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Patient Story - Zoe’s Traumatic Brain Injury

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Patient Story - Zoe’s Traumatic Brain Injury

Jun 23, 2022

More than 2 million Americans experience a brain injury each year. Some result in relatively short-term changes in day to day function, while others can lead to long-term challenges or disability. Zoe experienced a traumatic brain injury after a skiing accident. For the past year she’s be working hard to get her life back. The Scope has an in-depth discussion with Zoe to share her journey to recovery and speaks with her neurosurgeon, Ramesh Grandhi, MD, MS, to better understand the medical side of a brain injury. Learn more about traumatic brain injury as well as the services offered through the brain injury program at Craig. H. Nielsen Rehabilitation Hospital.

Episode Transcript

This content was originally created for audio. Some elements such as tone, sound effects, and music can be hard to translate to text. As such, the following is a summary of the episode and has been edited for clarity. For the full experience, we encourage you to subscribe and listen.

Interviewer: According to the Centers for Disease Control and Prevention, more than two million Americans experience a brain injury each year. While some of these injuries result in relatively short-term impact on a day-to-day function, others can lead to long-term challenges or even a permanent disability.

Today, we'll be speaking with Zoe, a young woman who experienced a traumatic brain injury after an accident and the long journey of her recovery and the daily experience of overcoming the long-term challenges of life after an accident like this.

And to help us better understand the medical side of a traumatic brain injury, joining us is associate professor of neurosurgery at University of Utah Health, Dr. Ramesh Grandhi, the doctor who helped stabilize Zoe after her accident.

Zoe, why don't we start with what kind of led to your traumatic brain injury in the first place? What exactly happened?

Zoe: Yeah. Well, interesting story. I had just moved to Salt Lake City in August of 2020, and this occurred . . . or rather, my accident occurred December 5, 2020. So I had just shy of five months in the state, really.

So I hadn't experienced a lot, but a friend and I really wanted to ski together. I bought a season pass at Alta, was really excited to get up there. And it was day one, in fact, of the ski season that this happened. So really did not get any other skiing in, obviously, but this was day one.

Yeah, I mean, I don't remember a whole lot about the day itself. I have spotty memories of the drive up to Alta, getting to Alta. I actually have some spotty memories of being on the lift up to the first run. After that, I don't remember anything. I remember a bit of skiing, and that's really about it in terms of the day.

And then subsequently, upon waking up, I have absolutely no memory of the remainder of December. My memory is really spotty from about Thanksgiving up to December 5th. So Thanksgiving, I would say, is the last clear memory that I have and everything else is kind of spotty. It appears in my head almost as if I made it all up.

I've had to ask a lot of people, especially family members, "Did this really happen? Can you describe this thing to me or remind me who was at Thanksgiving again?" I never would have guessed something like this when I first started skiing with my dad 10-plus years ago.

And I was maybe 500 yards behind several of my friends, so I was alone during the actual collision. I ran into this group of trees that sat right in the middle of the run that I was on at Alta.

In this tree well, it was icy. I slipped on the snow evidently and collided with some trees in the tree well. What I would assume happened at that point is I was knocked unconscious by the collision and then fell and was hidden by this tree well and this group of trees. And then because I wasn't found until about four hours later, I had become buried or covered by snow by people skiing by, obviously.

Interviewer: Sure. So you're spotty memory-wise from Thanksgiving to . . . When did you start to remember things again?

Zoe: Right. So really, my lucidity, I would say, started to come back right around January 6th, 7th, 8th, right in that area. This is purely what I was told, is that I woke up somewhere mid to end of December. The rest of December went by. I was then transferred to a long-term care facility outside of Salt Lake City. And right around that, again, 6th, 7th, 8th of January is when I have memories that I'm able to go back on and say, "Oh, yeah, that was right in the beginning of January." Before that, though, I have no memories.

Interviewer: Wow. So, Dr. Grandhi, I want to go to you at this point. When did Zoe come into the care of you, your team, the University of Utah Hospital?

Dr. Grandhi: As I recall it, I didn't find out about Zoe until Sunday morning first thing. I know that she presented as a transfer to our hospital, and clearly, she had traumatic injuries. And the first principle of what we do is just stabilize the patient. The trauma surgeons and a number of other services are super important and are our partners in making sure that a patient is appropriately stabilized.

And then my partner was actually on call and received the first call about her. He then got in touch with me. We do a really nice job within our department about communicating about patients with traumatic brain injuries, and specifically, patients with severe traumatic brain injuries.

So I remember that Sunday morning very well because she was downstairs in our surgical ICU. I went and saw her and just looked at her images, and then went out and talked to her dad who was sitting in the waiting room all by himself.

I remember the exact seat he was seated in early on that Sunday morning, probably around 8:00 a.m. or 9:00 a.m. And he was just by himself. I just walked up to him and told him what my assessment was of the situation based on looking at her head CT and things like that.

And at that point, it was just me trying to tell him that we're going to do our best to take care of her, that she presented with what we call a severe traumatic brain injury, and what the principles of managing patients with that are, and also, honestly, giving him hope.

Interviewer: When we talk about traumatic brain injury, is it a lot of skiing injuries, sports injuries? What is the most common type of traumatic brain injury?

Dr. Grandhi: Traumatic brain injury is a significant burden in the Western world. It's the number one cause of death amongst young folks in the Western world.

Traumatic brain injury falls into three buckets: severe traumatic brain injury, moderate traumatic brain injury, and mild traumatic brain injury. And oftentimes, patients with mild traumatic brain injuries don't even come into the hospital. We call it a concussion. And oftentimes, a patient may stay at home after hitting their head, or being involved in a sports injury, or a motor vehicle collision, or falling and hitting their head.

The burden of traumatic brain injury in the United States today is about 2.5 million patients per year. So many patients don't even come into the hospital. Many patients are discharged from the ER.

Interviewer: Zoe and her accident, of those three buckets, what did hers fall into, and why?

Dr. Grandhi: Zoe had a severe traumatic brain injury. And the way we diagnose severe traumatic brain injury is quite simple. We just gauge it in terms of what their neurologic exam is when they come in. So are they able to open their eyes? Are they able to speak? Are they able to follow commands?

Interviewer: And Zoe was unable to do those things?

Dr. Grandhi: Correct.

Interviewer: Wow. Zoe, do you remember any pieces or parts of the story? How did you feel when you were first, I guess, coming out of it?

Zoe: Yeah. Again, like I said before, the first memories I have are really in the long-term care facility that I was transferred to after leaving The U. I think it was sort of a slow realization.

And then since then, I would say I've noticed things that are sort of side effects or fallouts from having a severe traumatic brain injury: getting frustrated much more easily, being able to jump to anger much more easily, having very little patience, amongst many others. So it was very much a slow realization and slow rollout. And then still to this day, new things come up.

So it was much more slow. It wasn't similar to if you broke your arm and someone said, "Oh, you broke your arm," and then they casted it up right then and there. It was much more prolonged than that and slow realization.

My initial thought, honestly, was because I was awake and lucid and conscious, "Oh, my brain is fine. Well, everything is good. I can speak. I can see. I can hear. I can eat. I have my motor functions." And so, initially, I didn't think too much about the effects on my brain, and that did come up much later and still continues to this day.

Interviewer: Dr. Grandhi, when it comes to treatment of a case like Zoe, what was done to help Zoe get from the accident to where she was stabilized and in, I guess, a longer-term facility to kind of monitor her?

Dr. Grandhi: Well, I think we need to kind of dial it back a little bit to understand the management principles of patients with severe traumatic brain injury. And it starts, honestly, in the pre-hospital setting in which those who are on the first line understand how to manage a person, particularly with a pathology as significant as severe traumatic brain injury.

So first things first, getting the patient stabilized in the field, making sure that people are very cognizant of taking care of the patient, immobilizing their neck. Again, we don't know if a patient has had an injury to the cervical spine. Zoe clearly hit trees, so she could have very easily had damage to her neck, to the bones of her neck, spinal cord, etc. So getting a patient stabilized at the point of injury, then making a decision of where the patient goes.

There is data to show improved outcomes in patients who have a severe traumatic brain injury who are taken to Level 1 trauma centers. So understanding where to send the patient when the patient comes in.

Again, we have a huge bevy of services that are there in the ER, in the trauma bay awaiting a patient, because there's pre-hospital notification. And so if a person is coming in as a Level 1 trauma to a Level 1 trauma center, we do have orthopedics right there. Neurosurgery is right there in the trauma bay. Obviously, trauma surgery, the ER doctors, a number of different services and specialties are there awaiting the patient.

Airway management is important, worrying about circulation, blood pressure, ensuring that there's no intra-abdominal injuries. After that, there are a lot of scans that are ordered inclusive of CT scans that are literally performed head to toe to make sure that we're not missing significant injuries that need actionable treatment, such as rushing a patient up to the operating room for an intra-abdominal injury.

That being said, once that is done and there's nothing imminent that needs to be treated emergently, the patient is generally taken up to the ICU. And in Zoe's case and a patient with a severe traumatic brain injury, they're ventilated, and then there's a lot of management that occurs then predicated on blood pressure management, good oxygenation for the patient.

And for patients with severe traumatic brain injury, when we know a patient has a severe traumatic brain injury, we place particular monitors in the patient's brain because we're obligated to make sure that we have good control of intracranial pressure. So we want to make sure that we know what a patient's intracranial pressure is, and we need to keep it below certain thresholds.

We clearly know what the patient's brain perfusion is in terms of what's the state of blood pressure to brain tissue. So we monitor a patient's systemic blood pressure, their body's blood pressure well, and have to get the brain perfusion pressure in a particular range.

That's a quick summation of the management principles of a patient with severe traumatic brain injury. Not every patient requires a big-time operation and removing part of the skull or sucking out blood, but when we do place brain monitors, we do have to drill a small hole in people's skull to place these monitors. We have to remember that brain injury comes in many different flavors, even severe traumatic brain injuries.

Interviewer: So you just keep an eye on all the things that are going on with your monitors and everything to see whether or not there's injury?

Dr. Gandhi: Absolutely. And we use CAT scans liberally to help us understand more about the evolution of the brain injury. Zoe did have blood in her head, no question about it, but we did not feel that this blood would require us to take her to the operating room for an emergent surgery to remove the blood.

Interviewer: It's my understanding that Zoe then was a part of a study dealing with neuromonitoring. So for someone who's listening right now, what exactly is neuromonitoring, and why is it so important that we do research with it?

Dr. Gandhi: Whenever someone is classified as having a severe traumatic brain injury, we know from years of research and guidelines and a lot of work from really experienced, savvy, thoughtful leaders in the field that patients should get particular things monitored.

As I had said, we want to get invasive arterial blood pressure monitoring so that we can get a good second-to-second, moment-to-moment gauge of what a person's blood pressure is not using one of those expandable blood pressure cuffs. So this is something that allows us to know on a moment-to-moment basis what a person's blood pressure is doing.

We also ensure that the patient has adequate ventilation using a breathing tube. We study their intracranial pressure via an intracranial pressure monitor.

Finally, one of the things that has been important recently in the care of patients with severe traumatic brain injuries is the concept of whether brain tissue oxygenation can help guide therapy for a patient with a severe traumatic brain injury.

So historically, many university centers across the world, many experienced Level 1trauma centers have been using brain tissue oxygenation monitoring, basically almost as though you had a pulse oximeter of brain tissue. Many folks around the world have used brain tissue oxygenation monitoring as another way to help manage their patients with severe traumatic brain injury.

Here at the University of Utah and also many sites throughout this country and across the world in a separate study have decided to do a randomized controlled trial on this and understanding whether it will bear out in a huge patient population of improving outcomes. And Zoe was enrolled in that trial, and the trial is called BOOST-3.

Interviewer: So what exactly is BOOST-3 looking to do?

Dr. Grandhi: What we're looking for in the BOOST-3 trial is to determine whether using brain tissue oxygenation monitoring in the care of patients with severe traumatic brain injury improves outcomes at six months.

This is over and above using traditional monitoring techniques such as intracranial pressure monitoring and cerebral perfusion pressure monitoring that are already used commonly as part of guidelines that have been established in taking care of patients like Zoe.

Interviewer: So, Zoe, we've been talking a lot about kind of the medical side of things. I want to go back to you. What was it like when you first had Dr. Grandhi or any of the other specialists kind of explain the condition to you and what was going to be expected moving forward?

Zoe: I think in all the research that I've done and the people around me have done and then my discussions with Dr. Grandhi initially and shortly thereafter, and from what I gather from all of that, is that it's largely unexpected. The results and the things that come of it are known and yet unknown, right? It's things that they know come from a severe traumatic brain injury and then there are things that you don't really know will come up until they come up and until you experience them.

So from what I've been able to dissect from this injury is kind of pick apart, or notice rather, the moments in my own life where the thought comes into my head saying, "No, this isn't really you. This isn't really the Zoe that has made it to this point." "This is the TBI speaking," I guess, for lack of a better term or phrase.

An example would be if I'm feeling really, really agitated one day or even one hour and then the next hour I'm back to feeling normal again. So it's really quite a rollercoaster, I would say.

Interviewer: But what did it feel like to kind of hear that? I mean, as an outsider, as someone who's never experienced this kind of thing, that sounds kind of scary to me.

Zoe: Well, I would say more jarring than frightening. As the patient or as the person with a severe TBI, you don't necessarily . . . or I didn't, at least, necessarily believe the things that were being told to me. Not that I would think, "Oh, Dr. Grandhi is a liar," but I didn't necessarily believe it until those things started to show up for me in my own life later on and as time went on.

So months later, it's coming up on a year, so a full year later, I notice things that they told me initially that I might feel or that may come up. And at the time, I was thinking, "Well, I feel fine now, so we're good. We're all good here. Have a nice day." So it wasn't until up to this point that I think, "Oh, okay. I see what they mean by this progression and regression of things that may come and go," and things that I might feel that I didn't think I would feel at the time.

So it was definitely helpful to hear that then, and thinking about it now, "Oh, okay. They were right all along. They know what they're talking about."

Dr. Grandhi: I think it's really important to understand that while we as physicians, particularly as neurosurgeons who take care of patients with severe traumatic brain injury, I look at Zoe, and we raise our hands and we run a victory lap saying that she is a success.

And first things first is just in the acute setting, there's more research coming out that shows that if you are able to get a patient through the acute brain injury setting and manage them correctly and take care of them, we should not be nihilistic about where they will be one year later.

There's new research using big data sets that show that patients such as Zoe who come in with severe traumatic brain injury can have favorable outcomes at one year. Part of this data set also shows that 20% of patients can perhaps have no disability at one year.

But that being said, Zoe's experience alludes to the fact that we cannot forget about our patients. They still sometimes experience some sequalae that are hard to just kind of put a finger on. Like Zoe talks about, just agitation, maybe irritability, maybe memory issues.

So this is a process, an evolution, and it's really important for us to be able to support our patients, get them the correct resources, and really kind of steer them and continue to shepherd them through the process, which may take many more years.

Again, the concept of neuromonitoring for patients with traumatic brain injury only pertains to patients with severe traumatic brain injury, patients who are in a coma, patients who come into a hospital in a comatose state.

And I think we're going to learn a lot through this study as well as over the next years of how to really target various treatment thresholds and really tailor a patient's care to perhaps the type of pathology that they're coming in with.

So this is really important to patients with severe traumatic brain injury, but for the audience out there who is interested in traumatic brain injury in general, because most of the patients who experience a traumatic brain injury don't come in like Zoe in a coma, we're learning a lot about traumatic brain injury in general.

We're learning that there are so many different components to living with a traumatic brain injury. We are understanding that there are perhaps new ways of diagnosing patients and understanding what's called biomarkers and their role and understanding whether they're different symptoms, sequalae, or phenotypes that people experience after a traumatic brain injury.

Finally, it's really, again, very important to support our patients because it's not just the acute recovery stage. One of the people who trained me told me the biggest misnomer in patients who come in with mild traumatic brain injury, which is sometimes called a concussion, is there's nothing mild about it if you experience headaches two months after the fact, or if you have problems with staring at your computer screen if you're a person who works on computers and have eye strain after that, or have problems with balance. There's nothing mild about it.

And now the question is, "How can we support our patients better and get them the needed resources they need to get back on their feet and get their life back in order?"

Interviewer: So, Zoe, you're 25 now. It's been a year since the initial incident. How have you felt along the process? And how do you mark your own success and, I guess, healing from this particular incident?

Zoe: It actually took quite a while for me to recognize my own success, my own progress. It's really been just recently, actually, that I've been able to think to myself, "Oh, okay. You can actually do that thing now that you weren't able to do three months ago, four months ago."

It's more so just the ability to recognize those things. And I wasn't able to recognize those things previously. So it's been really difficult to measure my own progress based on what that looks like or what that has looked like in the past year.

I mean, highs, overall, I would say the ability to remember. Honestly, my short-term memory was completely restarted, completely obliterated in the beginning, and I wasn't able to hold a memory for several minutes. I would forget the thing before. So my working memory and my short-term memory have improved significantly.

Luckily, nothing really ever happened to my long-term memory, so I was able to remember years past. I could tell you where exactly I was and who I was with, especially right in the early beginning.

One of the most difficult things, but probably does not top the list, that I've experienced from the fallout, if you will, is the changing of relationships in my life. Friendships and various other things that have been really difficult to not only maintain, but to offer my lived experience as it is and as I see it and as I experience it. It's extremely difficult to explain the mindset that I have and where my brain is at on any given day.

And luckily, some of them have had extreme understanding and extreme patience with me. And that's really all I ask of the people in my life now, is, "Please be patient with me and my progress and the things you likely don't see on a day-to-day basis." On hour-by-hour basis even.

I've told the people closest to me, "This could be a years-long journey process, if you will, for my mental state, so the patience is so appreciated."

And then the highs . . . To be quite frank, I think the highs for me personally, they've been recognized by the people in my life for a while now, for the last year, but I personally have not been able to see or really process or digest those highs.

So it's really just been very recent in the last few months that I've been able to look at myself and say, "Wow, you can do that now after being completely immobile for nearly two months," or, "Wow, you can move that way again," or, "You can stretch that way again."

I used to and would eventually like to get back to very, very involved in hot yoga. I used to do hot yoga frequently. And before that, I was a gymnast and a dancer. So in the beginning, it was very excruciating for me to, say, not even touch my toes. And that was a huge blow more so to my ego than anything else, but a huge blow nonetheless.

And so I think the highs now are being able to recognize that, "Hey, I am able to touch my toes," and I stretch, and I exercise, and I do all these things every single day to better myself.

Initially, it was very much like, "Wow, you aren't able to do this? What happened?" And then it was up to a few months ago that I started telling myself, "No, you have to be much more patient to yourself, much more kind to yourself," than the completely and constant berating myself for why I'm not able to do something, or accomplish something, or say something in the way that I want to say it, etc.

Dr. Gandhi: I think that was just incredible to hear. As I said before, we run laps when we look at Zoe, but to hear her personal experience and understand that this is not over for her and understand what she goes through and also understand what defines us is the little things that make us who we are. Zoe touching her toes, doing hot yoga, it's incredible. It makes us really take a step back and understand this as a human experience, understand this as a personal experience.

The privilege of being able to be involved in Zoe's care and the care of others is not lost when you hear these things. The story of Zoe and patients like Zoe is not done in December 2021. It's an experience that she's going to live through and get through for the rest of her life.

She's sitting 10 feet away from me right now and her mom is right here as well. She's going to get there, and we just have to do everything we can to support her. She's just incredible. And to just hear Zoe, hear her voice come through in this experience is just profound for us. As many times as I've seen Zoe, I've never known these little things about Zoe, and it's amazing to hear.

Interviewer: To find out more about traumatic brain injury as well as the services offered through the brain injury program at the Craig H. Neilsen Rehabilitation Hospital, visit the link in the episode description.

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