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The Diagnosis I Never Expected: A Young Stroke Survivor’s Story

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.

 

Cerebellar Stroke: Five Things Healthcare Providers Should Know

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:

  1. 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.
  2. 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.
  3. 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.
  4. 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.
  5. 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.

New book for patients with carotid and vertebral artery dissection is now available

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.

This morning, after a year and a half of writing and revising, Carotid and Vertebral Artery Dissection: A Guide for Patients and Their Loved Ones was published!

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.

When A Baby Has A Stroke: A Personal Story From the Executive Director of International Alliance for Pediatric Stroke

“Your baby has a brain abnormality.”

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.

Apathy around National Stroke Awareness Month is real

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.

Following my post on May 18, 2017, Call To Action: Americans Fear Terrorism More Than What Is Likely To Kill Them, I decided to submit the text to The State in hopes of reaching a broad audience in a place that lies in the heart of the “Stroke Belt.” Over half of hospital admissions for stroke in South Carolina involve patients under the age of 65. It seemed an appropriate medium for providing education about stroke during National Stroke Awareness Month.

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…”

“Made-up months”?

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?

Awareness.

Call To Action: Americans Fear Terrorism More Than What Is Likely To Kill Them

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.

Bill Paxton: Stroke Following Heart Surgery

Bill Paxton was one of those versatile actors who had always just been around for us. When his unexpected death at 61 was recently announced, I heard reactions such as: “Oh, I loved him in True Lies” and “He was in Apollo 13, right?” My immediate thoughts turned to Titanic (yes, I’m a girl – I saw it in the theater three times), and to the quirky explorer played by Paxton, attempting to recover the remains of the sunken vessel while understanding the stories of those who had perished. He has existed in my memory as a youthful individual, perhaps because he is frozen in time in that role for me. Film does that. It prevents us from believing that aging occurs, and yet it still does behind the scenes.

Bill Paxton, exploring the Titanic in the 1997 film

According to mainstream media sources, Paxton had rheumatic heart disease, and underwent surgical replacement of one of his heart valves on February 14, 2017. First lesson in this story: the reason for treating strep infections of the throat (strep pharyngitis) with antibiotics is not necessarily only to prevent the infection from worsening, but more so to eradicate the infection so that a more serious problem involving the immune system does not develop later. Following strep infections, the immune system can mount an inflammatory response, which can then result in an immune attack on the valves of the heart. The inflammatory state is known as rheumatic fever, and the valve injury is known as rheumatic heart disease. Eventually, many patients end up having surgery to replace defective heart valves years after their initial encounter with rheumatic heart disease.

Following his heart surgery, Paxton had a stroke. In one study published in December 2016, after data from 21,821 patients having undergone mitral valve surgery was analyzed, it was found that 3.89% of them experienced strokes soon after the procedure. The risk seems to be slightly lower in those undergoing aortic valve replacement. The truth is, however, that general anesthesia alone carries a risk of stroke, even when the heart is not the target for surgery. Blood pressure decreases under anesthesia, which can result in difficulties getting blood flow through tight areas where plaque build up may be present. Short-lived irregular heart rhythms that can generate blood clots, such as atrial fibrillation, are not uncommon during or following surgery. Procedures involving catheters (wires inserted into blood vessels) can cause stroke if plaque is “knocked loose” by the wire, or if clot forms at the tip of the wire.

Paxton’s death brings further awareness that, while we attempt to keep procedural risks as low as possible, surgery does carry the risk of stroke. The desire is for the potential benefit of surgery to outweigh the risks involved, or else the surgery should not take place. Risk assessment is a game of odds, and hoping that patients will land on the more favorable side of the equation.

Rest in peace, Bill.

Young adults with acute ischemic stroke are more likely to receive IV t-PA than their older counterparts, and have lower rates of bleeding

I am finally able to share the results of the largest study to date evaluating treatment of young adults in the first hours after the onset of ischemic stroke! First, though, I would like to provide some background for you.

When I left practice in the community hospital setting in order to start at Duke University in June 2015, it was in part to have the resources to study stroke management in younger adults. I had questions. Lots of question.

Questions like:

  • Are young adults receiving IV t-PA (the “clot-busting” drug for early ischemic stroke) with the same frequency as their older counterparts, or are they less likely to receive it because they are misdiagnosed?
  • Stroke patients who are presented with the option of receiving IV t-PA early after a stroke are often told there is a 6% risk of bleeding from the drug, but is this accurate for younger adults? Or is the bleeding risk lower in younger, healthier individuals having strokes?
  • Are there delays in treating younger adults because of a reluctance to treat, or delays in recognition that strokes are occurring?

In September 2015, I submitted a research proposal to the American Heart Association/American Stroke Association as part of an application for the “Young Investigator Award,” which would allow access to the largest stroke database in the United States, as well as funding for statistical analysis. I learned in January 2016 that the AHA/ASA agreed that these were questions worth answering, because the proposal was selected for the award. Over the course of the spring and summer of 2016 my colleagues and I worked on this project and getting the abstract ready for submission to the International Stroke Conference, and yesterday, the results were finally presented!

Poster summarizing some of the results from the study described in the blog post. Details will be published in a forthcoming journal article.

Overall, data on the strokes sustained by over 30,000 patients between the ages of 18 and 40 was analyzed, and compared with stroke data on 1.2 million strokes in patients over age 40. 12.5% of the younger patients received IV t-PA, versus 8.8% of patients over 40. Of patients who arrived at the hospital within 3.5 hours (more likely to be eligible for IV t-PA because they made it to the hospital within the time window to receive the drug), 68.7% of younger patients received t-PA, versus 63.3% of patients over 40.

The part of the study that excited me the most was the low rate of bleeding complications in the younger adult stroke patients – only 1.7% had symptomatic bleeding in the brain within 36 hours of t-PA, versus 4.5% of those over 40. Regarding severe bleeding elsewhere in the body, only 0.3% of younger patients experienced this problem, compared with 1.0% of those 40 and older. The reason this excites me is because we as neurologists finally know what the real bleeding complication rate is in the young adult population from t-PA, and instead of giving these young adults numbers that were generated from the more typical, older stroke population, we can say with good data to back us: “Your risk of bleeding from this drug is only 2%, and the likelihood of benefit far outweighs the potential risk.” Young people in the midst of a stroke deserve accurate data to consider when making the decision about whether to accept t-PA as a treatment.

We found significant delays both in getting the head CT scan done after arrival and in starting t-PA in the younger stroke patients. Adults over 40 who receive t-PA are more likely to receive it less than 60 minutes after arrival to the hospital, and are more likely to have their head CT scan done less than 25 minutes after arrival.

There is a lot of work to do in treating all stroke patients more rapidly, and we have to find ways to treat more patients overall when they present to the hospital in the midst of stroke. This is a step forward in understanding how younger adults with stroke are treated, and in comprehending the real complication rate, as opposed to giving them information that applies to the older population.

 

(Reference: Dodds JA, Xiao Y, Sheng S, Fonarow GC, Matsouaka R, Bhatti DL, Peterson E, Schwamm LH, Smith EE. Intravenous Recombinant Tissue-Type Plasminogen Activator Use in Young Adults with Acute Ischemic Stroke. AHA/ASA International Stroke Conference, Houston, TX – 23 February 2017.)

Carrie Fisher and Debbie Reynolds: Can Stress Cause Stroke?

The year 2016 ended with hemorrhagic stroke in the mainstream news around the world. Most of you have already heard the story of Carrie Fisher and Debbie Reynolds at this point – a daughter’s unexpected death followed by the surprise of her mother’s passing within a day.

Patients frequently ask me if stress can cause stroke, and many younger adults report that at the time they sustained their strokes, they were under a great deal of either professional or personal (or both) stress. When I was training to become a physician, I asked this question, and was told that there was no definitive evidence linking stress to stroke. Over the years, though, I question this for a number of reasons.

First of all, studying stress is more challenging than studying diabetes or high cholesterol, where there are reliable lab values that can be tracked. Some studies follow levels of cortisol, a hormone released by the adrenal glands, but cortisol levels do not necessarily reflect the degree of stress that patients subjectively report experiencing. Also, an individual may report severe levels of stress on a questionnaire in response to what may seem to be a relatively benign situation, while another could claim to have “mild” stress during a period of great hardship. Patients can underreport their levels of stress too.

Okay, so if we can’t easily study stress, what does that mean in terms of whether it is associated with stroke risk? It is probably worth deciphering the downstream effects of stress that can be measured to answer this question.

I tell patients that stress can send blood pressure surging, and high blood pressure is a risk factor for stroke. With the release of cortisol during stressful periods, this can result in an increase in blood sugar levels (glucose), and if prolonged could theoretically lead to the development of insulin resistance and/or diabetes. Stress causes sleep disruption, and insomnia can place patients at risk for health complications. So does stress cause stroke? I would say that if an ongoing level of stress that continuously leads to stroke risk factors is present, then perhaps it can.

Back to Debbie Reynolds now. There is stress, and then there is distress. To the best of my knowledge, she was not living with chronic stress, but endured a sudden, unexpected, severe form of emotional distress with the news of her daughter’s unanticipated death. I was not surprised when her death certificate revealed her cause of death as “intracerebral hemorrhage” (bleeding within the brain). I have met patients who have collapsed into unconsciousness with these hemorrhages when receiving intensely upsetting news, such as the unexpected death of a loved one, or notification of eviction from their homes. I suspect there is a sudden increase in catecholamine levels (stress hormones released as part of our fight-or-flight responses), causing a spike in blood pressure, and the rupture of a small artery in the brain under such pressure. It is difficult to study hormonally what is occurring during a time of such intense emotional distress just prior to an intracerebral hemorrhage though.

 

Pondering “Telestroke” While Covering A Telestroke Service

This week is one of my on-call weeks for Duke University’s telestroke network. When I first came to Duke just over one year ago, I was very familiar with the telestroke concept and had attended a number of meetings discussing what went into developing a telestroke network, but with my transition to a new hospital system, I then had the opportunity to start treating patients virtually who might otherwise not have access to a neurologist when this access was the most time-sensitive – during an acute stroke.

The word “telestroke” may be a bit misleading at first, because the evaluation is actually performed via video stream rather than by telephone (although a phone call usually starts the process). A telestroke network is typically comprised of a central hub hospital (tertiary care center with specialists available), and what are known as its spoke hospitals. The neurologist performing telestroke consultations is frequently employed by the hub hospital (in my example, this would be Duke University Medical Center), and the spokes call for telestroke assistance from the neurologist when a patient is acutely experiencing signs and symptoms that may are concerning for stroke at that spoke hospital. There are also non-hospital companies that provide telestroke consultation services, and neurologists are hired by the company to cover the acute stroke needs of its customer hospitals, rather than the neurologist specifically being employed by a hub hospital.

This graphic is how I appear when "beamed in" on the robot. I can examine a stroke patient from many miles away, and can even "walk" around the room, or move into the hallway to find the emergency medicine provider to have a discussion about the plan.

This is how I appear when “beamed in” on a telestroke robot. I can examine a stroke patient from many miles away, and can even “walk” around the room, or move into the hallway to find the emergency medicine provider to have a discussion about the plan.

Typically, telestroke works something like this in my world. I receive a page from one of our hospital spoke sites, and it is expected that I call the hospital that is paging me in less than five minutes. I then speak by phone with (the majority of the time) a physician, physician assistant, or nurse practitioner in the emergency department at that hospital about a patient who is suspected of having a stroke. We discuss when the patient was last known to be without the stroke symptoms (“last known well time”), as this is an important factor in deciding whether the patient may be eligible for IV t-PA, the “clot-busting” medication that can be given within the first three to four and a half hours after stroke symptoms begin. We also discuss whether the patient is taking any medications, the blood pressure, and many other factors that may influence our decision to give or to withhold t-PA. I then am able to look at the patient’s head CT scan on my computer screen. It is necessary to perform the CT scan in order to rule out bleeding in the brain, since 15-20% of strokes are hemorrhagic. We don’t want to give a medicine like t-PA to someone who is bleeding because it could worsen the bleeding without benefitting the patient. Then, I get to “beam in” to the robot or computer in the patient’s room to start examining the patient from miles away.

Telestroke is a revolutionary concept. A game-changer. Rural areas may not have neurologists in the area to see patients at hospitals, or may not have the capacity to have them available 24 hours a day. This places a neurologist at the bedside, and in a situation where “time is brain,” we are able to not only treat more patients with t-PA, but can also partner with emergency medicine providers to give the drug as soon as possible. Clinical trials have shown us that with earlier administration of t-PA comes a greater likelihood of being independent three months after an ischemic stroke. The odds of returning to independence are greater when t-PA is given 90 minutes after a stroke starts than when given three hours after a stroke starts.

We are also able to identify patients who may be candidates for mechanical thrombectomy, a procedure in which a catheter can be inserted at the groin and threaded to the site of the clot in the brain, with physical removal of the clot. If a patient is believed to benefit from this procedure, we can work with the emergency department at the spoke hospital on transferring the patient as quickly as possible to a hospital where this procedure can be performed.

Sometimes I examine a patient expecting to see a stroke, and after a few minutes of evaluating the patient realize that the patient is in the midst of a seizure. Seizures can mimic strokes. So can migraines. So can a lot of things. It’s another way that bedside neurologist collaboration with emergency medicine providers can be beneficial.

Other times, a patient may be having a stroke, but is not a candidate for t-PA or for a mechanical thrombectomy. Perhaps the patient’s stroke began a day ago and changes consistent with stroke are already evident on the CT scan. Perhaps the patient had a history of a brain hemorrhage in the past and the risk with t-PA is considered too great. During those instances, at least a neurologist has evaluated the patient, and everyone can move on with managing the patient’s care without wondering if something more could have been done had a neurologist been at the hospital.

There are challenges that accompany telestroke evaluations for physicians. A physician must be licensed in each state in which he or she is providing telestroke consultation. In my case, our hospitals are only in two states. In other situations, though, I know physicians who have to keep 10 or 15 state licenses current, which have to be renewed every 1-2 years. Since medical licensing is performed at the state level, there is not a federal license a physician can acquire allowing him or her to practice in all 50 states. Physicians also have to apply for “hospital privileges” at each hospital in which they are performing telestroke consultations, and this can be very time-consuming to reapply every 1-2 years.

There is also the challenge of not being able to physically touch the patient. For example, testing for sensation differences between the right and left sides has to be performed by someone physically present. However, I have found great partnerships with nurses and other physicians who are at the patient’s bedside, and this fosters a spirit of teamwork.

Telestroke is only one application of “telemedicine,” or providing medical care via video conferencing at the bedside. Telepsychiatry places psychiatry providers with patients who need them, and telecritical care allow providers trained in critical care medicine to weigh in on critically ill patients in areas without these experts available. These are only a few of the many possible applications of telemedicine.

While the robots are pretty cool, hospitals who choose not to purchase them or who cannot afford to purchase them can purchase a computer on a cart that can be wheeled into the patient’s room, and the telestroke consultation still goes smoothly. Some companies, such as Vigilias, are working with hospitals to bring telemedicine to rural areas and keep costs at a minimum by using a full-size SmartPhone-based system. The technology continues to develop at an impressive speed, and many innovative people are working towards more efficient ways to provide medical care to more people.

Allison Pataki shares young caregiver’s viewpoint after husband’s stroke at 30

Today, Allison Pataki published a moving New York Times blog post about her husband’s stroke at age 30. Pregnant with their first child at the time of the event, she describes continuing to work productively, preparing for a newborn, and instantaneously becoming her husband’s caregiver following this unexpected circumstance that life threw their way. Click here to read her tale.

Clinical trial fails to show ticagrelor (Brilinta) superiority to aspirin in stroke prevention

The SOCRATES clinical trial has concluded with summary results having been released to the public. More detailed results will be presented at the European Stroke Organisation Conference in Barcelona, Spain next week.

Ticagrelor (Brilinta) carries a retail price in the United States of over $300/month. It was not found to be statistically more effective in preventing stroke in the SOCRATES study when compared with aspirin.

Ticagrelor (Brilinta) carries a retail price in the United States of over $300/month. It was not found to be statistically more effective in preventing stroke in the SOCRATES study when compared with aspirin. Source: GoodRx.com for price comparisons at retail pharmacies.

The trial randomized patients with transient ischemic attacks (TIA) considered to be high risk for stroke and patients with “mild” strokes to take either ticagrelor (Brilinta), a medication that impairs platelet function currently in use the prevention of heart attacks in patients with coronary artery disease or with coronary stents in place, or aspirin. Ticagrelor was taken at a dose of 90mg twice daily, and aspirin was taken at a dose of 100mg daily (plus placebo for the second dose – patients were blinded to which drug they were taking). Patients had to enter the trial within 24 hours of their TIA or stroke symptoms beginning. The endpoints were the amount of time until a recurrent stroke, a heart attack, or death. While the patients in the ticagrelor group are being reported as having fared slightly better than those in the aspirin group, the results were not statistically significant. This means that there is no significant benefit in the primary prevention of stroke after a TIA or in the secondary prevention of stroke following a mild stroke that ticagrelor carries over aspirin.

Aspirin for sale online in an assortment of packages from various producers. Image Source: GoodRx.com

Aspirin for sale online in an assortment of packages from various producers. Image Source: GoodRx.com

What does this mean? If you refer to the image to the left, you will see a big part of what it means

– about $300-plus per month in savings for some patients if they now opt for aspirin over a patented drug for which there is no generic equivalent.

It also raises the question about whether pharmaceutical companies will fund clinical trials that cost millions of dollars to run and carry to completion in order to obtain an additional indication for a drug’s use. It’s a gamble. If companies don’t fund trials to demonstrate efficacy, then insurers are less likely to cover drugs for patients, and patients are more likely to opt for a less expensive option, if available. If they fund trials and the drug being tested is not effective, or is not superior to a less expensive option that already widely exists, then not only is it millions down the drain, but negative press about the company and the drug. However, if the drug is shown to be more effective than the cheaper, more widely available option, then the return on investment could be huge.

Personally, I was shocked. Ticagrelor carries a reputation of being a potent antiplatelet medication, and many of us who treat patients with stroke or heart disease felt that this was a softball sort of trial. Of course the ticagrelor was going to win solidly – because it was being compared only to a substance that has been available over-the-counter for decades, a drug that went generic in the 1930s and whose history dates back over 2,000 years as a substance produced by the willow tree. Could it really be that something as simple and low cost as aspirin could rival an expensive, patented, relatively new prescription drug? According to SOCRATES, this may well be the case.

There were limitations to SOCRATES. It’s always difficult to incorporate every possible scenario into a clinical trial, especially in a disease like stroke where each one is different. This did not test whether the combination of aspirin and ticagrelor was more effective than aspirin alone. It also did not compare ticagrelor to other antiplatelet drugs that are generic, such as clopidogrel (Plavix). Medicine is still an art, because above all, it’s important to treat each individual patient with the information available while applying good judgment.