In 2011, after three days of being unable to eat or drink, Michael Wallace, then 22, underwent an emergency CT scan. “My throat was so tight that a sip of water felt like a huge bite of steak, and it hurt all the way down,” he says. The CT scan revealed blood damage near his brain stem, which regulates such involuntary functions as breathing and swallowing. The bleeding had triggered constriction of Wallace’s esophagus. “The doctor told me that I had this thing on the back of my [brain] and that if I ever got a headache, it would be a medical emergency,” Wallace says. That thing was an arteriovenous malformation, an abnormal web of blood vessels nestled near his right cerebellum.
Arteriovenous Malformations (AVMs) are a tangle of poorly formed arteries and veins that can appear anywhere in the body, though those in the brain present the greatest risks. The condition occurs in less than 1% of the world population, but it is thought to be more prevalent in people of Afro-Caribbean descent. “Most AVMs are problems with the circulatory system that develop soon after conception, either at the embryonic or fetal stage of development or soon after birth,” says Robert Hong, MD, radiation oncology specialist at the Virginia Hospital Center in Arlington, Va. In addition to a tendency to bleed, brain AVMs can lead to a number of additional neurological problems, some of which Wallace mysteriously experienced throughout childhood.
“Starting around four or five years old, I had routine headaches. I just learned to cope with them,” says Wallace, now 26. He also grappled with Attention Deficit Hyperactivity Disorder (ADHD) and a phenomenon known as bruit, in which sufferers can hear blood rushing through obstructed arteries. “I heard the sound of rushing water when I put my right ear down to my pillow. As a kid, I always imagined an army marching in syncopation whenever this happened,” Wallace says. Upon the diagnosis of his AVM, Wallace and his parents were shocked to find that these childhood issues were linked to the brain abnormality. “My mom thought I was too young to have headaches. I drank a lot of juice as a child, and she often thought I was just hungry and needed to eat something.”
On his first visit with a neurosurgeon, Wallace was told that his AVM was in too delicate an area for brain surgery. When he sought a second opinion, Wallace learned from another doctor that surgery risked a 60 percent chance of paralysis, speech impairment, cognitive deficits, and even death. “I thought surgery was my only option, and I was frustrated on so many levels,” Wallace says of the moments after that appointment. As he sobbed hysterically in his car, his mother Anita Taylor encouraged him to “get it all out. She told me that it was okay for me to be upset.” The two drove home that afternoon, Wallace still angry and Taylor determined, telling her son: “We’re not doing that surgery. You’re 22 years old, you’re healthy, and we’re not going to lose you over this.”
Wallace and Taylor sought the insight of additional doctors. “She encouraged me to get a third and fourth opinion. She conducted her own research, and sent me articles every day,” Wallace says of his mother.
Wallace eventually met with Dr. Hong who suggested a less invasive combination treatment of embolization – in which the arteries are hardened, blocking off the abnormal blood vessels – and radiosurgery, which uses radiation to “damage the blood vessel walls [and cause] the AVM to eventually degenerate and close,” Dr. Hong notes. Because Wallace’s AVM was initially too large to treat with radiation, he would undergo six embolization treatments to reduce its size before undergoing radiation therapy. “Often with complicated patients, we will use embolization together with either traditional [brain] surgery or radiosurgery to reduce side effects and death rates,” Dr. Hong says.
“Dr. Hong told me that it was good that I found the AVM when I did because, due to its location and size, it probably would have killed me before 30,” Wallace says. This is the case for many individuals who suffer from AVM. “[Many] of those with AVMs are asymptomatic, and [AVMs] are discovered either by accident, during autopsy, or during [examination] for another problem. AVMs only become symptomatic when the damage reaches a tipping point,” says Dr. Hong noting that most AVM sufferers will experience symptoms in the 20s and 30s. The National Institutes of Health state that one in 10 AVM sufferers who experience brain bleeding will die, while others may experience seizures and other neurological problems. Because of the weakened arteries in Wallace’s brain, his susceptibility to stroke greatly increases with any occurrence of high blood pressure, high cholesterol, or diabetes – all of which run in his family. “I have to stay on top of that,” he says.
When he ended radiation therapy months later, Wallace had one more question for Dr. Hong: “When can I move?” Spurred by his mother to look forward to his future, Wallace applied to graduate school between treatments. “I was slipping into depression, but my mom didn’t lose her patience,” he says. “Very rarely do people get an opportunity to reevaluate what they want out of life, and she reminded me that [my experience] was not for nothing.” Soon after his final treatment, Wallace was given the green light to move to Chicago and begin a graduate program in health communications. “I became interested in health and advocating for patients. African Americans are underrepresented, especially with [neurological conditions like mine], and many of the conditions that affect our community are silent killers.”
In 2013, Wallace earned a Master’s Degree from DePaul University, his GPA among the top 10 percent of its students. He currently works for a top public relations firm, and there is now no sign of his AVM. He credits his recovery to his doctor, supportive friends, and most of all, his mother. “She told me that everything I had been going through prepared me for this change. I wouldn’t have been able to do this without her encouragement.”