Many UCSF providers talk about how their work benefits not just their own patients but all patients with a given condition. Do you agree?
Absolutely. The history of medicine is full of examples where we learn from our patients how the brain – and the whole body – works, sometimes through their suffering. It is a special and unique and important part of how we learn.
At UCSF, we continue to learn the most we can in a way that takes care of patients and serves our mission of discovery.
Tell me about the team working on Kimberly's case.
We have an amazing team of doctors, nurses, therapists.… Everyone brings different expertise, so some of my colleagues, like Dr. Garcia and Dr. Knowlton, specialize in the diagnosis and helping to figure out where the seizures are coming from. My expertise is in the surgery itself, making sure that it happens in a safe and effective manner. And a large team of nurses and therapists helps our patients get through the entire process.
Where were Kimberly's problems occurring?
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. The possible effects on our emotions and language are also unclear.
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 a general idea of where the seizures were coming from, but it was directly adjacent to areas that we knew were quite critical for her ability to talk. 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, of course, 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.
Did you discover something about the brain stem and emotions?
Absolutely. That's a part of the brain that we probably know the least about. The fact that the seizures from that part of her brain were so intimately associated with how she felt, there's just a complete dissociation.
Most of us have emotions in reaction to certain things – something we experience, see or eat, or even a fight. But in her case, the feelings would just come out of nowhere. For people who don't experience this, it's hard to imagine your emotions basically taking control of your brain through these uncontrolled seizures. It was very important to understand how that was working to guide her surgery safely and to get it under control.
It's amazing you were able to remove as much as you did, while maintaining her ability to have the normal everyday anxieties everyone does.
Emotions are obviously a really important part of who we are, and the goal wasn't to remove anxiety or her ability to have good or bad days. It was more about removing those kind of emotional changes that were directly related to the seizures she was having. Those are the ones that really bothered her.
After her surgery, Kimberly is now independent and able to do things like take public transportation on her own. 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. So it's really gratifying, because at the beginning of these journeys, we often don't know. That's what it's all about – for me at least.
It must be so important for patients like Kimberly to get their freedom back.
We think about that a lot. For a lot of our patients, seizures seriously affect their quality of life. Some of our patients can't leave home because it's not safe or they're losing consciousness, falling or blacking out while crossing the street – things most of us take for granted, like driving a car, for example. All of that equates to a pretty big restriction on their freedom to live normal lives.
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.
What are some of the UCSF team’s strengths?
A couple things help set us apart. Experience matters a lot. Our doctors and the rest of our team have such a wealth of knowledge in thinking about complex cases like this. We also have some of the best technology, which we have developed, so we know how to use it.
And the third thing is that we have a truly compassionate group of doctors. At the end of the day, that's what really matters.
Kimberly mentioned the personal connection she has with her team. How does that help with healing?
Patients have to be involved in their care for it to go well. It always goes better when it is collaborative. Having the surgical patient awake and collaborating with me is maybe kind of an extreme example of that, where in order to do that surgery effectively and safely, I had to have that communication and feedback. That was teamwork between Kimberly and the surgical team.
But it goes way beyond that. It's knowing that regardless of what happens, whether or not the surgery is successful, we are committed to taking care of someone. That's very special about the people I work with.