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.
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.
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?
The 2016 Chapman University Survey of American Fears gave me pause for reflection. Leading the list of what strikes fear into the more than 1,500 Americans surveyed was “corrupt government officials” (60.6% of respondents), followed by terrorist attacks (41%). Much farther down the list, only 20.3% reported “becoming seriously ill” as a cause for concern.
As a physician who spends her days caring for patients with strokes, or “brain attacks,” I wondered how many strokes we could avoid entirely if people feared brain attacks as much as they fear terrorist attacks. According to the Centers for Disease Control, more than 795,000 strokes occur in the United States each year. An individual’s lifetime odds of dying from a stroke are approximately 1 in 31, and stroke remains the fifth overall leading cause of death in our country. What are the lifetime odds of dying at the hands of a foreign born terrorist? According to the National Safety Council, only around 1 in 45,808.
A stroke is a permanent brain injury, resulting either from a blockage preventing blood from reaching part of the brain (ischemic stroke), or from bleeding occurring in the brain (hemorrhagic stroke). While rehabilitation can assist with improving a stroke survivor’s ability to function, the injury to the brain is not reversible. Skin cells may regenerate within a wound, but cells in the brain do not. Common stroke symptoms include, but are not limited to, weakness on one side of the body, numbness on one side, sudden visual loss, slurred speech, drooping on one side of the face, and/or difficulty producing coherent words/sentences.
May is National Stroke Awareness Month, a time during which amplified efforts take place to raise public recognition of the disabling and fatal impact that stroke brings. The good news is that most strokes are preventable, but this requires effort. Just because a patient feels well does not mean that high blood pressure should be ignored. Cigarette smoking is harmful to the brain and its blood supply, but quitting is tough and requires resolve. Diabetic patients with high blood sugar readings should take these seriously and work with their healthcare providers to bring these under control. High cholesterol measurements also warrant discussion between patients and providers.
There are three major educational points I wish to make during National Stroke Awareness Month, in hopes that we can join together to prevent strokes and the horrible aftermath they produce.
1.Atrial fibrillation is a type of irregular heart rhythm that can dramatically increase the risk for stroke. There are now a number of medications that can substantially lower the risk of stroke in these patients. If you have atrial fibrillation, it is critical that you discuss with your healthcare provider whether he or she recommends starting one of these medications.
2.Obstructive sleep apnea is another condition that places patients at higher risk for stroke, as well as many other disease processes that can also make a stroke more likely to occur. If you have obstructive sleep apnea, please work with your healthcare provider to find an effective way to control it. Your brain will appreciate it.
3.Stroke is not just a disease of the elderly. I frequently see patients in their 20s, 30s, and 40s presenting to the hospital with strokes. As frightening as it may seem, stroke also strikes during childhood. Tissue plasminogen activator (t-PA) is a medication that can help to dissolve blood clots when a stroke begins. Multiple studies have demonstrated that treatment with t-PA increases a patient’s chances of living independently three months after a stroke compared with those who do not receive t-PA. However, t-PA is only beneficial within the first 3 to 4.5 hours after a stroke begins, and every minute that passes decreases a patient’s chance of reaching that independent outcome. Regardless of age, when stroke symptoms start, the right call to make is 911. A person is never too young to have a stroke.
I remain much more fearful of having a stroke than I do of losing my life in a terrorist attack. Yes, national security is an important issue; however, as we battle threats that are much more likely to kill and disable Americans than terrorist attacks, let us place our fears where fear is warranted, and channel this energy into action.
One of the central missions of The Stroke Blog since it went live in October 2014 has been to provide information to those who have survived a stroke or strokes that occurred at relatively young ages. The very first post, “Deconstructing the Mini-Stroke,” recognized that while there may be symptoms more-or-less universal to some stroke types regardless of a person’s age, that the young stroke population tends to struggle differently through what I call their stroke aftermath.
One problem in the young stroke population is that, while we have a drug (IV t-PA) that can help to minimize the long-term aftermath of ischemic stroke when administered within three to four-and-a-half hours of stroke onset, many young patients do not receive it. A number of my young patients have told me that when their symptoms began, they decided to take a nap or wait it out, either because stroke was not on their radar, or because even if it was, they believed stroke to be a disease of the elderly. Those who do take their symptoms seriously and seek emergent medical attention can be misdiagnosed, because healthcare providers may doubt that a stroke can occur at young ages. For hemorrhagic stroke, early medical attention can result in better outcomes for different reasons. Perhaps an aneurysm has ruptured requiring urgent surgical repair, or a hemorrhagic stroke patient requires emergent blood pressure control. When stroke symptoms develop, regardless of a person’s age, emergent medical attention should be sought. In the United States, this means calling 911 (not driving oneself to the hospital).
According to the Centers for Disease Control, in 2009, almost one-third of stroke hospital admissions in the U.S. were for patients under the age of 65. The Center for Health Statistics estimates that $15.5 billion was lost in productivity in the U.S. in 2008 as a result of stroke patients having to leave the workforce. When stroke strikes a young adult, it costs these individuals personally on many fronts, but it also takes its financial toll at a national level.
This is a public health problem. I want young people to know that when sudden paralysis develops in an arm or a leg, the right thing to do is to get to a hospital as quickly as possible in hopes that t-PA treatment may be a possibility. For severe strokes resulting in large artery occlusions, or “blockages,” we now have very compelling clinical trial data telling us that using a catheter to remove the blood clot is very beneficial in some patients, but only when the stroke is treated early. A delay of even a few hours may make the difference between being dependent on others for care, or returning to independence.
I challenge you to raise awareness about this problem. I challenge you to find a red pair of shoes in your closet, or purchase an inexpensive pair
Wearing my red shoes at the International Stroke Conference about 20 minutes before this blog post! #redshoes4youngstroke
of red shoes, or if this is too much of a financial burden, to spray-paint an old pair of shoes red. Wear them proudly. The more they stand out, the better. If you are asked about them, use the opportunity to share with the questioner that a person is never too young to have a stroke. If you have a personal story to share, I challenge you to be bold enough to share it. If you are hesitant about sharing it, then communicate to others that stroke is not a disease only affecting the elderly.
Take a picture of your feet in these shoes, and post it to social media – to Facebook, Twitter, whatever. Include the hashtag #redshoes4youngstroke when you post it. Tag others in your posts whom you feel will care about this cause and participate. If you have the financial means to do so, consider making a donation to the American Stroke Association, National Stroke Association, Young Stroke, or another not-for-profit organization you feel has been supportive of the young stroke population. I will watch for interesting red shoe pictures with the #redshoes4youngstroke hashtag to come along, and will repost some of them with permission on The Stroke Blog.
Moments before hitting “publish” for this post – hoping to bring more awareness around the plight of young stroke patients.
I’ll start. While purchasing a pair of boots for the winter online in January of this year, amazon.com recommended these shoes to me. I thought this was bizarre, as they looked nothing like the boots I had just purchased, but then it seemed almost fated. Somehow amazon.com knew me better than I knew myself, and realized that I would want these there’s-no-place-like-home shoes. Indeed I did, because I instantly decided to call them my “stroke awareness shoes.”
I wore them a few times earlier this month while caring for patients in the hospital to see how people would react, and I received multiple comments each day from patient family members, people in elevators, other parents when I picked my son up from basketball practice. I practiced giving my 20 second spiel about a person never being too young to have a stroke, and it resulted in a number of engaging conversations. Some people even said they would join me in wearing red shoes to raise stroke awareness!
I also want to thank the neurology residents at Duke University, who are not only fantastic physicians, but who have been my sounding board as I have contemplated this. They have been full of great ideas!
I am currently attending the American Heart Association/American Stroke Association’s International Stroke Conference, and am wearing my red shoes. I am encouraged at the response I have gotten over the course of the morning, and feel certain this can extend beyond those who care for stroke patients.
With greater awareness comes greater funding for research, greater compassion for the plight of a group of survivors, and greater understanding of an issue that exists in our society. Let’s wear our red shoes!
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