15 Year Journey to Seizure Freedom

With medication adjustments that offered somewhat better epilepsy control, Tammy accepted a special education teaching position in Anchorage, Alaska.

"I had learned there was a lot of opportunity in special education there," Tammy says. "I enjoy learning about new cultures and different ways of life, and I thought I had something to offer kids with disabilities. I had a disability myself and felt I could show them through experience how to overcome challenges. I wasn't going to let epilepsy control this decision."

While the area had no epilepsy specialist, Tammy began seeing a neurologist in Anchorage. She learned about vagus nerve stimulation (VNS) technology, in which a device implanted in the chest sends electrical pulses to the brain to help prevent seizures. She traveled to Seattle to meet with a physician who offered VNS, but that doctor did not feel it would provide the results Tammy hoped for.

As Tammy left the office, she spotted a brochure on responsive neurostimulation (RNS), a device implanted in the brain to detect the first signs of seizures and stop them before they occur.

"It was something I hadn't heard about, a new device, a new procedure," Tammy says. "A better chance of stopping seizures was expected, with less chance of speech or memory loss. That sounded promising."

Her Anchorage neurologist didn't offer RNS, but helped Tammy learn it was available at The University of Kansas Health System, a facility she hadn't visited in several years. In February 2016, Tammy obtained a referral to epileptologist Carol Ulloa, MD, who joined the organization in 2015 as the medical director of the accredited Level 4 Epilepsy Center. Tammy returned to the Midwest to investigate this treatment innovation.

In Kansas, Dr. Ulloa and Tammy had a detailed discussion of her epilepsy treatment journey to date.

"I felt Tammy could be a good surgical candidate, and I needed another full evaluation to build my hypothesis on exactly where the seizures originated and my opinion on the best treatment," Dr. Ulloa says. "It was important for the current epilepsy team to assess Tammy thoroughly so we could offer her our best recommendations in light of advances in treatment options since she had last visited our facility."

Tammy was pleased with the approach.

"It had been 12 years since I was tested, and this time, for the first time, I had a full team working for me," Tammy says. "I also felt I was part of that team, involved in making the decisions that were right for me."

The multidisciplinary team approach at last provided Tammy with the results she'd long searched for. Dr. Ulloa repeated an MRI, ensuring it was done with epilepsy protocol. She consulted with neuroradiologist John Leever, MD, who served as part of the epilepsy care team. Applying subspecialty expertise in reviewing Tammy's imaging, Dr. Leever discovered an abnormality never noted in the past.

Tammy's sphenoid bone – a bone at the front of the skull on which the temporal lobes of the brain rest – had a number of unusual holes through which the left temporal lobe of the brain was drooping. This is called an encephalocele. Neurosurgeon Jules Nazzaro, MD, performed an initial surgery, placing electrodes within the brain, to confirm this abnormality was the cause of Tammy's epilepsy.

"It was a great privilege to detect a very rare and commonly undiagnosed cause for Tammy's epilepsy and to be a part of the multidisciplinary epilepsy team effort that ultimately resulted in her cure," says Dr. Leever, director of diagnostic neuroradiology. "I cannot think of a better example of a patient benefiting from the most advanced neuroimaging techniques available, interpreted by subspecialty-trained diagnostic neuroradiologists."

In light of the new discovery, Tammy's memory center no longer had to be removed to eliminate seizures. She could now safely have surgery. With the true cause of Tammy's seizures identified, removing the brain abnormality offered a higher chance to stop seizures than RNS. Dr. Ulloa consulted neurosurgeon Paul Camarata, MD.

On Halloween 2016, Dr. Camarata performed a resection of Tammy's anterior temporal lobe encephalocele, safely removing an estimated 2-inches of drooping brain affected by the bone defects. He sealed the holes to prevent recurrence.

"Dr. Camarata is amazing, an excellent doctor and a good person," Tammy says. "A defect I'd had since birth was finally identified. I asked him why no one had ever found this, and he said it was simply a matter of skill sets coming together, the benefit of experience in neurology, neuroradiology and neurosurgery."

Tammy has not had a single seizure since.

"Epilepsy was a big part of my life, but I wouldn't let it control me," Tammy says. "If I hadn't gone to Alaska, I might never have found out about RNS, and if I hadn't found out about RNS, I wouldn't have come back to Kansas and to Dr. Ulloa. It's not always easy, but you must keep up your motivation and your confidence. You have to keep looking for answers, even if it takes time. Things do change. Treatment does advance."

As Tammy continues to live seizure-free, she will regain her driver's license. She hopes to return to Alaska and her students there. She credits The University of Kansas Health System and its multidisciplinary care for helping her put a positive end to a long journey.

"My care team was amazing," Tammy said. "I felt compassion. The doctors were absolutely devoted to patient care. They were 100% committed to finding answers as a team. For the first time, seizures aren't controlling every aspect of my life. I have certainty, and I have freedom."