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.
On Sunday, November 3, 2013, the Houston Texans played an NFL home game against the Indianapolis Colts, which began relatively uneventfully. However, it became clear that the game would not proceed in a typical manner as millions of viewers observed live footage of Texans head coach Gary Kubiak, 52, collapse on the field while exiting to the locker room at halftime.
The following headlines filled the national media during the week after Kubiak’s event:
I am a vascular neurologist, a neurologist who has completed additional fellowship training in order to specialize in the treatment and prevention of stroke. Since completing my stroke fellowship in 2010, I have had the great privilege of caring for many patients just like Gary Kubiak, adults on the relatively young side who never expect such an event to disrupt their lives. The unfortunate reality is that stroke can happen at any age and can affect anyone.
A concern I felt with the headlines above is the reference to Kubiak’s event as a mini-stroke. This is a term that has become very popular in our American culture, and I hear it all of the time from my patients and their family members. “It was just a slight mini-stroke.” “Aunt Mildred had a mini-stroke while eating dinner.” “He had a touch of the mini-stroke.”
A stroke is a stroke. Period. A stroke results in an injury to the brain. There are two basic types of strokes – ischemic and hemorrhagic. An ischemic stroke occurs when blood cannot reach part of the brain for a prolonged period of time and permanent damage to brain tissue takes place. A hemorrhagic stroke occurs when a blood vessel ruptures and bleeding occurs within the brain. Roughly 80% of strokes are of the ischemic type.
A transient ischemic attack, or TIA, occurs when blood flow is disrupted to the brain and symptoms concerning for stroke occur, but then blood flow is either restored or the brain compensates for the absence of blood flow by seeking and acquiring blood from other sources and no damage to the brain occurs.
During a stroke, brain damage occurs. During a TIA, damage does not occur.
What about a TIA during which damage does occur? What is that called? The answer is – a stroke.
To describe a TIA as a “mini-stroke” misses the difference between the two terms. A TIA is not a stroke because damage is avoided. A stroke is not a TIA because brain damage has occurred. I like to refer to a TIA as an almost-stroke as opposed to a mini-stroke. Throughout the lifetime of this blog, I will continuously refer to TIAs as almost-strokes.
Sometimes patients may refer to a stroke with relatively mild deficits as a “mini-stroke” to distinguish it from a stroke that leaves someone externally and obviously disabled. This is also inaccurate. I have seen patients without a single physical visible deficit from a stroke who are significantly disabled from the cognitive impairment that frequently occurs following a brain injury. I have cared for a patient for the past two years whose only symptom from her “mini-stroke” (the term she used at her first appointment with me) was a left-sided neglect syndrome. This occurs when the brain fails to recognize that the left side of the body exists, even though the left arm and leg may move appropriately and strength on the left side can be left fully intact. She was a successfully employed person prior to her stroke in her 50s, and she has not been able to work since her stroke. She does not factor in columns on the left half of the screen when working with spreadsheets because her brain fails to recognize the left half of her conceptual world. She neglects to brush the left side of her hair and has tooth decay in the left side of her mouth because she does not brush her teeth on that side. She cannot drive because she visually neglects cars that appear in the left half of her world, even though her vision on the left side is intact. Is this really a mini-stroke?
In the initial evaluation of a stroke patient, this graphic is presented in order to calculate a score known as the National Institutes of Health Stroke Scale Score (NIHSS Score). The examiner asks the patient to describe what is seen in the picture as a test of language fluency. However, patients with profound left visual neglect will describe the woman washing dishes at the sink, but will fail to recognize the children in the left half of the scene.
Perhaps the other reason why I prefer to avoid the modifier “mini” in front of a word as significant as “stroke” is because patients tend to downplay the importance of the event. I love caring for patients after TIAs, because the damage has not yet occurred, and we can intervene to prevent a stroke! If a patient has a TIA and refers to it as “mini,” then I find there is less motivation for the person to quit smoking, comply with therapy, eat healthily, or exercise regularly. After all, it was only a mini-stroke.
The other piece to these headlines is the relatively young age of the Texas coach. I definitely see patients at 52 with accelerated atherosclerosis (plaque buildup in the blood vessels, or “hardening of the arteries”), high blood pressure, diabetes, elevated cholesterol levels – some of the more typical stroke risk factors seen in older adults. However, it brings to light that a person is never too young to have a stroke, and more awareness hopefully will result in a call to 911 when stroke symptoms develop as opposed to taking a nap in an effort to sleep it off. Young people frequently do not believe their symptoms might represent a stroke, and choose to rest in hopes that the episode will resolve spontaneously. When they awaken, often there are no interventional options available, and therapy shifts from acute treatment of the current stroke to rehabilitating more long lasting deficits and focusing on how to prevent the next stroke.
During my stroke fellowship at the University of Washington/Harborview Medical Center in Seattle, I experienced my first encounter with stroke in the truly young patient. Samantha (not her actual name) was 16 years old when she developed weakness on the right side of her body and was diagnosed with an ischemic stroke based on her Magnetic Resonance Imaging (MRI) of her brain. Her physician recommended that she start taking aspirin daily, a medicine that assists in “preventing platelets from sticking to plaque in the blood vessel wall and from sticking to one another.” I put this phrase in quotes because I use it often when explaining why healthcare providers use aspirin for the prevention of strokes and heart attacks. While Samantha took her aspirin compliantly, she had a second stroke. Clopidogrel (trade name: Plavix) was added to her daily medication regimen. Take what I said aspirin does, and for most people, the effect is essentially more robust with clopidogrel.
Biological warfare had essentially been declared on Samantha’s platelets. She was also started on a statin, a class of medications to lower cholesterol and to protect blood vessels from accumulating plaque, or to protect against “hardening of the arteries.” Surely she was not going to have another stroke. But she did.
This is when I had the privilege of meeting Samantha. My stroke fellowship had just begun, and in my first weeks I encountered this young girl and her frightened mother. I did not know where to start, and I remembered words from mentors throughout medical school and my neurology residency training: Ninety percent of the relevant information for solving a medical mystery is in the history, or what the patient tells us. The rest of it – lab tests, radiology studies, you name it – confirms or denies a healthcare provider’s assessment of what the patient has described. Essentially, if the patient is describing symptoms of a stroke – weakness on one side of the body, drooping of the face, slurred speech – then my tests are to confirm or deny my suspicion. This is why taking the time to listen to patients is critical in providing care.
When Samantha recounted the stories of each stroke, there seemed to be a strong headache element. Headaches can occur with strokes, but many strokes are painless, and it seemed important that she would remember headaches while experiencing stroke symptoms. Not infrequently patients with strokes do not immediately recall a headache, because they are so alarmed by the weakness, numbness, or slurred speech that they forget to tell their physicians about the headache.
Samantha began her tale of her first stroke with details about a headache. My fellowship mentor and I decided that her strokes probably did not stem from platelets, blood clots, or plaque accumulation in her blood vessels. She was 16 years old, so how much plaque could she possibly have accumulated at that point in her young life? We determined that her strokes may have resulted from blood vessels constricting, or spasm/squeezing, as part of a newly described syndrome called Reversible Cerebrovascular Vasoconstriction Syndrome. In order to formally make the diagnosis a patient should undergo imaging of the blood vessels during an episode to demonstrate narrowing and constricting, and then repeat this imaging later to show that the constriction was reversible. We did not have this opportunity with Samantha as the episode was completed by the time we evaluated her, but we did decide to empirically start her on verapamil, a medication that can assist blood vessels with relaxation. The thought is that it can help to prevent constriction of the arteries.
Magnetic Resonance Imaging (MRI) of the brain of a young stroke patient with Reversible Cerebrovascular Vasoconstriction Syndrome. The bright areas are regions where blood flow has been recently disrupted as a result of arteries constricting.
Samantha did not have another stroke. We stopped her statin for cholesterol control, and we stopped her clopidogrel as antiplatelet therapy. Off of these two medications, she did not start having strokes again. I continued seeing her in the stroke clinic throughout my fellowship year, and she did very well in her recovery. I recently reconnected with her, and since that time she has had a healthy baby without stroke complicating her pregnancy.
The valuable lesson I learned from Samantha is that the young stroke patient is an entity of its own. Because many strokes in the general population stem from plaque accumulation and platelets adhering to it, stroke patients end up on medications that prevent platelets from functioning and on statins to prevent plaque buildup. In many cases, this is a correct, evidence-based course of action. But a 16 year old is not a typical stroke patient, and the origin of her stroke was not going to be typical either.
When a young celebrity has a stroke, it makes the national news, and there is dialogue for a few days about how surprising it is that someone so young could have a stroke: Bret Michaels, 47 at the time of his stroke; Frankie Muniz, 26 at the time of his “mini-stroke” (TIA). While gone from recent memory, Curly Howard of The Three Stooges fame died from complications of a stroke at the age of 48. Jean-Dominique Bauby, the editor of the French magazine Elle, sustained a severe stroke at the age of 43, resulting in locked-in syndrome, a phenomenon I will examine in a future blog post. Bauby “dictated” his memoir, The Diving Bell and the Butterfly, by blinking his left eye when his associate, Claude Mendibil, would speak the desired character after verbally scanning through the alphabet, starting with letters most frequently used in the French language for more optimal efficiency.
In my own practice, it seems like every week I evaluate someone who had sustained a stroke under the age of 50. The cumulative sum of patients in this population increases with each passing month, and in 2011, after practicing for one year following my stroke fellowship, I noticed that most of the young stroke patients seemed to experience similar issues that created significant stress in their lives. To start, young stroke patients spoke of feeling alone in their struggles because the people they knew with strokes were older, and thus they found it difficult to relate to the experiences of other stroke patients. These patients found their strokes to be financially stressful, as they typically were working full time prior to their events, and had not yet invested enough for retirement. One of the challenging questions frequently was whether to try to return to work for badly needed income despite deficits in functioning, or whether to apply for disability, knowing the amount would be substantially less than these patients were used to earning. Some of these patients had just become parents within the past several years, and others found that their relationships with their spouses had changed after stroke. One complaint I hear recurrently is the frustration young stroke patients feel when they are told: “You don’t look like you’ve had a stroke.” They feel an expectation to perform at their pre-stroke levels and to return to normalcy, but many feel forever changed in some way. It became clear that these patients needed a support group, and we launched the Young Stroke Survivor Support Group in May (Stroke Awareness Month) 2012 at our neurology clinic in Charlotte, North Carolina.
There is interest in stroke and how it can affect younger people, but there are few resources for this patient group. The Stroke Blog will tell the tales, with the blessings of the patients, of some of the young individuals affected by stroke who have entrusted me with their care. When a stroke appears in the mainstream media, I will attempt to break it down in an understandable way for readers here. While I probably will not be able to answer all of the questions that are sent my way, I will select questions that yield the opportunity for education and dialogue with the hope that greater understanding of stroke will come for my readers and will write about suggested topics. I will be unable to offer specific medical advice through the blog, though, and also kindly ask that if someone is experiencing concerning symptoms (weakness, numbness, visual loss, headaches, trouble speaking, etc.) that 911 be called as opposed to submitting a blog comment!
It is worth noting that approximately 25-30% of strokes, even after an extensive diagnostic workup, remain “cryptogenic” – that is, a flowery medical term for “we don’t know why this happened.” In these cases, I remain true to the principle that what the patient tells the physician is ninety percent of the answer. Then, I make the best decision I feel I can make, knowing that some things remain unknown, and regardless of what we may desire, tomorrow is not guaranteed to any of us. Young stroke patients have taught me more than I can possibly recount about humility, despair that transitions to optimism and hope, enduring love between partners, strength, determination, and how to keep going.
I sincerely hope that you will find The Stroke Blog useful, and I look forward to the journey.
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