For this week post, I decided to take another break from my last year of Master’s studies and I will write about the Moyamoya disease. I came across this disease by watching a Netflix’s series called “Explained” (very interesting and educative, they talk about the most different topics and if you have some time to spare, have a look at it and enjoy!), where they were “explaining” music: when a sound become music, why us, humans, are able to master musicality and what rhythm, octaves and songs and dances are. However, among these topics, they presented the case of Jennifer Lee, aka TOKiMONSTA, an American record producer and DJ, that got affected by Moyamoya disease and temporarily lost speaking and musical abilities.
“All music just sounded like noise,” TOKiMONSTA (see one of her pictures below) said during an interview. “I remember being like, ‘Ooh, this is weird! This is metallic, harsh nonsense to me.’”
Around 2007, she started getting migraine and, not knowing if it could have been a tumor, she did an MRI (Magnetic Resonance Imaging, to form pictures of the anatomy and the physiological processes of her brain) and an MRA (Magnetic Resonance Angiography, to show the vascularity of her brain). Everything was fine, apart from a little area where the vascularity shrunk 60 to 70 percent. In the beginning they thought it was an anomaly of the scan and, since she did not have any other symptoms of Moyamoya, the doctors just decided to keep an on it.
Moyamoya disease is a rare progressive vascular disorder in which the arteries that send blood to the brain (including the carotid arteries) are blocked or become narrowed. The name “moyamoya” means “puff of smoke” in Japanese and describes the look of the tangle of tiny vessels formed to compensate for the blockage. If left untreated, it is fatal. Its incidence is higher in Asian countries than in Europe or North America and the disease primarily affects children but it can also occur in adults. The first symptom of Moyamoya disease is often stroke or recurrent transient ischemic attacks (TIA, commonly referred to as “mini-strokes”), frequently accompanied by muscular weakness or paralysis affecting one side of the body. Other symptoms may include: headaches, seizures, disturbed consciousness, involuntary movements, vision problems or cognitive and/or sensory impairment.
In late 2015, she had an episode where she could not feel her foot anymore. That is what rang the bell and reminded her of her condition. She took another MRA and the doctors saw that her vascularity shrunk to 90 percent, obstructing the blood flow in two different areas: she had Moyamoya disease. Without any treatment, most people do not live past 40 years old. She had to get treatment right away and the only way to treat Moyamoya disease is via brain surgery. Since the occlusions were on both sides of her brain, she had two brain surgeries a week apart. The doctors took the arteries that fed her scalp and laid them over the surface of the brain: eventually, that branch of artery that is laid on top of the brain starts going down, like the roots of a plant, and it starts feeding the brain from the top, rather than the bottom, as it usually does. Clearly, there are risks, such as strokes and aneurisms, or the possibility that the procedure does not work.
Luckily, she made it through the surgery and she then tried to acclimate herself to her life again. In the beginning she could not talk or understand speech: she reported that she could still think thoughts, but all the words she knew were gone. As time progressed, her language got better, but the most difficult thing was trying to work on her music. She could not understand “if this is a good sound or a bad sound. I don’t know if I’m playing a melody.” She decided it was time to stop for a while and gave herself some time to recuperate and, in the meanwhile, she hoped that her ability to create music would come back.
And it came back in the end. The first successful she wrote after this though period of her life was “I Wish I Could Be” [featured on Lune Rouge] and her success continued. As Dr. Steinberg (chair of neurosurgery and director of the Stanford Moyamoya Center) said, “Do not to freak out, if you wake up and can not move your tongue or if you try to text and the message is gibberish. Or if, having spent your lives turning to and creating music when you needed comfort, you flip on a record and it sounds like … noise.” The brain needs to adjust to the new blood flow and besides, his fingers and scalpels were just inside the control center. Auditory malfunctions and lapses in speech are to be expected and are nearly always temporary.