一天发作多达70次的突然剧烈发作，伴有剧烈的情绪波动, 严重的焦虑，甚至幻觉，迫使金伯利·巴里放弃了她在中国当年轻教师的冒险生活.
金伯利的UCSF团队发现，她的癫痫发作始于大脑的一个区域，距离她说话和移动四肢所需的脑组织只有几毫米, 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.
今天，金伯利几乎没有癫痫发作，能够独立工作和生活. Hear Kimberly and her UCSF team talk about her procedures, and read a Q&A to learn more of Kimberly's story.
“总是我和我的大脑，我们总是在战斗，”金伯利说她的癫痫. 有一天，她被紧急送往加州大学旧金山分校的急诊室，在那里她遇到了一组神经学家，他们将拯救她.
When you began having seizures, what were they like?
当我在2010年9月患上癫痫时，我每天发作30到40次. They would always start off with an odd taste, smell, hallucinations, auras. 它会从简单的部分发作开始，演变成复杂的部分发作，我经常会失去意识或意识.
我去了中国的多家十大赌博平台排行榜检查，但没有得到正确的诊断.
How were you finally diagnosed?
When I returned to the U.S., 我仍然没有得到正确的诊断，直到有一次我失去了意识，一辆救护车把我送到了当地的十大赌博平台排行榜. 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?
我(2014年)在对一种药物过敏后被带到加州大学旧金山分校 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. 加西亚说你需要做手术你住院接受术前评估. 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 通过手术切除[大脑的]脑岛区[癫痫发作的地方].
You were a candidate for resection. How did you feel after that first surgery?
The most interesting part was emotional. 我从手术中醒来，心想，好吧，我一定吃了一些很棒的止痛药. I feel great.
在我的一生中，直到第一次切除手术，我都无法控制自己的思想. 我记得有这些情绪——这些高潮和低谷——没有任何原因. 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.
虽然(手术后)我的认知能力恢复了，但我花了大约一天的时间才能够大声说话. 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. 我周围的人都能看到发生了什么事，而我无法阻止.
这比手术前更可怕，我可能会失去意识. 当你失去知觉时，你会醒来，身上有些瘀伤，但你没事. 当你醒着的时候，你无法控制自己，对我来说，这是最可怕的部分.
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?
通过立体脑电图，他们发现，是的，可以进一步切除左脑岛区域. However, there was another [seizure-causing] area that, if Dr. Chang had resected it, 会让我终生失去认知和语言能力吗.
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. 如果它感觉到癫痫活动，就会发出信号，试图阻止癫痫发作. 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. 饶给了我选择，作为病人，如果你想做什么改变，你有最终决定权.
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. 当我癫痫发作时，我是完全清醒和有意识的，我可以移动，甚至走路. 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.
我永远感激十大赌博平台排行榜们所做的一切，因为我的癫痫发作现在减少了，我的生活不再担心它们. And having this device, I know that I'm not dealing with epilepsy alone.
与加州大学旧金山分校的癫痫团队建立如此长期的合作关系是什么感觉?
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.
Kimberly's brain surgeon, Dr. Edward Chang, 讨论了她手术的复杂性，以及他的团队如何突破可能帮助她的极限.
What were some of the challenges of Kimberly's surgery?
我们发现金伯利的癫痫发作来自于她大脑中一个叫做脑岛的部分, one of the least understood parts of the brain. 它被额叶和颞叶覆盖，所以它的位置更深. 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.
这部分大脑的手术之所以如此复杂，是因为它被对其他相关功能至关重要的部分所包围. Just inside the insula, millimeters away, 连接大脑中控制我们移动胳膊和腿的部分的纤维是非常重要的吗. 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, 你是在大脑中一个不为人所知却又如此重要的区域进行手术吗?
在医学领域，很多时候，我们面对的情况不是黑白分明的. 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. 我认为最重要的是在手术过程中与她定期沟通, 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, 比如让她说出她在电脑屏幕上看到的物体的名字，或者重复单词. 但是最有用的信息是她每天使用的语言, 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, 关键是要知道——手术的每一分每一秒——她都很好.
她的癫痫发作还有一个非常有趣和重要的特征:它们会引起恐慌发作和严重的焦虑. Those were actually occurring during the surgery, which was challenging. 但这是很重要的信息——知道她仍然有这些症状——因为我们知道，直到这些症状停止，我们的手术才算结束.
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.
对于我们所看到的具有挑战性的案例，我们不能保证会有一个成功的结果. 我们唯一能承诺的是，我们将竭尽全力解决问题，并在技术方面利用我们所拥有的一切, compassion and dedication.
When you think of Kimberly, what do you think of?
I think of resilience. 我想到的是那些面对艰难险阻依然保持乐观和积极的人. 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.
