely on the younger end of the 90210 generation, but despite being on that younger side, a few months ago I turned 40! How is that possible? 90210 (in its original form) was only on TV a few years ago. Was 52 young to me when I was 20? It certainly seems to be young now that I’m 40.
Wait. About the original 90210 being on TV only a few years ago. Make that…28 years ago that it premiered. Where did that time go? There has been much to show for it, but still…wow.
Luke’s death forces members of a generation to face the reality that we may feel young and act young, but we are getting older. Yet, it also demonstrates in the harshest of ways that people who are young can lose their lives very quickly to stroke. I have often written on The Stroke Blog that tomorrow is not guaranteed to anyone. I stand by that assertion.
I sincerely hope a day will come when we can rid the world of this awful disease.
Usually I associate the familiar phrase “The days are long, but the years are short” with the raising of children. It’s astonishing how exhausting days are with the sleep-deprivation that accompanies caring for newborn babies, chasing toddlers, or correcting a sassy pre-teen, but then – BAM!! – they are grown. Where do the years go when the days can seem so long? And as difficult as raising young children can be, when looking back on the challenges, there is an almost surreal quality to it.
It occurred to me recently that my patients have expressed to me this same sentiment with the process of stroke recovery. The long days in the hospital, then the acute rehab process early on with exhausting therapy sessions, then outpatient therapy while trying to return to life as “normal” when a new normal has arisen, and the previous normal no longer exists…wow. These days can drag on and seem absolutely interminable.
But then, the one year anniversary after surviving a stroke eventually arrives, then the two year anniversary, and then – five years have passed. The stroke anniversary remains etched in minds and hearts, and carries its own special significance. When the anniversary passes each year, it can bring many emotions.
Fear – “Will it happen again?”
Grief – “I miss the person I used to be and the life I used to have.”
Discouragement – “My doctor said I will stop improving after a year – does this mean I won’t continue to get better?”
Encouragement – “Look how much progress I have made!”
Victory – “Five years later, I’m making it each day – stroke isn’t going to stop me.”
(That whole you-won’t-improve-after-a-year thing is ridiculous, by the way, particularly in younger patients. Every person is unique is his or her recovery, and I have seen young patients still showing improvement three years later.)
Having heard and witnessed so much devastation that arises from stroke, I began feeling confused over time as some patients began sharing gratitude for their strokes. Grateful? For a stroke? How could that be? And as I have listened, the reasons have been numerous:
“I never would have chosen to have a baby if I had not had a stroke – it forced me to re-examine what I wanted in life.”
“I appreciate the little things so much more now than I did before my stroke.”
“I met the love of my life at a stroke support group.”
“I was so stressed out at work before my stroke and was burning at both ends. The stroke forced me to slow down and re-focus.”
“Before my stroke my house had to be absolutely perfect. The other day I found my two year old son coloring on the living room floor, and I was so grateful for him that it didn’t bother me.” (I have to remember this one patient’s story on a weekly basis.)
Perhaps this is what I find so inspiring about stroke survivors – the resilience in these statements, the search for the silver linings, and the way they keep going after unexpected life-altering events.
The Stroke Blog has been relatively silent recently as I have attempted to find my own sense of balance. Writing has always been a passion, and unfortunately it took a back seat to many other competing obligations over the past year. In the new year, though, it has moved closer to the front, and for that I am immensely grateful. I will be updating you on many topics, and look forward to the ongoing journey.
I have spent the past week debating whether to post publicly about an email I received from The State (South Carolina’s most widely distributed daily newspaper). Ultimately, I concluded that it was important to do so. Stroke patients need a voice, and while The Stroke Blog was started to empower the younger stroke population through sharing information pertaining to their circumstances, empowerment leads to advocacy.
The email response I received from one of the editors, frankly, shocked me: “THanks [sic] but we’ll have to pass. We don’t generally run columns on all these made-up months, weeks and days…”
I had difficulty understanding what prompted this. Stroke has created a public health crisis, has disabled millions of Americans, and remains the fifth leading cause of death in the U.S, killing over 130,000 people annually in our country. In addition to these alarming numbers, according to the National Stroke Association, as many as 80% of strokes can be prevented. Plus, we have effective treatments within the first few hours of when a stroke starts! Therefore, stroke seemed like the perfect condition upon which to build more awareness. It’s devastating, but we have the power to change that on a large scale, both through preventative efforts and by rapidly treating strokes when they occur.
After deliberating, I replied to this particular editor, and explained that Stroke Awareness Month was being recognized by the mainstream media and hospitals across the country. This person’s quick response was that all months/days devoted to causes should be viewed the same way, whether they were about heart attacks, diabetes, “or chocolate or bicycling or … anything.”
At that point, I called a friend who has worked with hundreds of stroke patients professionally, and asked her what I was missing. I understood that there were numerous “_____ Awareness Month” recognitions, but it made perfect sense to me that the importance of calling 911, the recognition that prompt medical attention can save a person from lifelong disability, the understanding that stroke is not just a disease of the elderly, that education about the importance of smoking cessation was critical, that the knowledge that patients with high blood pressure should comply with taking their medications would all be important points for coverage in the media. And raising awareness around issues that can lessen the incidence of a disease that kills so many people annually still seemed like a good thing to me. As much as I love chocolate (and I do – seriously), lumping awareness around stroke and awareness around chocolate into the same statement rubbed me the wrong way.
In talking with my friend, she reminded me that Stroke Awareness Month was, indeed, “made up” – by President George H.W. Bush in 1989 when he signed a proclamation declaring every May as “Stroke Awareness Month.” I then began reading articles, editorials, and reflections about Stroke Awareness Month, and contemplated how important this time is to so many people affected by stroke. One of my favorites was a piece by Kirk Douglas from 2014 on The Huffington Post (click to read it).
I truly believe that everyone has the right to his or her opinions, and the right to express these opinions with language. The State can make its own choices about the importance or lack of importance of Stroke Awareness Month, and I can make mine. I believe we do need more awareness around stroke, because I want to be treating more patients with t-PA and mechanical thrombectomy, but I can’t if they don’t call 911 or get to an emergency department quickly after a stroke starts. If they lie down on the couch to take a nap, there is a good likelihood that it will be too late to treat them once they show up at a hospital. That decision – whether to call 911 or lie down – often alters the course of a person’s life, determines whether that person will ever return to work again, will be able to care for himself or require assistance from others for decades to come.
What ultimately shifts people in the 911 direction over the lying down direction?
Disclaimer: Read no further if you have a special fondness for nursery rhymes and do not wish to have one ruined for you permanently.
Today I awoke to a rainy morning in Charlotte, North Carolina, and it continued to rain throughout most of the day. This evening, the steady rain transitioned into a downpour. One of my children said: “It’s raining, it’s pouring…”
Most of us are familiar with the well known nursery rhyme:
It’s raining, it’s pouring; The old man is snoring. He went to bed and bumped his head, and couldn’t get up in the morning.
I vividly recall this nursery rhyme carrying an entirely different meaning for me after I started my neurology residency. It was a rainy day in Seattle, and as this rhyme came to mind while I was driving, it suddenly struck me – the old man sustained either a subdural hemorrhage or an epidural hemorrhage. He experienced a period of lucidity after hitting his head (enough such that he was able to get to bed), but he did not get up the following morning. The story became grim.
Layers of the meninges (tissue coating the surface of the brain); ref: http://www.merckmanuals.com
The meninges, or the thin tissue coating the surface of the brain, have three basic layers: the dura (outermost layer, which is adjacent to the skull), the arachnoid, and then the pia (adjacent to the brain). When an aneurysm ruptures, typically it is into the subarachnoid space, meaning just beneath the arachnoid layer of the meningeal coating. Thus, a subarachnoid hemorrhage occurs when blood fills the space below the arachnoid layer.
This is a CT scan taken from a patient with an epidural hemorrhage, or bleeding from the middle meningeal artery into the space between the skull and the dura. Note the severe compression occurring on the brain.
An artery that travels between the dura and the skull, known as the middle meningeal artery, is vulnerable to tearing with direct trauma to the skull. Typically there is a brief loss of consciousness followed by quick recovery, and these patients often do not seek medical attention because the immediate drama is so short-lived. However, as blood pools from the middle meningeal artery between the dura and the skull, the pressure on the dura creates significant compression on the brain and can quickly become a fatal situation. This is what occurred as the cause of death in actress Natasha Richardson when she fell while skiing in Canada in 2009. She died at the age of 45.
This is a CT scan taken from a patient with a subdural hemorrhage (the crescent-shaped collection of white material along the inside of the skull is blood), bleeding from a torn vein in the space beneath the dura layer of the meninges. I suspect this was the cause of death in the old man from the familiar nursery rhyme, given that these hemorrhages are more common in the elderly.
Subdural hemorrhages are more common in the elderly patient population. Large numbers of veins fill the space between the dura layer and the arachnoid layer, and as the brain ages and decreases in size (yes, the brain shrinks with aging), more sheer stress occurs on these veins. A relatively small hit on the head, or even a cough or a sneeze, can result in the tearing of one of these veins, and the subdural space begins to fill slowly with blood. The key word here is slowly. This is not usually as rapid of a neurological demise for the patient as occurs in a patient with an epidural hemorrhage, because epidural hemorrhages involve an artery, which carries blood under high pressure, filling the space rapidly. Blood flowing from a vein flows more slowly because the pressure is lower. Picture water gushing from a water hose (epidural hemorrhage) versus dripping slowly from a faucet (subdural hemorrhage). The pattern of blood layering on a head CT scan can also distinguish between an epidural hemorrhage and a subdural hemorrhage as well, as the images reflect.
I now carry the curse and the blessing of pondering traumatic intracranial hemorrhages every time I hear this nursery rhyme performed on a children’s CD or when I see it printed in an anthology. Perhaps I have passed this on to you as well and the rhyme will carry a different meaning going forward. The story of the old man offers an important lesson in neurological vigilance, though.
When a young person hits his or hear head after falling while skiing or in any other traumatic fashion, anytime there is even the briefest loss of consciousness, a head CT scan is strongly indicated, even if it does disturb vacation plans. When an elderly person hits his head just before going to bed, maybe it is not a terrible idea to wake him up several hours later and ask a few questions, just to be on the safe side. It’s also important to remember that after an elderly person hits his head, even if he does get up in the morning, when he still has a headache a week or two later, that head CT scan can be life-saving if it detects a subdural hemorrhage.
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