A high school volleyball player didn’t know her episodes of nausea were seizures caused by a tumor in her temporal lobe. But when she finally got cleared for surgery, COVID-19 struck.
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Emily Langlois, 17, doesn't remember what happened before she woke up in a room with her volleyball team around her. She knows before she passed out she felt nauseous, like she did at every practice, and that was often blamed on not eating enough during the day. But this time her L'Anse Creuse North coach was more concerned.
Little did they know, Langlois had a tumor in her right temporal lobe, causing multiple seizures a day that would ultimately require brain surgery – and during the upcoming and unprecedented COVID-19 pandemic.
The diagnosis
After telling her team the right side of her body was numb during a practice, the Macomb teenager was rushed to the hospital where she learned her episodes of nausea were actually seizures from a low-grade brain tumor.
Certain stimuli, like the smell of buttered popcorn, particular drills at practice and brushing her teeth would trigger a seizure. It made sense now why she felt nauseous passing the concession stand to enter the gymnasium or setting the ball during a game.
In September 2019, Langlois received her first seizure medication, but it didn't help control the number of seizures she had every day. In November, the family was referred to C.S. Mott Children's Hospital where they met Julie Ziobro, M.D., Ph.D., a pediatric neurologist who found the exact location of the tumor on an EEG and recommended a different medication.
Langlois was willing to try the new medication with a caveat: she would start the treatment after she got to play in her team's regional championship game.
"She's a wonderful athlete and was determined her epilepsy wouldn't stop her," Ziobro says. "Her coaches worked with her and would look for signs of seizures, which were often subtle for Emily."
At the big game, the team lined up on the court. When each player was called, they'd step forward and wave to the crowd. Because the strobe lights triggered seizures, Langlois kept her eyes closed until her teammate tapped her arm to tell her it was her turn to wave.
"I played the game, and I guess God had a plan because we won," Langlois says. "And I didn't even miss a point."
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Tests, tests and more tests
After a few months with the new medication, Langlois still wasn't seeing a decrease in seizures.
"After trying two medications without improvement of the frequency of seizures, it was unlikely a third medication would work," Ziobro says. "It was time to discuss other options."
Among those options: brain surgery.
"Not everyone is a good candidate for surgery. We needed to make sure the seizures were localized and in an area of the brain that posed less risk of serious complications," Ziobro says.
She adds that it takes an extensive network of health care professionals to get someone with epilepsy to a point where surgery can be scheduled. Epilepsy neurologists, radiologists, speech pathologists, surgeons, social workers, medical and lab techs, neuropsychologists and other teams help make sure a patient is a good candidate for surgery, and if so, no brain damage is apparent after the procedure.
After a multitude of tests and a five day observational study with electrodes stuck to her head, Langlois underwent a Wada test in February. It tested her object and word recognition, speech, language, muscle strength and short term memory by putting various areas of her brain "to sleep" with anesthesia.
Following the Wada test, speech pathology and neuropsychological evaluations, Ziobro determined Langlois was a good candidate for a temporal lobectomy in March.
Having brain surgery during a pandemic
"While an open brain operation, a craniotomy, does carry real risk, for a young, healthy, cooperative patient with a lesion where Emily's tumor is located, there should be a low overall risk of permanent harm," says Mott pediatric brain surgeon Hugh J. L. Garton, M.D., M.H.Sc..
Still, the procedure did come with risks, such as peripheral vision loss.
When asked if she was nervous, Langlois says she wasn't at all, and was actually excited.
"I wanted to put this in the past and I knew U-M would help me do that," she says.
But soon after the decision was made, COVID-19 struck Michigan and non-essential surgeries were postponed. This unprecedented time left many, including health care professionals, unsure of what would happen next.
After a few weeks with more seizures and much discussion, Langlois' care team felt the surgery was essential and should proceed as planned.
The day before the surgery, Langlois' teammates held a 35-car parade in her neighborhood, including other student athletes and volleyball players she coached in a volleyball club at her school.
"My friends and family got me through the tough days," Langlois says.
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"Having seizures doesn't mean your life stops"
On April 16, a Mott surgery team, led by Garton, removed the tumor completely. Langlois hasn't experienced any complications so far, and Garton says she has a 70-80% chance of long term seizure freedom.
"It's only been a few months, so we can't guarantee that Emily won't ever have another seizure," Garton says. "But she's doing great, without any of the complications we thought she may have. I'm so happy for her."
Langlois has had a smooth recovery so far, practicing setting a volleyball with her dad in the yard, running, doing yoga and beginning to lift weights again – all seizure free.
She graduated high school on time in June and will be attending Concordia in the fall with an athletic scholarship. She plans to go into nursing.
"I can't wait to drive my car, too", she laughs. "I had my license for three months before I was diagnosed with epilepsy so I haven't been able to drive."
Today, Langlois says she feels like a new person.
"Having seizures doesn't mean your life stops. It'll be a time out maybe, but it won't just stop," she says. "It's a process of a lot of unknowns, but when the answer does come, and it will, it'll be better. When you get an answer, it feels like Christmas morning. You just have to wait for Christmas. Don't stop living your life because you're afraid of what might happen."
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Department of Communication at Michigan Medicine
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