Rebooting Kimberly's Brain

A sudden and intense onset of up to 70 seizures a day – accompanied by wild mood swings, crippling anxiety and even hallucinations – forced Kimberly Bari to give up her adventurous life as a young teacher in China.

Kimberly's UCSF team found that her seizures were starting in an area of her brain just millimeters from brain tissue she needs to speak and move her limbs, so they couldn't remove that area safely to treat her seizures. Instead, they used a technique called intraoperative brain mapping to implant a responsive neurostimulation (RNS) device.

Today, Kimberly is nearly seizure-free and is able to work and live independently. Hear Kimberly and her UCSF team talk about her procedures, and read a Q&A to learn more of Kimberly's story.

How Kimberly got her brain back

"It was always me and my brain, and we were always fighting," Kimberly says of her epilepsy. One day she was rushed to the ER at UCSF, where she met the team of neurologists who would save her.

When you began having seizures, what were they like?

When I developed epilepsy back in September of 2010, I was having 30 to 40 seizures daily. They would always start off with an odd taste, smell, hallucinations, auras. It would start as a simple partial seizure and evolve into a complex partial seizure where I would often lose consciousness or awareness.

I went to multiple hospitals in China for testing but was not properly diagnosed.

How were you finally diagnosed?

When I returned to the U.S., I still was not correctly diagnosed until I had an episode where I lost consciousness and an ambulance took me over to a local hospital. They did an EEG, which showed them, "Yes, she has epilepsy." That was when I got on my very first antiepileptic.

What was your daily life like at that point?

My cognition was so low that I basically reverted to being a 3-year-old. If I was watching TV, I couldn't comprehend what was happening. I could barely even speak a full sentence.

How did you find your way to UCSF?

I was brought to UCSF [in 2014] after having an allergic reaction to a medication, and Dr. Garcia became my epileptologist. I tried additional medications, but the seizures wouldn't stop. My cognition was so low that it was hard to have a job. It was hard to really live my life.

In 2015, Dr. Garcia said you were a candidate for surgery and you were hospitalized for a presurgical evaluation. Can you describe the experience?

They inserted a grid [before surgery] with 300 electrodes inside my skull. [Neurosurgeon] Dr. Chang would come in and explain, in terms that my family and I could understand, what he was seeing and what was possible. The goal was to determine whether it was possible to resect [surgically remove] the [brain's] insula area [where the seizures were starting].

You were a candidate for resection. How did you feel after that first surgery?

The most interesting part was emotional. I woke up from the surgery and thought, OK, I must be on some wonderful painkillers. I feel great.

My entire life, until that first resection surgery, I couldn't control my thoughts. I remember having these emotions – these high highs and low lows – for no reason. In middle school, I was sitting in my backyard on our little porch swing, and I remember tearing up and saying, "I wish for 30 seconds I could switch brains with a friend. I just want to know what it's like to stop thinking." And that did not happen until after that first resection surgery. I have not had that problem since.

Although my cognition returned [after surgery], it took about a day for me to be able to speak aloud. But mentally, I had no negativity.

After that surgery, you had fewer seizures but those you had were still intense. What was that like?

There were days when I would lose vision, I would lose hearing. I would often drool out of the right side of my mouth. People around me could see that something was happening, and I couldn't stop it.

It was more terrifying than before the surgery, [when] I would lose consciousness. When you lose consciousness, you wake up, you have some bruises, but you're fine. When you're awake and you can't take any control, that, to me, was the most terrifying part.

That's what led me to go back in to have more testing in March of 2017. They said, "Kimberly, you are a candidate to have a second surgery."

What did they recommend?

Through the stereo EEG, they found that, yes, it was possible to further resect the left insula area. However, there was another [seizure-causing] area that, if Dr. Chang had resected it, could have caused me to lose cognition and linguistic ability for the rest of my life.

Dr. Chang said, "Kimberly, because of that, we can't resect this area. So you are a candidate to have a NeuroPace RNS device implanted in your skull." And he did that, as well, for the second surgery in May 2017.

The device is working 24 hours, seven days a week. If it senses seizure activity, it will send off signals to try to stop the seizure from blossoming. That's the word they use: blossoming. When it's doing this, I can't feel it. I have no idea it's going off.

The NeuroPace can be adjusted for better seizure control. How does this work?

When I have a seizure, I take this [magnet] out and swipe it over my scalp. Then it [instructs the neurostimulator device to record brain activity]. Using a laptop, I can send all the information to Dr. Rao.

This way, when I come in for appointments, he can see when I've had a seizure, he can look at what he sees and what he thinks would be the next, best option to make any changes. When I say he makes changes, they're all external. He doesn't have to do anything invasive; it's all technologically based changes.

Dr. Rao gives me options, and as a patient, you get the final say if you want a change to be made.

It sounds like your life has changed completely since the second surgery.

I have a full-time job, a group of friends. I travel, I work out. I own a car and I drive. My life has gotten even better than it was before I got sick.

Do you still have seizures?

Maybe, at the most, five per month.

My seizures have significantly reduced in frequency and intensity. [They] last up to two minutes. When I do have a seizure, I am completely awake and aware, and I can move and even walk. If I'm having a conversation, nobody can tell I'm seizing at all. I have not lost consciousness in more than two years.

Now I don't have postictal [post-seizure] symptoms. A lot of the seizures I had, especially the complex partial seizures, I felt like I had the flu the following day.

It must be such a relief.

It's a whole different world, and I'm amazingly grateful for all the support that I've had – from doctors, family, friends. People haven't given up.

After the second surgery, I got back out into the social world. I had to let my brain heal, right? It wasn't easy. But I didn't give up, and I did a lot of that [healing] through volunteering. I am volunteering at UCSF's children's hospital.

I'm forever grateful for everything that the doctors have done because my seizures are now reduced and I live my life without worrying about them. And having this device, I know that I'm not dealing with epilepsy alone.

What is it like to have such a long-term relationship with UCSF's epilepsy team?

UCSF is one of the most amazing hospitals that I've been to. I go in and feel like I'm at home. I feel like they're family to me.

A Surgeon's Perspective

Kimberly's brain surgeon, Dr. Edward Chang, discusses the complexities of her surgery and how his team pushed the limits of what's possible to help her.

What were some of the challenges of Kimberly's surgery?

We figured out that Kimberly's seizures were coming from a part of her brain called the insula, one of the least understood parts of the brain. It's covered by the frontal and temporal lobes, so it's located physically deeper. Its functions are mysterious. We know that it's involved in processing some emotions, taste, even things like language, as well as our ability to know where our boundaries of self are.

What makes surgery in this part of the brain so complicated is that it's surrounded by parts that are critical for other related functions. Just inside the insula, millimeters away, are very important fibers that connect the part of the brain that controls our ability to move our arms and legs. So, if the surgery goes too deep, just by millimeters, that can cause the inability to move half the body.

How do you approach a surgery like this, where you're operating on an area of the brain that's not well known and yet so critical?

A lot of times in medicine, we are presented with situations that are not black-and-white. There's a huge gray zone between what we know and what we don't know. We often have to make decisions with incomplete information. Kimberly's case was just that. We had to do some unique things to figure out how to do this surgery safely, essentially pushing the limits of what was possible.

Part of that involved having her awake during her surgery, in constant conversation and communication with us. Part of it was mapping out her brain beforehand, using new technology. I think the most important was communicating with her regularly throughout her surgery, and getting her feedback as a member of the team, to make sure it was as safe as possible.

What kinds of questions did you ask her during the surgery?

Some were basic, like asking her to name objects she's seeing on a computer screen or to repeat words. But the kind of information that was the most useful was the kind of language she would use on a daily basis, having her describe where she came from, what she likes or doesn't like to do. It was critical to get that kind of real-time feedback, critical to knowing that – every minute and every second of that surgery – she was OK.

Her seizures also had a very interesting and important feature: They were causing panic attacks and severe anxiety. Those were actually occurring during the surgery, which was challenging. But it was important information – to know that she was still having those events – because we knew we weren't done with the surgery until those stopped.

Kimberly's surgery dramatically improved her quality of life. How does that make you feel?

It makes me feel great because that's what we were hoping for.

With the challenging cases we see, we can't promise there's going to be a successful outcome. The only thing we can promise is that we will throw everything we have at solving the problem and use everything we have in terms of technology, compassion and dedication.

When you think of Kimberly, what do you think of?

I think of resilience. I think of someone who is optimistic and positive in the face of really tough odds. That's inspiring.

We get as much from her as she gets from us. She had a really tough situation and was dealing with a lot, but it was clear from the beginning that she had a different outlook.