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 味道, 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.
你最后是怎么被诊断出来的?
当我回到美国时.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. 我几乎说不出一个完整的句子.
你是怎么去加州大学旧金山分校的?
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. 加西亚 成了我的癫痫十大赌博平台排行榜. I tried additional medications, but the seizures wouldn't stop. My cognition was so low that it was hard to have a job. 我很难真正过自己的生活.
2015年,博士. 加西亚说你需要做手术你住院接受术前评估. 你能描述一下你的经历吗?
They inserted a grid [before surgery] with 300 electrodes inside my skull. (神经外科十大赌博平台排行榜) Dr. 常 能进来解释一下吗, in terms that my 家庭 and I could understand, 他所看到的和可能发生的. The goal was to determine whether it was possible to 切除 通过手术切除[大脑的]脑岛区[癫痫发作的地方].
你是切除手术的候选人. 第一次手术后你感觉如何?
最有趣的部分是情感. 我从手术中醒来,心想,好吧,我一定吃了一些很棒的止痛药. 我感觉很棒.
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. 在中学, I was sitting in my backyard on our little porch swing, 我记得我哭着说, "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 切除ion surgery. 从那以后我再也没有遇到过这个问题.
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. 但在精神上,我没有消极情绪.
After that surgery, you had fewer seizures but those you had were still intense. 那是什么感觉??
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."
他们推荐了什么??
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. 张把它切除了, 会让我终生失去认知和语言能力吗.
Dr. 常 said, "Kimberly, because of that, we can't 切除 this area. 所以你是a的候选者 NeuroPace RNS 装置植入你的头骨." 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. 这是他们用的词: 开花. 当它这样的时候,我感觉不到. 我不知道它会爆炸.
The NeuroPace can be adjusted for better seizure control. 这是怎么回事??
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. 饶.
这种方式, 当我来赴约时, 他能看到我癫痫发作, he can look at what he sees and what he thinks would be the next, 进行任何更改的最佳选择. 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.
我有一份全职工作,一群朋友. 我旅行,我锻炼. 我有车,我开车. My life has gotten even better than it was before I got sick.
你还有癫痫发作吗?
也许,一个月最多五次.
My seizures have significantly reduced in frequency and intensity. (它们)最多持续两分钟. 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. 我癫痫发作的次数很多, 尤其是复杂的部分性癫痫, 第二天我觉得自己好像得了流感.
你一定松了一口气.
这是一个完全不同的十大赌博平台排行榜, and I'm amazingly grateful for all the support that I've had – from doctors, 家庭, 朋友. 人们没有放弃.
After the second surgery, I got back out into the social world. 我得让我的大脑愈合,对吧? 这并不容易. 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. 我走进去,感觉就像在家里一样. 我觉得他们就像我的家人.