Jennifer Alvis was diagnosed with epilepsy when she was four years old.
Now 40 years old and seizure-free, Alvis jokes that it took 36 years for technology to catch up so she could receive the care she needed.
Alvis has a type of epilepsy known as drug-resistant epilepsy—a condition shared by around 1.2 million people in the United States. Only a small percentage of those patients get treatment beyond medication, and for those that do, there’s a substantial treatment gap.
“The average time from getting diagnosed to seeing a neurologist who specializes in seizure treatment is 20 years,” said Angela Peters, MD. “We are aiming to bring that number down.”
Peters is an epileptologist—a neurologist who specializes in epilepsy-specific neurology. The majority of her practice focuses on helping patients like Alvis.
“We can do a lot to treat patients with more complicated cases,” Peters said. “It’s our job to go out into the community to educate people and doctors about what we can do to help as an epilepsy center.”
University of Utah Health is one of just a few Level 4 epilepsy centers in the United States. A Level 4 epilepsy center offers extensive testing, evaluation, and a broad range of treatments and surgical procedures for epilepsy patients.
Initially, Alvis’ seizures only happened while she was asleep, but soon she was having them during the day as well. Alvis was prescribed two antiepileptic medications. While they didn’t stop her seizures completely, the medication helped reduce their frequency.
When Alvis was 24 years old, the medication stopped working altogether. She started having very frequent seizures, mostly at night. Any medication she tried was ineffective and, over time, things got worse.
Alvis lives in Mountain View, Wyoming, but she grew up in Utah and has always been a patient with U of U Health. In 2012, she traveled to Utah for a surgical work-up. At this point, Alvis was having nightly seizures and was not responding to any of the antiepileptic medications she had tried.
Alvis underwent extensive testing, including a long-term intracranial electroencephalography (EEG) where she spent several days in the hospital with electrodes placed on her brain.
“This test helps determine where the seizures are coming from in the brain,” Peters said. “Then, the neurosurgeon can do a brain resection and remove the affected brain tissue.”
Alvis’ first brain resection surgery was in 2012. She enjoyed six seizure-free months before they returned.
“It was diminishing in a way, because I couldn’t be fully active without wondering or second-guessing myself...can I actually run that half a block and not have a seizure? It was just really hard.”
In September 2014, Alvis had a second brain resection surgery to remove more brain tissue. After surgery, she had fewer seizures, but they still continued.
Five years later, Alvis was still having seizures, and her medication started causing side effects.
“We decided it was time to do another surgical workup,” Peters said. “We determined there was still a little area around the resection cavity where a lot of seizures were coming from.”
Alvis’ third surgery would involve removing more brain tissue and implanting a responsive neurostimulation device (RNS) in her brain. RNS, also known as a brain pacemaker, monitors brain activity and provides electrical stimulation to the brain to help prevent seizures.
“What makes U of U Health different is that we have a lot of specialists who know how to do the work-up for epilepsy surgery and brain pacemakers,” Peters said. “We also have neurosurgeons who have trained specifically to perform these surgeries.”
A specialized neurosurgery team at U of U Health performed Alvis’ third surgery. Alvis’ seizures originated from an area close to the motor cortex of the brain, meaning that only a small amount of brain tissue could be removed without damaging Alvis’ motor skills. The neurosurgeon removed as much brain tissue as he safely could from the affected area before placing the RNS.
Eight years later, Alvis is still seizure-free. She is on a low dose of two medications, with minimal side effects.
“I just can’t tell you how wonderful it is to walk out the door and not have to wonder if I can make it to the mailbox without falling down...Having my life back has been amazing.”
Although going through this trial has been difficult, disappointing, and rewarding, in the end it was all worth it for Alvis, who is now able to do what she loves without worrying about having a seizure.
“One of my favorite things to do is go out and walk dogs, to be able to run, and be out in nature,” Alvis said. “I never would have been able to do that if I was still where I was back in 2012, having so many seizures.”
Alvis has a supportive family system, including her 17-year-old daughter, who is her world.
“She had to learn at a very young age that mom isn’t quite stable all the time,” Alvis said.
Today, Alvis is better than ever. Aside from two low-dose medications, she travels to Utah from Wyoming twice a year to meet with Peters and make sure her RNS is still doing its job.
“I always say I hate technology because of the phones, and I could do without the electric car,” Alvis said. “But in this case, I love technology.”
Alvis would like to extend a special thanks to Dr. Peters and Dr. John Rolston, a neurosurgeon who was with U of U Health at the time, for all their hard work to make her life better.
Make An Appointment With Our Epilepsy Program
Many epilepsy symptoms mirror symptoms of other medical conditions. It’s important to get a proper diagnosis and rule out other potential causes. Talk to your primary care provider if you think that you or your loved one might have epilepsy. Many primary care providers can diagnose epilepsy and prescribe you medication to start.
Patients can call 801-585-7575 or request an appointment online to see an epilepsy program provider. Some insurance plans will ask for a referral from a primary care provider to see a specialist. Our schedulers can request a referral from your primary care provider. You can also contact your insurance carrier for questions about your coverage.