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.
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.
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.
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.