October 21, 2019
Shyanna Cassatt has few memories of her childhood. One of 5 siblings, she grew up in Bellevue, Kansas, a small community near Manhattan. At age 7, she developed serious inflammation of the brain called encephalitis. Her parents took her to the area's leading children's hospital, where she experienced paralysis on her left side and a coma. Fortunately, she recovered, but the ordeal took away her memories to that point.
Several years later, Shyanna experienced a grand mal seizure, which led to violent muscle contractions and loss of consciousness. Her parents took her back to the doctor who had treated her encephalitis. The doctor diagnosed Shyanna with epilepsy and determined it was the result of scar tissue in her brain from the earlier illness.
"I don't remember the first seizure," shares Shyanna. "In fact, I don't remember very much about this period of my life. Once the seizures began, they caused long-term memory loss."
Frequent seizures lead to limits on life
Shyanna's doctor prescribed anti-seizure medication, but it didn't stop her seizures. This was the beginning of many years of seizures for Shyanna, which created limitations on her life.
According to Shyanna, "I never knew when I would have another seizure. There were no warning signs. They just happened. As a kid, I couldn't do much with friends. I was pretty limited in my activities."
At 16, Shyanna outgrew care with her pediatric neurologist, so her parents took her to a neurologist in Manhattan, Kansas. Because her seizures were uncontrolled by the medication she was taking, the neurologist prescribed new medications for Shyanna. None of them worked.
Despite the seizures, Shyanna experienced an important rite of passage. She earned her learner's permit at age 15 and her driver's license at 16, which gave her a new sense of freedom.
"Unfortunately, that freedom did not last," says Shyanna. "My seizures got worse, so when I was 17, it was no longer safe for me to drive, and I lost my license. That was difficult and upsetting. I was pretty depressed for a while, because I felt like my independence was being taken away, even though I understood why."
At this point, Shyanna was taking 3 different anti-seizure medications, yet was having as many as 3 convulsive seizures per week. Because they were often triggered by hormones, the seizures were more frequent and severe during her menstrual period.
"During that week each month, I stuck closer to home or only went out with my family," she says. "They knew what to do when a seizure occurred, and they stayed with me until it passed, which usually took 2-3 minutes."
After she graduated from high school, Shyanna completed a training program and became a certified nursing assistant (CNA). She got a job at a local assisted living facility. She shared information about her seizures with her manager, who was flexible to help her maintain her job.
The need for more specialized care
In June 2018, when Shyanna was 20, she was still enduring frequent seizures. Her neurologist suggested that surgery might be an option. She referred Shyanna to The University of Kansas Health System, home to the only Level 4 Epilepsy Center in the state of Kansas.
Shyanna was scheduled for a series of tests at the epilepsy monitoring unit to evaluate her condition, including a CAT scan, EEG and MRI. In addition, Shyanna was admitted to the hospital for a seizure study. Her medications were reduced, and she was monitored around the clock for a week by a video EEG to record her seizures and physical movements.
Once the tests were complete, Shyanna had her first meeting with epileptologist Carol Ulloa, MD, a doctor who specializes in caring for patients with epilepsy. Dr. Ulloa explained to Shyanna that she had severe focal epilepsy. She also explained that the seizures were originating primarily in the right temporal lobe of the brain, with some additional seizure potential in the left temporal lobe.
"Every seizure is important. But in Shyanna's case, every time she had one, it was a full convulsion. This type of seizure is hardest on the brain and body," Dr. Ulloa says. "This is when we had our first conversation about the possibility of brain surgery."
Dr. Ulloa needed to learn more about Shyanna's seizures before she could plan surgery. She scheduled Shyanna for additional tests, including a depth electrode implantation, which is a minimally invasive surgery that helps determine the origin of seizures. On June 18, 2018, Shyanna was admitted for the procedure, in which a series of thin wires were placed in her brain through tiny holes in the skull to further pinpoint the specific areas of the brain that caused the seizures.
Surgery offers new hope
Dr. Ulloa presented the newest findings to a team of health system specialists in an epilepsy conference, where multidisciplinary specialists come together to talk about the best treatment for each patient. Together, the team agreed Shyanna was a candidate for epilepsy surgery, so she was referred to neurosurgeon Jennifer Cheng, MD.
Drs. Cheng and Ulloa met with Shyanna and her family to review 2 treatment options – deep brain stimulation (DBS) and frontal lobe resection. With DBS, a device would be implanted in the brain to provide electrical stimulation that helps relieve seizures, with no removal of brain tissue. Dr. Cheng explained that DBS was a relatively risk-free option with an easy recovery. The technique was recently approved by the Food and Drug Administration as a treatment standard for epilepsy. The University of Kansas Health System was part of the trial that brought this treatment to market and is the only organization in the region that offers this option for the treatment of epilepsy.
Shyanna's other option, frontal lobe resection, involved removing the part of the brain that was causing the seizures. With this procedure, Shyanna might experience supplementary motor area (SMA) syndrome, which causes weakness on 1 side of the body that sometimes requires inpatient rehabilitation to address. Dr. Cheng would also perform radio frequency ablation (RFA), a minimally invasive procedure that uses heat to destroy brain tissue through a tiny opening of the skull.
"We explained to Shyanna that the frontal lobe resection plus radio frequency ablation would most likely offer her a partially seizure-free life. But unlike DBS, these procedures would require a more challenging recovery," shares Dr. Cheng.
According to Dr. Ulloa, "We also believed she had a significant chance of SMA, which can be dealt with, but creates real difficulties in the short term."
After considering her options, Shyanna felt most comfortable with resection as a long-term solution.
"Dr. Ulloa and Dr. Cheng were wonderful," says Shyanna. "They explained everything to my parents and me, so we knew exactly what was going to happen. It eased my mind knowing how experienced they were at this. At the same time, I was still worried. What if I went through with this and it didn't work? But mostly I was excited that this might be the thing that really helped me."
On June 27, Dr. Cheng performed surgery, completing the ablation first, followed by the frontal lobe resection. Because the affected tissue was close to the area of the brain that controls movement, Dr. Cheng used intraoperative stimulation mapping and phase reversal to guide her during surgery. She also used electrocorticography, which involves placing electrodes on the exposed surface of the brain to check for seizure activity before and after the procedure. The surgery went well, with no complications.
Life begins anew
Shyanna was discharged from the hospital 4 days after her surgery. Because she did experience weakness on 1 side of her body from SMA, her recovery included a combination of physical therapy and occupational therapy, along with speech therapy to help her work on words she had difficulty pronouncing.
"Recovery was difficult for me at first," says Shyanna. "But then I began doing better. I had been told to expect 5 months of therapy, but I was released after only 4 months because I was doing so well. I was able to go back to my CNA job."
Since her surgery in 2018, Shyanna has remained seizure-free. And her life has expanded in positive directions.
"Today, Shyanna has dramatically improved quality of life. She no longer suffers from seizures. As a result, she has a significantly lower risk of early death. I’ve also observed improvement in her mood and all-new independence," says Dr. Ulloa.
Shyanna is continuing her care with Dr. Ulloa. She is slowly being weaned off of her medications. The goal is for her to eventually be on just a single medication.
"What a difference this surgery has made in my life," offers Shyanna. "It's helped me so much. Even when it seems hard, I've learned it's always worth continuing the journey to try to find answers."
Dr. Cheng agrees.
"She's doing so well," says Dr. Cheng. "She's happy, and her post-surgery weakness is gone. We're more than a year past Shyanna's surgery, and she hasn't had a seizure since. And though it's possible she could have another seizure someday, I think the chance is low."
According to Shyanna, "Life is extremely different. I'm starting to drive again. I've felt more positive, in general, because I don't have to worry about seizures and what will happen if I have one. Eventually, I hope to be able to live on my own. My health is no longer holding me back."