A paper appeared yesterday in The New England Journal of Medicine, adding to the growing body of evidence that clotting is a prominent feature in Covid-19, even if it isn’t always evident. People who develop difficulty breathing with influenza (“the flu”) or more run-of-the-mill pneumonias may look at first like they have similar shortness of breath to those with Covid-19, but this particular study details autopsy results of careful examination of the lungs in patients who have died from Covid-19 versus patients who have succumbed to influenza. The article can be accessed by clicking here.
For those without medical or scientific backgrounds, articles in The New England Journal can be difficult to decipher because of the medical terminology. However, it is worth translating for the public.
Perhaps the two sentences in the abstract (the brief summary of the study presented at the beginning of the paper to gain an overview) that stand out the most to me are: “Histologic analysis of pulmonary vessels in patients with Covid-19 showed widespread thrombosis with microangiopathy. Alveolar capillary microthrombi were 9 times as prevalent in patients with Covid-19 as in patients with influenza.”
Translation: The lungs of the patients who died secondary to Covid-19 had wide-spread clotting, nine times more blood clots and blockages in the thousands of small capillaries and blood vessels in their lungs, compared with the lungs of patients who died from influenza.
This could be why patients with Covid-19 go from talking to their healthcare providers in emergency departments to abruptly dying, and why so many who are on mechanical ventilators still don’t do well. It’s difficult to ventilate lungs that are full of blood clots. How can oxygen and carbon dioxide pass across the walls of blood vessels if these blood vessels are solidly, unabashedly blocked and blood is not flowing?
We have heard reports about young people with Covid-19 showing up with strokes. Reports of blood clots in arms/legs/fingers/toes are becoming more prevalent. This recent study confirms evidence at the cellular level that clotting is a feature of Covid-19.
On April 28, 2020, a letter published in the New England Journal of Medicine describing blood clots in large arteries supplying the brain (known as “large-vessel strokes”) in young patients testing positive for Covid-19 brought media attention to this particular facet of a disease physicians, healthcare providers, and researchers are endeavoring to understand. (Click here to read the brief NEJM letter.) The letter’s authors have been treating patients with Covid-19 in the Mount Sinai Health System in New York City. They note that, on average, every two weeks their hospitals typically encounter 0.73 patients with large-vessel strokes who are under the age of 50, but within a two week period, they encountered five, and all were Covid-19 positive. It’s a small sample size, but the trend is concerning.
As time passes and more information is published about what this disease looks like in its various presentations, it seems to start in many patients as a respiratory illness, but when patients become ill with it, it is because it has transitioned into a disease involving blood clots and/or severe inflammation within the arteries. Report after report has emerged of patients who are awake and talking with emergency medicine physicians and healthcare providers, who then quite suddenly go into cardiac arrest and die. Stories of patients losing limbs and fingers/toes due to blood clots are emerging. Lungs are full of blood clots (pulmonary emboli) in many patients. Stroke is yet another complication of blood that easily and readily clots when the brain is the organ on the receiving end of that impact.
And now children, who were initially thought to be safe from Covid-19, with “mild” or no symptoms initially, are being reported as developing inflammation within their arteries and going into heart failure, in what is similar to a syndrome known as Kawasaki disease.
(Click here for a good mainstream media article summarizing various effects of Covid-19 in layman’s language.)
As for my own patients – what I am personally hearing from people who have experienced strokes in the past who have been infected more recently with Covid-19 is that they seem to be losing the progress they made previously through rehabilitation and time. Old stroke symptoms from their prior brain injuries are rearing their ugly heads again, and deficits that they thought were in their rearview mirrors have now arisen again. This can happen after a stroke with any bodily infection, whether it is a urinary tract infection or pneumonia, and is called recrudescence.
As businesses begin the reopening process, we are still seeing tens of thousands of new cases emerging daily in the United States, and the death count in this nation now exceeds 78,000. Mind you, this is the death count. We’re not talking about patients who survive Covid-19 with long-term scarring in their lungs, or those who have suffered limb amputations or disability associated with strokes. We also still do not know what the long-term toll of this disease is. It was only about seven months ago that this virus began infecting human beings, and we really don’t know what the long-term effects will look like a year, five years, or ten years down the road.
I’m not trying to be unnecessarily alarmist or cause panic. I care about our economy. I deeply care about jobs, livelihoods, and businesses. But as a physician, I am being real.
I also know that people who need to get back to work will not be successful in the work place long-term if they are trying to recover from the aftermath of strokes, or if they have long-term breathing problems because of the lung damage they have sustained. I am looking at the Covid-19 pandemic as a long-term battle, and do not want all of the sacrifices that have been made to fight it to be in vain if/when it just keeps returning.
I mentioned in my previous blog post that Dr. Anthony Fauci announced to the press in March that models were projecting deaths of 100,000 to 240,000 people in the US, and reporters argued with him in disbelief. They didn’t like it. They didn’t accept it. He basically said he hoped for a better outcome, but the numbers were what they were. We are getting closer to this estimated range each day.
We can feel emotionally impassioned, bored, scared, or beyond ready to resume life as we knew it only a few months ago.
But unfortunately, viruses don’t play by our rules.
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.
I was born in Houston, Texas, and have fond memories of going to the Astrodome in the 1980s with my grandfather to watch the Astros play baseball. They knew that orange was the new black way before Netflix existed, as did their fans. This year, needless to say, I excitedly cheered them on this year’s impassioned team during the World Series, and while they ended short during game 7, man – what a fun journey. Congratulations to the Washington Nationals on a hard-earned victory, and to my Astros on a fantastic season!
As I have watched games this year with my baseball-enthused fiancé (who became my husband on October 12th, thus my new last name!), I began reminiscing on World Series from years past. In particular, I remember watching the Atlanta Braves (the popular team in my area as I was growing up in South Carolina) take on the Minnesota Twins. It was another seven game wild ride, with the Twins as the victors ultimately in game 7. I could not go away disappointed, though, because over the course of the Series I grew to like the Twins. In particular, a player named Kirby Puckett captured my attention. Fans in the stands held up signs that read: “Puckett Will Park It.” When he retired from baseball in 1996, his batting average was the highest of any right-handed hitter since Joe DiMaggio. He was strong, enthusiastic, and brought his A game when it mattered. He was inducted into the hall of fame in 2001 (his first year of eligibility).
After reminiscing about Kirby Puckett’s years in baseball, I asked my at-the-time fiancé, “Whatever happened to Kirby Puckett?”
He replied: “He died a while back.”
Whoa! Say what?
When I took to the internet to figure out what happened to Kirby Puckett, I learned that he died from a hemorrhagic stroke at the age of 44, thought to be due to high blood pressure. His health had declined after leaving baseball, and stroke did not have mercy on him simply because of his relatively young age. He was the second youngest baseball player inducted into the hall of fame while still living (Lou Gehrig being the youngest). Having been an elite athlete earlier in life was not enough to save him from the devastating effects of stroke or the diseases that increase the risk for it.
For those of you with hypertension (high blood pressure), I implore you to follow up regularly with your healthcare providers. High blood pressure may not “hurt” in most cases, but unfortunately the first real symptom of it can be a stroke, heart attack, kidney failuure. Hypertension is the number one modifiable risk factor for stroke (meaning – the top condition leading to stroke that we can actually do something about; age is the top risk factor, but nobody has figured out how to stop the clock yet).
High blood pressure is not to be ignored, and it is not to be taken lightly.
On the evening of February 13, 2019, I awoke from a deep sleep and could not feel or move my entire right leg. I recognized that it belonged to me, but when my brain would command it to move, nothing happened. It just laid there, a significant portion of my body, not responding.
I did not have a stroke.
Several weeks earlier, when I jumped over an inlet of water on the beach, as I landed my right leg bent sideways (ouch!), and I felt my knee effectively come apart. Sorry if this is gross, but it’s the truth – I could feel two bones (femur and tibia) separate when I landed, and then snap violently back together. I was instantly filled with dread, wishing I could hit the rewind button and not have made that jump.
The same thing happened to me during my regional track and field meet my senior year in high school 22 years earlier after a landing-gone-bad during the long jump event. At that time, I had torn my ACL and MCL (two ligaments that provide structural stability to the knee) as well as my meniscus (the cartilage cushion for the knee). It required surgical reconstruction, six weeks of immobility after surgery, and then months of extremely painful rehabilitation to return to walking/running. When I landed on the beach in the same way as I had landed during that fateful long jump in high school, I thought – surely I haven’t torn my ACL and meniscus again. What are the chances?
It turns out that it’s pretty common to tear a grafted ACL after an earlier ACL injury. As a physician, I believe I learn something new every day. The MRI the following week confirmed that I had torn my grafted ACL and my meniscus while also fracturing the top of the tibia (known as the tibial plateau – a common fracture to sustain with an ACL tear).
It is not melodramatic to say that I had moments of terror at the thought of going through surgery again. When I underwent surgery at 18, I had not yet become a neurologist, and had not seen a multitude of strokes that occurred in healthy patients while they were under anesthesia for procedures, but now I had. I feared I was going to awaken during surgery. I feared that I would develop a wound infection after surgery that would spread and that bacteria from that infection would start growing on my heart valves and in my brain (physicians can make horrible patients, by the way). I feared that I would experience a complication during surgery beyond what anyone thought possible and would end up in a medical journal as a case report. I had listened to the “Dr. Death” podcast – what if the surgeon did something completely awful to my knee and I was never able to walk again? My perspective was heavily biased, because I was so much more aware of the worst-case-scenarios this time around.
My fiancé continued to reassure me that I would be okay, and that I would return to running by the spring. He clarified that he would help me after surgery while I couldn’t drive for six weeks, and while I couldn’t get up and down the stairs in my house.
Anyway – I underwent surgery on February 13, 2019 to have my Humpty Dumpty knee put back together yet again. When I awoke from anesthesia 22 years earlier, almost immediately I experienced tremendous pain, and then severe nausea from any pain medication given to me. I don’t know if the pain or the nausea was worse. This time, though, I felt absolutely no pain upon awakening, because I felt nothing in my leg. A femoral nerve catheter had been placed by the anesthesiologist, effectively putting my leg to sleep. It was a surreal, bizarre feeling to have lost all sensation and movement in a limb essential for walking. For three days, I felt humbled every time I could not get myself onto a commode or could not shower or bathe without substantial assistance. I could not perform my activities of daily living (“ADLs,” we call them in the stroke and rehab world).
This loss of autonomy and independence sent me into a deeply reflective state as I recognized what my patients who have survived their strokes experience. I had the great privilege of knowing that once the nerve catheter was removed I would regain movement and sensation in my leg. Stroke survivors lack that guarantee. Some of it may return, or it may not. I had confidence that in the coming days/weeks I would be bathing, toileting, and getting around independently, that this was a temporary inconvenience. Stroke survivors lack that confidence. While my fiancé was a wonderful source of support in caring for me, being so dependent on another person when independence has been a given is frustrating. I felt guilty for being an imposition to him, even though he assured me he didn’t see it that way. How guilt-ridden so many stroke survivors must feel when they are in that position, potentially for years or even decades.
Fortunately, none of the worst-case-scenarios happened. Dr. Jonathan Riboh performed my surgery at Duke, and there were no wound infections, misplaced hardware, and no strokes while under anesthesia. This past week he gave me my clearance to start running again, and as I felt repaired knee carry me reliably during my run this morning, deep gratitude filled me to the brim. My knee seems to be in fantastic shape, perhaps even more stable than it was before my beach mishap! Thank you, Dr. Riboh.
Dr. Michael Kent, my anesthesiologist, not only ensured that I did not awaken during surgery, but that I woke up after surgery in good shape, and that I did not endure the excrutiating pain that had made me so miserable 22 years earlier. His placement of the nerve catheter also gave me a lesson in stroke awareness that, despite spending my days evaluating and treating stroke patients, had its own uniqueness to it. Thank you, Dr. Kent.
How often does a physician get to walk in the shoes of her patients temporarily, to feel what it truly is like to lose use of a limb? I recognize that I did not experience trouble swallowing, neuropathic pain, the loss of my dominant hand, the ability to speak, or any number of other disabling deficits that so many stroke patients face. But I remain grateful for the experience all the same.
May is Stroke Awareness Month. I encourage stroke survivors who feel comfortable doing so to share their stories as a way to raise awareness in their communities. Stroke is number one cause of long term disability in the United States and the fifth leading cause of death. We have highly effective therapies for treating strokes when we are able to treat patients early, before the brain has been significantly and irreversibly injured. The later a patient arrives at the emergency department, the less likely it is that his or her stroke can be treated. Awareness that symptoms such as a facial droop, difficulty speaking, slurred speech, and loss of movements/strength in an arm and/or leg could mean a stroke is occurring often makes the difference between calling 911 and staying at home to wait it out.
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.
Since completing my vascular neurology fellowship in 2010 and entering practice in North Carolina, I have had the great privilege of evaluating, caring for, and guiding-through-stroke-aftermath hundreds (perhaps thousands at this point) of young stroke survivors. When I reflect back on the trust that so many young adults whose lives have been forever changed by a disease they never expected to strike have placed in me, it is both humbling and invigorating, and I will forever be grateful for each and every one of these encounters, for I have learned something new from every unique experience.
I made the decision to leave my full-time job last year, and provided a six month notice indicating such in June 2018. Since making the decision to embark on a new career path (more on that in a bit), I have received numerous emails, Facebook messages, calls, and texts from friends who also know young stroke patients I have met – wanting to know why I left and where I went, if I went anywhere at all. I hope I can successfully offer an explanation here.
To start, I will share some of what my professional life looked like prior to my decision to change course. These words will also hopefully convey what the lives of many physicians are like. Our academic calendars in teaching hospitals run from July 1st through June 30th. During the academic year of July 2017 through June 2018, I was on call in some form 24 hours a day, seven days a week, for 26 weeks. Put another way, every minute of my life for half of my life that year I was on call. Overlaying this, patients I had seen in clinic would call with questions, send electronic messages, request that paperwork be completed. Just about every night, after running nonstop all day long while on call, I would get to my “in basket” late at night. I lost count of the number of times I fell asleep sitting upright with my computer in my lap, only to be awakened at 2AM by another page.
During weeks when I was not on call, I evaluated patients in the clinic setting, taught students and residents (both activities that I loved at their cores), carried several administrative titles with responsibilities, attempted to catch up on weeks of email from on call weeks, attended meetings, and if there was time, tried to write. Then, in there somewhere, I also had four young children who craved my time and attention.
Please don’t misunderstand my tone – I am not complaining, but merely describing my existence behind the scenes. While I thrive on caring for patients with strokes, and I cannot imagine any other profession I would rather have, after the years of intense on-call hours consuming 50% of my life each year while also yearning to spend time with my children, trying to maintain relationships with those I love, and fueled by a desire for decent sleep again, I reached a point of recognizing that I needed more balance. For years I could not admit this to myself. After all, I had never had a stroke, so my fatigue could not possibly rival the suffering of my patients. And I had many colleagues in both my field and in other areas of expertise who lived similar existences (or worse – years ago, I had a colleague in a procedural specialty who was on call 100% of the time when he was in town, which was about 46 weeks a year).
Year after year, I kept going, until last year, the year of being on call for half of my waking and sleeping hours. Eighteen of those 26 weeks of that particular year were hospital on call weeks, which meant I was physically in the hospital caring for patients on both weekdays and weekends. Over the years I have missed or been noticeably late for countless rec league basketball games, sports practices, piano and violin lessons, and swim meets. My children used to groan when my pager went off at dinnertime or while I was reading bedtime stories with them, but I knew things had to change when the groans stopped with each pager alert and instead they remained quiet with dejected facial expressions. It was almost like the final stage of their grief – acceptance.
As I detailed in a previous post (if you are interested, click here), one of the wonderful experiences I gained during my time at Duke was becoming familiar with Duke’s telestroke network. Briefly, the idea behind a telestroke network is to place a neurologist at a stroke patient’s bedside in communities where neurologists would not otherwise be available. When I would receive a telestroke page, I would sign onto a computer, securely video conference with the patient in whom stroke was suspected, and partner with the emergency medicine or internal medicine physician at the hospital requesting help on which steps to take to properly and rapidly treat the patient. It has amazed me that so many hospitals across the United States who have never had access to neurological care for stroke patients can now have a neurologist at the bedside within minutes under this model. Patients in these areas are receiving IV t-PA (the “clot-busting” medicine) at much higher rates because of this access, and those who are eligible for thrombectomy (a procedure in which a large blood clot is removed from an artery) are being selected for transfer to hospitals where this service is available.
I have had many a patient encounter in the outpatient clinic
setting that has led me to feel sadly remorseful as I ponder why a patient did
not receive IV t-PA when it seems from the person’s story and medical chart
that it should have been an option, but it was not administered in those first
critical hours. Why didn’t an eligible patient receive IV t-PA? Why didn’t an
eligible patient undergo thrombectomy when numerous clinical trials have shown
how beneficial it can be to long term outcomes? Frequently it is a matter of
lacking quick access to neurologists who are comfortable evaluating these
patients and backing up emergency medicine providers in implementing these
As I pondered last spring how to achieve more personal balance while also continuing to treat stroke patients, I began to consider the reality that so many patients are disabled or not disabled based on what happens in those first critical hours, and that I could have a phenomenal impact if I focused my time on working with telestroke networks. I could evaluate hundreds, if not thousands, of patients each year, help emergency providers distinguish between stroke and conditions that mimic stroke, treat eligible stroke patients with IV t-PA, coordinate getting eligible patients to sites to undergo thrombectomy, and so much more.
As I investigated the possibility of performing telestroke work full-time, I found a number of hospital systems seeking vascular neurologists to provide telestroke care. Among them was Sentara, a healthcare system comprised of 12 hospitals and numerous outpatient clinics in Virginia and North Carolina. As soon as I spoke with the medical director of the telestroke program at Sentara, I knew I wanted to be a part of it. I also became aware that my medical school alma mater, the Medical University of South Carolina (MUSC) was seeking to hire more vascular neurologists for its telestroke network. I was already part of the Duke telestroke team, and months after my notice of resignation from my full-time position there, we worked out an agreement for me to continue to provide telestroke coverage.
In addition to having the opportunity to provide a lot of care to a lot of patients under this model, I also knew it would give me flexibility – the ability to work from home, to control my hours such that I could prioritize time with my family, and to limit the stretches during which I was on call so I could sleep regularly. So far, the journey has been beautiful. I have sincerely enjoyed telestroke work thus far, and feel that balance has finally been achieved.
When I find that I have free time now, I am using it to write. I had started writing a book in 2017 on cerebral venous sinus thrombosis, but my work load and rigorous on-call schedule had prevented me from completing it. I’m back on track with it, expecting to publish it by the end of 2019. The Stroke Blog is up and running again. Amanda Anderson (my co-author, former patient, and friend with whom I collaborated on Carotid and Vertebral Artery Dissection: A Guide For Survivors And Their Loved Ones) and I are in the process of outlining another question and answer guide for stroke survivors. Many people have passions that drive them, and writing has always been one of mine. Without writing, I feel that a void develops in my life.
For those of you who were my patients, I wish to communicate the following: First, thank you again for your trust. Please know how much I learned from you, and how deeply I appreciate the encounters we had. I truly loved tracking down the sources of your strokes, working on action plans with you for how we were going to prevent further strokes, and determining how we were going to address symptoms from your stroke aftermath. Caring for stroke patients in a clinic or a hospital grew into my passion for advocacy for stroke survivors because of what you were willing to bravely share with me. Caring for stroke survivors is much more than just a job to me.
At this point, I am not in a new outpatient clinic or an environment to do outpatient work. However, I am very interested in starting an online telemedicine practice to provide this very service for young stroke survivors. I have seen what telemedicine can do in the format of telestroke networks, and can only imagine the possibilities with an online e-medicine practice. We think of medical practices as residing in a bricks-and-mortar building, where patients transport themselves or are transported by others to this building during traditional business hours, wait in a waiting room (sometimes for hours if the office is running behind schedule), and receive a limited amount of time with a specialist provider. I want to change that.
Imagine that you have an appointment with a specialist who is 200 miles away at a big hospital, and all you have to do to physically see and speak with that person is log on to a computer or bring up a phone app. If the physician is running behind, he or she texts you to say he or she is behind, and instead of sitting in a waiting room for minutes or hours, you go about your day at work or in your home. When it’s your turn, he or she texts you, you sign on, and the visit starts. No travel time, no parking hassles (huge deal for stroke patients), no hotel room or airplane flight or additional gas in the car. No taking the day off of work or having to find someone to watch the kids. Does this have potential? I think it does.
To summarize the answer to the question of…where did I go?
The answer is…I am still here, although my path has changed. And I am very much looking forward to what each day brings. You have all taught me that life is precious, time is a gift, and nothing is to be taken for granted. I have witnessed wonderful mothers and fathers who are younger than I am now with their lives abruptly and unexpectedly cut short by stroke. If my life were to suddenly end, my great hope is that my children will know how much I loved them, and will cherish the time we had together.
Despite how much we attempt to keep the risk of stroke for
ourselves as low as possible, none of us are immune from having a stroke
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.
August 5, 2017 was a typical night for my girlfriend and me: quiet dinner, just the two of us, followed by dessert at Amelie’s, a popular bakery in Charlotte, North Carolina. After arriving home, little did we know that the night was only getting started.
At around 1AM, Jessie awoke to my arm twitching. I told her I couldn’t move it, but we thought I had just slept on it wrong. A few minutes later, I realized I couldn’t move the entire left side of my body. This was coupled with a noticeable facial droop. Panic started to set in, and neither of us knew what to do. Luckily, I had family close by, and my older sister came right over. The next thing I remember, paramedics were by my side and I was being rushed to a hospital.
Brett is seen here during his hospitalization after his brain hemorrhage. He has only a patchy recollection of his days spent in the hospital.
The following few weeks were a blur. I’ve been able to piece the events back together with the help of family and friends. I spent six days in the ICU, another week in intermediate care, and was then discharged to a rehab facility to start intense physical and occupational therapy for my arm and leg. While I don’t remember much about my time in the hospital, I do remember one morning a nurse coming in and taking sixteen tubes of blood in order to try to get some answers. Some routine tests, and some sent off to the Mayo clinic for a more comprehensive analysis. Regardless, the tests all had one thing in common – they came back negative.
While I was hospitalized, countless doctors and nurses would enter the room and perform scans, MRIs, and other medical tests that I didn’t even know existed. The only consensus was that I had a right-sided intracerebral hemorrhage in the basal ganglia (structures deep within the brain, a common location for bleeding, although not in someone my age), which resulted in left-sided weakness. It looked like your classic brain hemorrhage caused by high blood pressure, or so I was told.
There was only one problem: I was a healthy 28-year-old man with no history of high blood pressure. My blood pressure was not even high the night of the stroke when the paramedics evaluated me.
Even after being transferred to the rehab hospital, more doctors came in, more tests were done, but no diagnosis was reached. The two weeks I spent at the rehab hospital were both challenging and eventful. In that 14-day time span, my nephew was born six weeks early and my grandmother was in and out of the hospital twice for her own medical reasons. My mom was a trooper, running around to three different hospitals and getting very little sleep. Despite this, I never spent a night alone in the hospital. My family, friends, and girlfriend provided me with more support than I could have ever expected.
Brett learned how to walk again with the assistance and encouragement of many physical therapists along the way.
After two weeks in the rehab hospital, I was healthy enough to return home and start my outpatient therapy. I had entered unable to walk independently, and I left walking with a cane. I was able move my arm a few inches side to side, but otherwise it was unable to perform any tasks. However, I knew the recovery process was just beginning, and I was told by many doctors that I could make a full recovery since I was young and healthy. Hanging on to that notion was reason enough to work hard and keep moving forward.
While I was still hospitalized, one of my neurologists highly recommended to my mom that we travel to Duke University to see Dr. Dodds in order to try and find more answers. Even though I was starting to accept the unknown etiology, I wanted to exhaust all options before throwing in the towel. Within days of arriving home, I told my mom to make the call to Duke. Little did I know it would be the best decision I’ve made in a long time.
Three weeks later, I made the trip to Durham with my mom, girlfriend, and brother and met Dr. Dodds. She looked at my images and noticed right away that not only did I have a hemorrhagic stroke, but I had also suffered an ischemic stroke as well. She felt there must be a unifying diagnosis to explain the presence of both hemorrhage and ischemic strokes occurring as part of the same event. We sat down for over an hour going through the weeks leading up to that eventful night. I had been sick a few weeks prior to the stroke, going to the doctor several times for headaches, fever, and a rash on the right side of my body. Dr. Dodds said she wanted to ponder everything for a couple of weeks, talk to some colleagues, and get back to us with more answers.
At 9AM the very next morning the phone rang and it was Dr. Dodds. She said it hit her very early in the morning, and she thought she knew what caused my stroke. “Brett, have you heard of varicella-zoster virus?” With little medical background, I told her I was not aware of it. She went on to explain it’s the shingles virus (which explained my rash), and she thought the virus may have gotten into my spinal fluid, causing the brain bleed and thus, causing my stroke. Varicella-zoster virus can infect the blood vessels of the brain, causing both brain hemorrhages and ischemic strokes. She said there were cases published in the medical literature of patients with this particular problem with MRIs that looked very similar to mine. The only real way to confirm her theory would be through a spinal tap.
Lo and behold, the spinal tap confirmed the unimaginable. The virus was present in my spinal fluid. Who would’ve thought? Shingles virus getting into my spinal fluid and causing a stroke? Of all of the possible diagnoses for a brain bleed, I felt very fortunate that at least mine was treatable. Unlucky to have experienced this in the first place, but fortunate. Since that time, I’ve been on two rounds of antiviral medication and will go in for my third spinal tap in a few weeks. The viral numbers came down on the second tap, and they were getting closer to the ‘negative’ range on that study.
Brett traveled with his family to New York City in December 2017, his first time flying since his stroke. The first travel experience after a stroke is often a milestone for young stroke patients.
After lots of PT and OT, I sit here today typing this story with both hands. I’m able to walk on my own, traveled to New York City last month with my family, and have started working with a therapist on getting back to jogging, playing golf, and hopefully returning to work eventually.
I share all this publicly for one very simple reason – DON’T STOP LOOKING FOR ANSWERS. It would’ve been easy for me to accept the unknown etiology and just move on with my life. However, I needed the answers, if not for myself, for my family, and everyone who spent countless hours by my side helping me through this difficult time.
Although my diagnosis is rare and may not be relevant to all, I encourage any stroke survivor without answers as to what caused his/her stroke to explore all options. Seek a second opinion. Ask if there are case studies published that might relate to your stroke. Don’t stop until you are satisfied. I found my answers, and with the right help and guidance, you might find yours as well.
When I started The Stroke Blog in 2014, I had a few ideas of what readers might be seeking. In fact, I kept a running list of topics that I thought patients would find informative. I am now humbled to admit that cerebellar stroke was not on that original list. I had diagnosed and treated hundreds of cerebellar strokes at that point, and had noticed that a number of these patients had complaints that extended well beyond balance and coordination difficulties, but I had not considered writing a blog post devoted entirely to cerebellar stroke. When I heard a segment on NPR in 2015 about a man who was born without a cerebellum, I thought: Okay, I haven’t blogged about cerebellar stroke yet. I’ll put it out there. The result was “Cerebellar stroke – it’s about more than coordination and balance.”
Over the months that ensued, the response was much more robust than I had anticipated. For the past year and a half, without question, this is the post that receives the most daily traffic. It is the post that has received the largest volume of comments from readers. For the past few weeks, I have been reflecting on why this is the case, and I have a few ideas.
First, cerebellar strokes are largely “invisible” in the aftermath they create, meaning they can leave a patient feeling miserable or limited (or both), but this may not be evident to those around them. Because of this, cerebellar stroke patients may be expected to perform at their pre-stroke levels when this is either challenging or impossible for them. Next, many of them are told by healthcare providers when they experience word-finding difficulty, emotional problems, difficulties with concentration, or other symptoms not strictly related to coordination and balance that these parts of their “new normal” do not stem from cerebellar injury (but they actually can). Additionally, cerebellar strokes can be very difficult to diagnose, and are often misdiagnosed initially as benign paroxysmal peripheral vertigo (BPPV), Meniere’s disease, or migraine.
In an effort to keep the dialogue about cerebellar stroke going, I believe that if we as healthcare providers who are likely to encounter patients with this diagnosis can adhere to the following items, care will be substantially enhanced:
Order the appropriate radiological imaging study. A head CT scan’s sensitivity in revealing evidence of an ischemic process (lack of oxygen-rich blood flow) in the cerebellum is extremely low during the first 24 hours. A brain MRI is a much more sensitive radiological study for identifying early stroke, but even this study isn’t 100% sensitive. Additionally, if a stroke has not occurred yet, but blood flow to the cerebellum is severely restricted because of narrowing in one of the arteries upon which it depends, a CT-angiogram or MR-angiogram would be the appropriate noninvasive radiological study to obtain, because a regular brain MRI is unlikely to declare the existence of the underlying problem.
You don’t know if you don’t look. Many a patient with cerebellar stroke has initially been thought to have vertigo of a benign etiology based solely on clinical suspicion. Patients with cerebellar strokes can look exactly like patients with benign forms of vertigo. Medical students are taught to perform the Dix-Hallpike maneuver (the patient sits upright and then is abruptly reclined with his or her head hanging off of the back of the bed with the head turned and eyes staring far to the side – for more information click here), and that with this technique they can distinguish between vertigo originating from the inner ear and “central” vertigo (such as from a cerebellar injury). The truth is, if a cerebellar stroke patient is abruptly tilted backwards, vertigo, nausea, and nystagmus (jittery eye movements) can arise, just as they can if there is a problem in the inner ear. A normal Dix-Hallpike maneuver is not helpful in making a diagnosis, and a “positive” one can still be either a cerebellar stroke or more benign vertigo.
Cerebellar strokes can quickly become life-threatening. The cerebellum sits in a very tight spot just below the back of the brain in an area referred to as the posterior fossa. Very large cerebellar strokes may not seem that severe clinically, but when the cerebellum starts swelling, brainstem compression and death can occur quickly. However, correctly diagnosing a cerebellar stroke and recognizing signs of neurological worsening saves lives. A suboccipital craniectomy is a surgical procedure in which a portion of the skull overlaying the cerebellum is removed, allowing the cerebellum room to swell without putting as much pressure on adjacent brainstem structures. Suboccipital craniectomies are recommended by the American Heart Association/American Stroke Association when patients with cerebellar stroke show signs of neurological deterioration and there is evidence of cerebellar swelling.
The aftermath of cerebellar stroke is not limited to balance and coordination difficulties in some patients. I elaborated on this statement in the earlier referenced post, which can be found by clicking here.
Cerebellar stroke recovery is all over the map. Some patients do fabulously well in recovering from cerebellar strokes – it’s all like a bad dream, and they know it happened, but they don’t experience noticeable aftermath from it. Others may have lingering, refractory vertigo. Some have severe migraines, or language difficulties, or swallowing problems. There is no one-size-fits-all formula to cerebellar stroke, so it’s important to keep an open mind when these patients approach us for help.
One of the most meaningful parts of my neurology residency training was learning how to treat patients with carotid and vertebral artery dissections. Not only was I fascinated with the concept that a young person could sneeze or cough and severely injure an important artery as a result of such a benign action, but I was surprised by how frequently we identified dissections, yet they were referred to as “rare.” They did not seem rare to me, but I figured I was biased, given the specialty I had chosen to pursue.
Following my vascular neurology fellowship completion, I then moved to Charlotte, North Carolina, and continued to frequently make this diagnosis in young, healthy individuals. I found that many of them were presenting to the emergency departments in the area with headaches and/or neck pain, and were diagnosed as having migraines or muscular spasms until I would recommend imaging of the arteries in the neck before sending them home. When imaging studies would reveal dissection of a carotid or vertebral artery, there was usually relief from both patients and healthcare providers in identifying a treatable cause for symptoms, and in knowing that we could lower the risk of stroke from that point with the appropriate management. As I saw more dissection patients in the outpatient clinic setting, I learned that many of them continued to suffer with pain, anxiety, migraines, insomnia, fatigue, and difficulty concentrating, to name a few concerns. I heard these concerns voiced from dissection patients who had suffered strokes, and from those who had no evidence of stroke on MRI. I also observed that even patients whose follow up imaging indicated that their arteries were now “healed” they still had lingering symptoms.
Over time, I found that I was having the same conversations and answering the same questions repeatedly when talking to dissection patients and their loved ones. By 2013, I thought: “Someone should compile the questions these patients have in book form and attempt to answer them.” There was no such book available, and it seemed very much worth writing, if the right person would make the time for it.
On January 1, 2016, about six months after I had joined the faculty at Duke University, Amanda Anderson, a speech-language pathologist in Charlotte, a friend, and herself one of my former carotid artery dissection patients, contacted me, telling me she wanted to work on a “project” to distract her from the daily unrelenting pain that had come to define her dissection aftermath. She had already published a workbook series for patients with language impairment (aphasia), and I knew she would be a great collaborator. I decided that since the “right person” had not made time to write the book for patients that I thought needed to be written, then I would have to be that person.
We decided early into the planning process to write much of the book in a question-and-answer format, and that we would make it as comprehensive as possible, but provide explanations that were easy to understand. We also wanted the book to illustrate that carotid and vertebral artery dissection patients are real people with real lives, and found plenty of brave patients from around the country (and even one outside of the US) who were willing to share their stories. We wanted many of the personal stories to be written by the patients themselves in order to provide their perspectives in their own voices.
It has been such a moving, unforgettable journey, and a regular reminder of why I love this patient group so much. Amanda’s relentless enthusiasm and her compassion for her fellow dissection survivors has sustained me during busy times when it was challenging to find time to write.
I sincerely hope that if you or a loved one has experienced a carotid or vertebral artery dissection, this book provides answers to your questions, and perhaps just as important, validation of your experiences.
Those were the chilling words my husband and I heard when I was 29 weeks pregnant with our third child. We were told by the perinatologist that our unborn baby’s brain ventricles were enlarged and she would probably have hydrocephalus, a condition that results when spinal fluid cannot leave the brain and can lead to increased pressure within the skull. He couldn’t tell us much more than that. We prepared for the worst and hoped for the best over the rest of my pregnancy.
Our daughter, Michelle, was born just shy of 36 weeks, and the neurosurgeon was at the delivery to confirm that she did, indeed, have hydrocephalus. Three days later, when the neurosurgeon placed a shunt (a “pump”) in her brain to divert the flow of spinal fluid, he came to us with “good” news. Her hydrocephalus was a result of a brain hemorrhage that she had suffered sometime during my pregnancy. Apparently, a hemorrhagic stroke was a one-time “event,” which meant she didn’t have any other underlying major medical conditions.
Or so we thought.
At three months old, we and the team of doctors following Michelle noticed that she wasn’t using her right arm. The first red flag. Babies should not show a hand preference before one year of age. Michelle was diagnosed with right hemiplegia (weakness on one side), which we later learned was a type of cerebral palsy. Three months later she started weekly occupational and physical therapy, which we were able to continue for over ten years! Our lives consisted of juggling two older children with Michelle’s therapy appointments, a leg surgery, many doctor visits, MRIs, and multiple ankle-foot orthotics as she grew.
This graphic from the American Heart Association/American Stroke Association is part of a public awareness campaign to inform the public that a person is never too young to have a stroke.
We were fortunate that Michelle’s stroke was diagnosed early so she could start therapy at a young age. It was also a blessing that we lived in the Chicago area with an abundance of medical specialists to help Michelle reach her full potential. Through these specialists, I was able to meet other families who also had a child that had suffered a stroke and start a local support group. Knowing that we weren’t alone was a tremendous benefit for us as parents and it allowed the kids to meet others just like them. We were also able to have some of these medical specialists donate their time to come meet with our parents at our local meetings.
Unfortunately, sometimes good things come to an end. When Michelle was ten we moved to the Augusta, Georgia area. Even though I thought I had done my homework and assembled a team of medical specialists for Michelle, we discovered that medical philosophies vary from state to state. Access to specialists and hospitals is also limited in rural, less metropolitan areas. I wasn’t able to meet as many families as I had in Chicago, so support became an online endeavor. Two years later we moved to Charlotte, North Carolina, and again had to start fresh with new doctors and yet another philosophy about treating children experiencing the effects of a stroke. It was also quite a task to integrate Michelle’s educational needs in each of the new schools.
After moving twice in two years I gave up trying to create local support and decided it was time to create a global community with medically-vetted information and resources. That is how International Alliance for Pediatric Stroke was conceived. I have connected with so many families worldwide and have been able to work with pediatric neurologists and incredible advocacy leaders to improve awareness and education. What I have learned over the years is first, there are thousands of children impacted by stroke worldwide and families are eager to connect. Second, the resources and research for this population are lacking. Third, the diagnosis of stroke in babies and children tends to be delayed. Michelle’s “brain abnormality” being discovered before birth is not typical. Often, the diagnosis of stroke in babies is not diagnosed until months or even years after birth. That means these babies are missing rehabilitation opportunities during that valuable time early in life when their brains are rapidly developing.
Mary Kay and Michelle Ballasiotes promote advocacy and raise awareness of the challenges presented by stroke in early childhood.
The consequences for missing the signs of stroke in children can be even more devastating. Stroke is one of the top ten causes of death in children, and unfortunately, I have heard from parents who have shared their heart-wrenching stories of their children not surviving because the signs and symptoms were initially missed. One of my organization’s recent projects was partnering with the American Heart/American Stroke Association to create fact sheets for infant and childhood stroke. The more education and awareness we can provide on pediatric stroke, the better off these children will be.
Michelle is now 19 years old, and she just completed her first year of college. She drives, swims, was in the marching band, played soccer, took ballet, babysits, pet sits, has had multiple part-time jobs, and has been a public speaker for pediatric stroke since she was nine years old. We didn’t know what our baby’s outcome would be when we first heard those devastating words. We still don’t know what caused her stroke, which is the case with most perinatal strokes in children. It has been a learning process to navigate this unchartered path, but I have met incredible, strong families over the journey, and am hopeful for the future of all children impacted by stroke.
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