WHEN MUSIC BECOMES TOXIC
For woman with rare condition, sound is ‘like nails on a blackboard’
Saskatoon pianist Irene Lacoursiere suffered a concussion in 2017. Since then, the sound of a piano makes her ill. She has moved the instrument to her basement as she is no longer able to play.
Irene Lacoursiere knew something was wrong when she vomited on the piano.
On May 28, 2017, Lacoursiere struck herself in the head with a small wooden post while trying to set up a bird feeder in her backyard. She was quickly diagnosed with a concussion. As the days progressed and Lacoursiere tried to continue playing for her students, the lifelong pianist felt like something was off.
After all, the sound of a soprano singing voice had never literally knocked her off her feet before.
“It felt like nails on a blackboard that punch you in the stomach and make you want to throw up,” she said. “It was just too much.”
Lacoursiere didn’t take much time away to rest after her head injury because she was due to play for some of her students in the upcoming provincial music festival. Having never been concussed before, Lacoursiere assumed she’d be able to get back to work with a few days of rest.
Instead, she returned to work after a very short time away from playing the piano. Lacoursiere was soon back to work teaching lessons when the sounds of the piano and the high notes of the singer she was accompanying made her ill. She threw up and collapsed out of her chair — a violent reaction to sound, even in light of the concussion.
“I did not see it coming,” she said of the change. “I don’t know what it was ... it was instant.”
At that point, Lacoursiere had never heard of bilateral superior semicircular canal dehiscence — a rare condition resulting from an additional opening in the superior semicircular canal in the inner ear caused by physical trauma or genetic predisposition. The additional “hole” in the canal can have adverse affects on hearing and balance, leading to dizziness, nausea, physical instability and more that vary in severity depending on the case. The “bilateral” part means it’s affecting both of her ears.
Since the injury, Lacoursiere hasn’t been able to play piano or even listen to music. Going out shopping can be a dangerous prospect if there’s music playing in the store or the mall, which has caused her to faint in public. Lacoursiere is often struck by bouts of dizziness and exhaustion, and has to be exceedingly careful with the workload and physical stress she puts on herself.
She slipped and fell in the winter — concussing herself again — and was finally diagnosed with superior semicircular canal dehiscence after an MRI and a CT scan. Lacoursiere was relieved that she had an explanation for what was going on in her head.
“I got very, very excited ... it was a real thing,” she said. “And in some cases, it can be fixed.”
When Lacoursiere visited an ear, nose and throat (ENT) specialist, she was told her syndrome was a “unicorn condition” — everyone’s heard of it, but no one’s ever seen it. According to Lacoursiere, the ENT told her to “don’t get your hopes up ... learn to live with it.”
It’s the first time since her injury that she broke down in tears.
“That was the first time it occurred to me this might be the new normal, the new forever and ever,” she said.
When she was diagnosed, and through meetings with specialists, Lacoursiere was told there were two possible options: learning to live with the symptoms — which is a common solution presented for people diagnosed with the condition — or surgery. Seeing no alternative to continue her livelihood, Lacoursiere visited a specialist in Alberta to get a surgical assessment — and was told she wouldn’t be a good candidate for surgery.
The thought of having to live with the condition for the rest of her life was devastating.
“Couldn’t listen to music. Had to move the piano downstairs. I couldn’t bear to look at it,” she said. “Even when you’re trying to live a very quiet life, there are times when you just can’t help hearing music.”
Despite the severity of her symptoms, there is still a slim hope for Lacoursiere that the worst of what she’s experiencing is resulting from post-concussion syndrome and not her diagnosed SSCD. Lee Stevens, the director of concussion management at Craven SPORT services, said post-concussion syndrome is usually classified as someone having concussion symptoms beyond the average recovery period of two to four weeks, though that time can vary.
Stevens said that while the symptoms experienced by Lacoursiere could be caused by a concussion, they “are not exclusive” to a concussion — which makes diagnosis very difficult.
“It would be nice if we had a go-to ‘rule it in, rule it out’ sort of test ... the reality is we’re not there yet,” Stevens said. “A lot of it ends up coming back to clinical judgment, clinical decision-making on the part of health care professionals.”
Stevens said the old method of sitting in the dark and waiting for concussion symptoms to pass by is no longer viable. Every person who comes into the clinic goes through a process of determining when they can “return to learn” and “return to play,” according to Stevens — essentially a schedule to steadily reintegrate themselves back into their work and leisure.
Since Lacoursiere struck her head and did not take time to rest and recover before getting right back into playing piano — and because she slipped on ice and struck her head a second time less than a year after the first incident — Stevens said it’s not out of the question for post-concussion syndrome symptoms to linger this long.
“There is going to be a certain subset of individuals that go on to have more persistent symptoms that linger beyond the expected period of time,” he said. “The big question becomes at that point ... Why is this person still having symptoms when under normal circumstances we would expect them to be recovered from their concussion?”
“Quite often, we find with those people that have persistent or lingering symptoms, there may be something going on with one of their other body systems preventing them from getting over their symptoms,” he added.
Lacoursiere’s piano — a longtime centrepiece of her home — is now tucked in her basement. She had it moved there when she got to the point that even looking at the instrument was making her nauseous, associating it with the ear-ringing, head-spinning sickness that now comes with hearing it.
“I played three or four songs in church ... in October (2017),” she said. “Since I started taking piano lessons when I was four, that’s the longest I’ve ever gone without playing the piano.”
She’s been away from playing for a while now, but her former students haven’t forgotten about her. A Gofundme page was started on Lacoursiere’s behalf, and a fundraising concert was held in late July at Redeemer Lutheran Church in Saskatoon to help her get treatment.
It’s a concert she couldn’t even attend.
“Ironic, hey?” she said, tears in her eyes. “I always considered myself a junior. I never made it to the top ranks. I just did it ... so I feel like I’ve been really honoured.”
Lacoursiere hasn’t given up hope yet. She’s going for a vestibular evoked myogenic potential — or VEMP — test at the end of the summer.
The test is used to assess the functional capabilities of the inner ear, and will hopefully help her determine whether her severe symptoms are caused by post-concussion syndrome or superior semicircular canal dehiscence.
The piano in her basement has been covered with old books, knickknacks, and photocopied sheets of music. Lacoursiere would love to have an excuse to dust it off and play it again, but for the foreseeable future her home will be a quiet one.
“Silent Night isn’t all it’s cracked up to be when it’s a reality at Christmas,” Lacoursiere said. “Hearing the stuff, even when it didn’t effect me ... I couldn’t stand it.”