It didn’t seem like a life-threatening crisis when it started.
For roughly one week in 2017, 22-year-old Corinne Trost was ill with flu-like symptoms. Then, on the night of April 28, her boyfriend saw her have a seizure.
Corinne was rushed to a hospital, only to be sent home a few hours later. Back at home, she had another seizure and returned to the hospital. Her hospitalization was the beginning of a long nightmare: Corinne began experiencing more frequent seizures—so many that they became near continuous.
Eventually, Corinne was transferred to an epilepsy treatment center, where she was placed in an induced coma. Specialists conducted MRIs and lumbar punctures to diagnose the problem. Corinne also had a catheter “bolt” placed inside her skull to monitor intracranial pressure. By May 22, she developed pneumonia and a collapsed lung. Doctors were unable to prevent or relieve her seizures. Her care team told Corinne’s parents to prepare for the worst. They did not expect Corinne to survive.
Then Corinne’s mother was told that doctors at University of Minnesota Medical Center might be able to help. Corinne was transferred the next day.
After Corinne got settled in ICU, a multidisciplinary team of doctors discussed her case. Afterward, they approached Angie Aguilera, Corinne’s mother. “We have a plan,” they told her.
“That was the beginning of more and more tests,” said Aguilera. “But they gave us so much hope.”
“Treatment begins with a clear diagnosis,” said University of Minnesota Health Epileptologist Thaddeus Walczak, MD, a member of the Minnesota Comprehensive Epilepsy Center, also known as MINCEP. “Corinne was diagnosed with new-onset, super-refractory status epilepticus (NORSE). We know that with intense treatment of the seizures and meticulous ICU nursing care there is a chance for recovery.”
Super-refractory status epilepticus occurs when a person has continuous or near-continuous seizures with no recovery to “baseline” brain function between the attacks. It is categorized as a neurological emergency.
MINCEP specialists were deeply involved in Corinne’s care—conducting constant EEG monitoring and helping ICU caregivers adjust Corinne’s anti-seizure medication during her treatment at University of Minnesota Medical Center.
“Treatment involves ‘turning off’ brain activity in certain ways to shut down the seizure process,” said Walczak. “Usually, brain activity has to be severely suppressed for only 36 hours, but sometimes it takes weeks. If the medications aren’t effective, then we look at other options, including surgery. We don’t give up in a situation like Corinne’s.”
Initially, Corinne was placed in an even deeper coma. Seizures returned after the coma was lightened and multiple courses of brain activity suppression were needed. By the end of June her medications were decreased and on July 3 her seizures stopped. Ten days later Corinne was transferred to a rehabilitation center.
“The whole time we were at the University of Minnesota we were informed,” said Aguilera. “The doctors, residents, the nurses—they took the time to answer questions and we never felt out of loop. We were getting the best care.”
Founded in 1964, MINCEP Epilepsy Care was one of the first three comprehensive epilepsy centers in the nation. It is currently a designated as a Level 4 Comprehensive Epilepsy Center by the National Association of Epilepsy Centers.
“This means that we offer services at advanced levels, including continuous video and EEG recording,” said Walczak. “Not all places can do that. It requires experience and highly trained technicians.
The center also offers advanced MRI brain scanning to identify the possible causes of a person’s epilepsy, is equipped with experts in anti-seizure medication, and offers a full spectrum of epilepsy surgeries.
“If a person continues to have seizures you haven’t completed your job,” said Walczak. “We continue working until the patient is no longer worried about seizures and can return to activities like driving a car. Though we don’t always get there, we do not give up.”
Awake again, and no longer experiencing seizures, Corinne was discharged from University of Minnesota Medical Center. But her care wasn’t over. To regain function, she started weeks of physical, speech and occupational therapy.
“I felt like a baby,” Corinne said. “I had to learn how to write and talk again.” To keep her spirits up, she decided to wear a tiara, even during physical therapy.
Corinne’s journey back to full health continues. For example, she still struggles with short-term memory issues.
The good news? Corinne is well enough to start a part-time job waitressing. She hopes to move back on her own at some point. And soon she will be cleared to drive a car by herself.
Corinne occasionally returns to University of Minnesota Medical Center to visit.
“I don’t always know who is hugging me because I don’t remember being there, but I know that to them I wasn’t just any person,” she said. “They had the attitude: ‘We’re going to help this girl and we want her to be OK.’ I love how they remember me.”
“I’m thankful,” she said. “I am so thankful.”