The passion of Kira Iaconetti is to sing and act on stage. The self-taught musician, aged 19, spent all of her young life performing in plays and musicals until about four years ago, when she began to have a strange reaction every time she sang or listened to music.
"It was like a light switch off in my brain," Iaconetti said in an interview for Seattle Children's Hospital. "Suddenly, I was deaf, I could not process the words to the rhythm of the music and I could not sing."
Iaconetti would have these "episodes" for two minutes and then return to normal, although strangely exhausted. However, he did not worry about the events until their frequency increased.
"Forcing myself to sing after one of these failures was extremely difficult," he said. "I would become incoherent, dragging and stuttering my words."
Iaconetti and his mother went to the Children's Hospital in Seattle, where a neurologist told him that the episodes were a type of attack that only occurred when his brain was exposed to music. An MRI showed that there was a calcified tumor that pushed against his auditory cortex, causing seizures, "in a kind of twisted joke of the universe," he said.
"His tumor was discovered due to a very unusual type of epilepsy that he had called musicogenic epilepsy," explained Dr. Jason Hauptman, a neurosurgeon at the hospital. "These attacks are triggered by listening to music or singing, which is an unfortunate problem for Kira, since she is an artist who likes to sing."
Working with Iaconetti and his medical colleagues, Hauptman formulated a surgery plan that would allow them to remove the tumor and, hopefully, preserve the adolescent's ability to sing and process musical notes.
"Playing with [the tumor] could affect my voice permanently, and as Dr. Hauptman knew how important it is for me to keep singing and acting, I wanted to be very careful about removing the tumor," he said. "I did not want to interfere with my ability to sing."
Hauptman opted for an awake craniotomy, which means that she would go to Iaconetti's brain while she was under anesthesia, and then wake her up to sing, igniting the areas of the brain that work when she is using her musical skills.
"Our goal was not just to take care of the tumor, but to improve his life. "We wanted to preserve the things that matter to him, like his passion for pursuing a career in musical theater," he said.
Making a patient wake up and sing was the first for Seattle Children's surgeons
"Never before has a patient sung in the operating room, and Kira is a talented music," said neuropsychologist Dr. Hillary Shurtleff. "Her voice is so beautiful and her willingness to do something new helped make the entire process interactive, collaborative and exciting."
The surgery on September 4 went smoothly, with Iaconetti testing his singing while the doctors planned his brain. Then, Hauptman worked on the removal of the tumor while singing Weezer's "Island in the Sun", which he chose because it made him think of his family and of Hawaii, where he was born. In addition, one of the lines says: "I can not control my brain", to which he added, "literally".
The doctors put her back to sleep after that and finished the surgery, and Iaconetti again sang and played the guitar 48 hours later from her hospital bed.
Hauptman said that Iaconetti probably will not require any additional surgery.
"Kira is a remarkable young woman who had a terrible problem," she said. "We met and developed a very novel way of addressing your problem that we hope will have a positive impact for the rest of your life."
And Iaconetti is ready for his next show.
"My biggest fear before the surgery was that the seizures prevented the realization," he said. "Now, I want to get back on stage to act as soon as I can."
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