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Spokane, Washington  Est. May 19, 1883

Finally, free from seizures: An innovative surgery tames Nabors Biviano epilepsy

Amy Nabors Biviano underwent an innovative brain surgery to deal with her epilepsy, and it’s been a  notable success. She recently held a birthday run  to raise money for epilepsy research. Here she visits her husband, Andrew, in his downtown Spokane office, Thursday, Nov. 21, 2019. (Dan Pelle / The Spokesman-Review)

Amy Nabors Biviano considers herself fortunate.

Of course, much of that good fortune is of her own making.

An Oklahoma girl who graduated from Yale, she has made more than the average share.

“My mom was mad at me for going to Yale,” she said, laughing. “Why do you need to go there?”

But months before she arrived in New Haven, Connecticut, to start her freshman year, the 18-year-old Amy Nabors was diagnosed with epilepsy.

“I didn’t keep it a secret, but at the same time I was very aware that when people find out you have epilepsy they start to treat you like you’re disabled. I didn’t want that,” she explained. “Sometimes you just need a little extra consideration, and thankfully I got that.”

That Amy Nabors met Andrew Biviano on her first day at Yale smacks of both kismet and a story-telling arc tailor-made for the Hallmark Channel.

“Epilepsy was just part of who she was,” Andrew Biviano said. “She’s never allowed herself to be defined by it. It has always been something that we just deal with.

“The most important thing that we work on is to make it as normal as possible. She is so much more than just that. She gets treatment, sure, but she leads a pretty normal life.”

Last week she celebrated her 45th birthday with a group fun run in Kendall Yards to raise money for epilepsy research.

For the first time since she entered college, she celebrated a birthday seizure-free.

Nabors Biviano attacks life with an astounding level of gusto.

She joined the women’s crew team at Yale and faced a rare setback.

“I wanted to row!” she insists, holding out her arms to demonstrate the limits of her reach. “But my arms aren’t long enough.”

She breaks into a full-on laugh.

“They made me a coxswain – go figure. The coach said, ‘Amy, if you want to row you can use a rowing machine while the rest of the team works out.”

It’s one of the few times where she’s felt limited by life and, well, sleeve length.

Perhaps having short arms is why she attacks life with enthusiasm.

Bloomsday?

“I always run the course twice,” she said. “The second time around you see all the people walking or pushing strollers. They’re always having a great time – those are the people who get what it’s all about.

“Yeah,” Andrew Biviano said, laughing. “There are always people doing the course that she passes twice. But she always encourages them as she goes by.”

When the couple flew to San Francisco, where her surgery would be performed at the University of California, San Francisco, it turned out to be the weekend of the city’s annual marathon.

Nabors Biviano ran it. Twice.

“I ran it as a half-marathon,” Andrew Biviano explained. “When I got done, I went back and did the last 10 miles of Amy’s second marathon with her. In the end, I did almost a full marathon.”

It’s hard to look at even a half-marathon with any amount of pride when your spouse turns a double play out of the race.

She attacked epilepsy the same way: proactively.

She studied and found ways to mitigate its effects.

She found that a high-fat, low-carb diet helped.

Exercise helped, so she took up running – that came in handy since she had to give up driving. Few people embrace public transportation with the enthusiasm Nabors Biviano has. Give her a bus pass and a pair of running shoes and she not only took on the city of Spokane, she ran for public office. Twice.

She attacked the procedure with the same amount of enthusiasm.

The couple have tag-teamed research into epilepsy.

In 2003 she underwent an experimental surgery that ultimately was unsuccessful. But it did add substantially to what researchers have learned about the condition. And by 2018 researchers at UCSF were looking at something new.

“They were looking for patients who fit their protocol, and when I got in touch, they told me that I did,” Nabors Biviano explains. “They told me that I would need to come to San Francisco three times for examinations and testing, but that their funding did not allow them to pay for me getting there or for staying in a hotel.

“He said that, if it made a difference, he would, as part of the study, take another look at my history to see if there was anything more that he could do. And then he asked if I was still interested.”

She breaks into a wide grin. “Uh, yeah!”

The process included a couple of days in the hospital off her seizure medicine so that doctors and researchers could track the electrical impulses to find their exact point of origin.

That first day off meds, she had about 70 seizures.

They found a patient who was well-read on both their study and the state of epilepsy research who was not just excited about the process. Nabors Biviano was, well, giddy about it all.

“When I first went to Yale, I wanted to major in chemistry and become a doctor,” she explains. “Epilepsy kind of derailed that whole dream.

“Being able to participate in this whole process and to be part of this important research really engaged that old dream. It was so exciting!”

The testing was able to map the exact point where all of her seizures originate, and they proposed a surgical procedure to remove the area.

“At first they planned to take out a piece of my brain about this big,” Nabors Biviano said, holding up the final joint of her little finger. “Once they got in there, they ended up taking out a piece about the size of a third of my hand.”

Doctors found the tissue around the origin point was a different texture. In layman’s terms, all those seizures just wore it out.

“I have not had a single seizure since the surgery,” she said with a look of utter peace on her face.

Without seizures, she now sleeps through the night. The vast majority of her seizure activity came at night.

She even paused her strict diet.

“I haven’t had key lime pie in ages,” she said. “I LOVE key lime pie. So I did!”

Rehabbing post-surgery was a bigger challenge.

“We talked about it, and the family told her that she needed to be as aggressive with resting as she was with everything else,” Andrew Biviano said. “And she got that piece of it and I have to say that she has done that. Totally.”

Nabors Biviano is a senior accountant at Disability Rights Washington, and she stresses that she could not have had a more understanding and considerate employer.

“They have been so great, and they have allowed me to get better at my own pace,” she said. “I am so lucky. And I am so grateful.”

There are more trips to visit the doctors and research staff ahead – that happens when you’re part of a study. They study success as much as they follow up on setbacks.

You get the distinct impression that an occasional getaway to the City by the Bay isn’t really an imposition.

Running has had to take a back seat as her head recovers from having a piece removed for the procedure.

It’s too soon for having her head jostled by running, she said. She’s not going to miss running on ice and in snow.

Her husband reveals a family secret.

“While she’s resting and recovering, we both are going the same speed,” he jokes. “I know it’s not going to last for long, but it’s nice while it lasts.”

Nabors Biviano is adamant when she says she is indeed fortunate. She lives at a time when the science of epilepsy has grown to the point where treatment can be successful. And she’s grateful that her life allows her to be able to be part of the research.

“I’m very lucky,” she said.

Where Nabors Biviano has not slowed down is in her advocacy for epilepsy research.

And she is a fierce advocate for people dealing with epilepsy.

“It was never a secret that I have epilepsy,” she said. “But when I was running against Rob Chase for treasurer, I had a seizure just before we went on stage for our public debate.

“(Retired Spokesman-Review columnist) Doug Clark wrote about it – he told me he was going to make me the face of epilepsy in Spokane. I really wasn’t sure I wanted to go that far with it, but it’s been good.”

Even at Yale students dealing with epilepsy would seek her out for both advice and encouragement.

With her story now in the pages of the local newspaper, the reaction has been overwhelmingly positive.

“I am so pleased that young kids reach out to me,” she said. “Some even come up to me in person.

“The best part of this whole process is that I can give people with epilepsy hope. There are all kinds of different forms of epilepsy. What worked for me may not work for you. But this is where we are with research. We’re finding answers. I’m glad I can help spread that news.”