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01:14
Singer has voice back after brain surgery to remove tumor making her 'tone deaf'
A singer-songwriter was diagnosed with a rare epilepsy triggered by music after she went tone deaf - and had to sing through brain surgery to cure her while retaining her abilities.
Kira Iaconetti, 25, says a marble-sized brain tumor caused her to suffer from musicogenic epilepsy - where seizures are triggered by music.
The symptoms of her seizures included brain fog, struggling to hit the right key while singing, and slurred speech.
After three years of medical investigations, doctors found a tumour on her right temporal lobe.
While the mass was non-cancerous, it meant she couldn't process the words in time with the music or sing.
Kira opted to have it removed surgically and stop her seizures.
But to remove it without harming the parts of her brain needed for musical skills surgeons performed an awake surgery at Seattle Children's Hospital.
She sang and played guitar so surgeons could check what parts of her brain could be touched.
Now, seven years on, Kira's talent has been totally restored - and she's even auditioning for "big movies" as well as starring in community theatre musicals. "
Kira, who works part-time as a restaurant server, from Lynden, Washington State, US, said: "As soon as he found the mass, my doctor said: ‘This isn't going to kill you, but your talent and passion are under threat.'"
"I had to wake up during surgery and sing to them - I was asked to choose five songs I knew completely off-by-heart - including 'Island in the Sun' and two Niall Horan songs, which I can't remember the names of."
"This was so my surgeon would know he was going in the right direction; if he pressed on a part of my brain and I sang off-key, he'd know he was in the wrong place. "
"I was filled with anxiety about having to be awake during surgery - but I didn't let it show." "
Ever since she was little, Kira had dreams of being a "big Hollywood actress" - and starred in school plays up until her senior year, as well as community theatre. "
But at the age of 15, in 2015, she started to notice her brain "glitching" while singing songs. "
At first, the ‘glitch' was barely noticeable and it involved minor head fog and her stumbling over words - but it got worse over the course of three years.
"I was home alone doing some YouTube karaoke," Kira said. "
"It was like a little light switch went off in my head - my brain went foggy, I was tripping over words, I couldn't follow the key anymore, and all my energy was zapped. "
"I'd have to keep it really easy and lowkey afterwards, just chilling out until I got my energy back. "
"It felt, at first, like I was the only one who could notice it - but my symptoms quickly progressed to my right foot, then entire leg, becoming numb and tingly. "
"I was like: ‘This isn't normal, this is more than just a panic attack.'"
"But I didn't know what else it could be." "
Kira didn't feel like her symptoms were serious enough to speak to anyone about, but in 2016, after her performances became affected, she decided to tell her parents.
An EEG at the St. Joseph Medical Centre, Bellingham, came back clear, and Kira didn't know she was supposed to book an MRI and CT scan in herself.
Another two years went by before getting a diagnosis; but by 2018, Kira would perform in shows where she'd experience seizures during every song.
"I went back to Bellingham and got an MRI and a CT scan," Kira said. "
"I called them one afternoon to ask about my results - they said I had a marble-sized mass on my right temporal lobe. "
"They said it could be a malformation, and was unlikely to be a tumour."
"I hung up, and just sat there, numb."
Kira was referred to Seattle Children's Hospital, and underwent another MRI - which revealed the mass was calcified, and unable to be removed by a laser.
She was told she didn't need to have it removed - but to save her voice, the only option was major brain surgery.
A month later, on September 4, 2018, Kira was sent for surgery - which had taken weeks of planning.
She'd had to undergo a second MRI at the hospital, and ‘sing' five songs she knew in her head, which she'd repeat out loud during her operation.
This was so doctors could map her brain out, and look at the parts which would light up while she was 'singing'.
Kira said: "I had to wake up during the surgery and sing to them - which made me very self-conscious. "
"They were telling me I wouldn't remember anything after the surgery; which made me determined to memorise everything I could while I was awake. "
"I can't remember every song I sang - but there were at least two Niall Horan songs in there, Montana by Owl City, and Island in the Sun, by Weezer. "
"When I was woken up, partway through the surgery, I remember being covered by a big, blue tarpaulin. "
"I didn't feel anything, except the couple of incisions on my head, and they upped my anaesthesia as soon as I told them. "
"I asked my surgeon if my brain looked OK - he told me it was ‘beautiful.' "
"I sang through my songs, and there was a music therapist playing his guitar - I sang extra loud at one of the lyrics which was: ‘I can't feel my brain.' "
"They all laughed, told me I did fabulously, and put me back to sleep." "
Kira's surgeons were able to remove the mass - and, despite a two-month recovery period, her voice is now back to "100 per cent". "
She says she doesn't experience any more glitches - and only feels them "trying to start". "
"My goal is, and always has been, to be a big actress," Kira said. "
"And I'm so happy I can get back to doing what I love."
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