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Moyamoya: A Young Stroke Survivor and Her Mom Tackle a Rare Diagnosis

Brandi Conway battled severe headaches and strange neurological symptoms for years. One day, in the summer of 2021, it all came to a head. At 21 years old, she had a stroke.

“I was outside doing yard work when my whole left side started to feel numb and tingly. When I woke up the next day, I couldn’t move it at all,” recalls Conway. “For weeks, we bounced back and forth between emergency rooms and neurologists. We had no idea why my left side was paralyzed. I was terrified.”  

Stroke was the farthest thing from Brandi’s mind, given her age, but a visit to Jefferson helped all the pieces fall into place, says her mother, Beth. Careful consideration of her family history – stroke afflicted her maternal grandmother at a young age – informed Conway’s rare diagnosis: Moyamoya 

“As scary as it was to hear, it was also a relief to finally have an answer,” says Beth.  

What Is Moyamoya?  

Moyamoya, which means “puff of smoke” in Japanese, causes the brain’s arteries to deteriorate, gradually shut down and restrict blood flow, explains neurosurgeon Richard F. Schmidt, MD. The brain tries to compensate by making new blood vessels, and the “puff of smoke” refers to the appearance these blood vessels take on.  

The exact cause of Moyamoya is unknown, but it’s often tied to stroke in adolescents. Generally, stroke in young people is very rare and indicates an underlying condition, says Dr. Schmidt. (Many neurology specialists have observed more cases stroke in young, healthy people since the start of the pandemic, as COVID has shown to be a unique cause.) 

“As the vessels shut down, your brain works hard to compensate by creating new pathways,” says Dr. Schmidt. “It’s like a traffic jam on a highway; the brain tries to build side roads to reroute the blood. However, the new vessels tend to be fragile and prone to bleeding. They grow so slowly that they can’t keep up. This can increase the risk of stroke, severe headaches, seizures and other symptoms.”  

It quickly became clear that Conway needed surgery, but she didn’t realize how urgent it was until she started having more strokes.  

“I spent my summer as a frequent flier with mini-strokes (transient ischemic attacks), which started to affect me emotionally,” admits Conway. “By then, I knew my warning signs: nausea, numbness, and brain fog. People said they noticed me ‘drifting off.’ The anxiety over not knowing how bad the ‘next one’ was going to be took a toll on me.”  

Bypass Surgery for the Brain  

In the fall of 2021, Conway had bypass neurosurgery twice in six weeks – once on each side of her head. Moyamoya targets the internal carotid (IC) artery, which supplies blood throughout the brain, explains Dr. Schmidt. “As the brain creates new vessels, it tries to pull blood from the external carotid (EC) artery, which feeds the face. Surgery, or an IC to EC bypass, creates a direct connection by plugging the EC vessels into the IC vessels, giving the brain a ‘leg up.’”  

“I was terrified leading up to it,” admits Conway. “I had never even had my appendix out, yet here I was having open brain surgery.”  

“I like to say that Brandi is 10 feet tall and bulletproof,” says Beth. “She wants to get up and go, even after brain surgery. She bounced back quickly after the first surgery.”  

Recovering from the second surgery, however, proved to be more difficult due to the extent of trauma she had undergone. And because it takes a significant amount of time for the brain to adjust, the risk of stroke still stands, which is why Conway suffered yet another stroke in December – this time, taking out the use of her right leg.  

Getting Back on Her Feet  

Each stroke hits differently, says Conway. Sometimes, she regains energy and mobility quickly. Other times, it takes months, and she has to rely on a walker. Recently, she had both in-home and outpatient rehabilitation 

When it comes to recovering from stroke, movement and rest are important and time is of the essence. Studies indicate that the most significant progress can be made within the first 2-3 months after stroke onset.  

Luckily, her mom, Beth, can draw from her experiences helping her mother recuperate from stroke. “We take walks, use resistance bands, and do light yoga. Because I still have to work, it’s important that Brandi is strong enough to get around safely and take care of herself.”  

A Strengthened Mother-Daughter Bond  

Between weight gain, nerve-wracking procedures, a loss of independence – and, subsequently, relationships – Conway found herself in a dark place.  

“A year ago, I was active and strong. Now, I know what it’s like to be bed-ridden,” says Conway. “Most people my age can hang out with friends without thinking twice about how they’re going to get around or use the bathroom. I have to make special preparations.” 

Brandi and Beth shared that for many days, they were at odds with each other. “My instinct is to push my child to do their best. I couldn’t just sit back and watch Brandi deteriorate,” says Beth. “It was hard to find that balance between ‘tough love’ mode and empathy for what she was going through.”  

Beth also suggests that the emotional relationship between a caregiver and a loved one recovering is a “two-way street.” “I think there needs to be reciprocity; you have to cooperate, because everything you do affects each other. You have to be honest and tell each other what you need and how you feel.”  

For Conway, being stuck in the house with clinical depression was a dangerous territory. “I was frustrated, angry, and unmotivated. Sometimes, I would yell simply because I needed to vent. I know that even when my mom was exhausted, she still had compassion to help me. I’m so glad she’s always by my side.”  

The Road Ahead  

Brandi follows up with Dr. Schmidt and neurologist Diana L. Tzeng, MD, every few months to stay on top of any abnormal neurological activity. But, in addition to her brain health, it’s also important that her doctors are kept apprised of any other health changes. “Because Moyamoya is so rare and sensitive, we need to know about things that many people would consider seemingly insignificant– like a common cold.”  

Conway hasn’t suffered any strokes since the winter, and the more her brain heals, the less likely it will happen. However, Moyamoya itself can’t be cured, notes Dr. Schmidt, so there’s a possibility that years down the line she could need another bypass.  

Brandi has had to learn to navigate friendships and the “ins and outs” of living as a young stroke survivor. She says one of the most helpful things you can offer a friend recovering from stroke is patience. “Patience and respect over someone’s limits are important, because recovery takes time. I might not ‘keep up’ with you, and that’s ok.”  

[Main photo credit: iStock.com/malerapaso]

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