Emerging horizons in TBI management: science, technology, and hope
Illustration by Colin Laurel
by Sanaphay Rattanavong
Many years ago, I briefly worked as a home health aide for a man we’ll call “John.” This was before smartphones took over our pockets, purses, and attention. Due to an accident, John suffered from the effects of a traumatic brain injury (TBI). Although I only spent a few hours a week at his house, performing whatever chores or tasks he needed (mainly cleaning and organizing), it was clear that John struggled greatly. His creative aspirations as a filmmaker were forever frustrated as he found himself reediting the same footage over and over. He took solace in fantasy: that the beautiful women in Asia he interacts with on the internet, and to whom he sends money, genuinely adore him and intend to pay a visit.
John was my first encounter with TBI and its consequences. He had his weekly doctor/therapist visit, sure. But there was this nagging feeling that more could have been done to help this man. When I met John, it was in the early 2000s — a time when scientific knowledge related to TBI could be said to be in its gestational period. Today, two decades later, we can say with some confidence that it’s at least in its infancy, with signs of potentially rapid growth bending the arc of the horizon.
The neuroscience of TBI
Colin Laurel
I spoke with an expert in the field, Dr. Sudhin Shah, a neuroscientist at Weill Cornell Medicine, to help me better understand TBI. Dr. Shah specializes in studying cognition and cognitive impairment after TBI in both adults and children, among other aspects of TBI. As an expert in TBI, she sees a societal disconnect between TBI’s impact and the attention it receives, noting that, "Even though TBI is so prevalent, I've been surprised by how little is being done to prevent one from happening." This may have to do with widespread misconceptions about TBI. Dr. Shah opines that “people think, oh, you get a TBI and may end up in a hospital, but then you get better and then you go home.” She notes that although this may, fortunately, be the case for most people, those with severe or even moderate injury “never return to their baseline,” that is, their old higher-functioning cognitive selves.
Consequently, Dr. Shah notes that mental health is known to be adversely affected by TBI, but the exact mechanisms are unclear. She explains that potential causes include biological changes in the brain due to injury, leading to symptoms or behavioral changes related to mental health. Additionally, the loss of function, such as the inability to work or social isolation resulting from the injury, can also impact mental health. Furthermore, individuals may struggle with functioning at their pre-injury levels, affecting impulse control and other cognitive abilities, which can lead to mental health issues. There is also a possibility of direct effects from the injury, like connectivity or functional loss in the brain. The complexity of these factors makes it challenging to separate their individual impacts, but Dr. Shah affirms that experts in the field recognize that TBI significantly affects mental health, an aspect that is often less acknowledged.
Therefore, the work of her and her colleagues has focused on measuring the impairment and then finding the biological correlates. This is important since a TBI can cause an observable decrease in certain areas of the brain — or even a signal loss: “You've lost connections between regions that you need to do this or that, or they're all there but they're just not functioning at the level that they would [normally].” She illustrates this point with the analogy of the uninjured brain when we “wake up in the morning and there's that sleep inertia and there's that period where you're just [barely] functioning and… people say, I need a cup of coffee before I can think… Thankfully, for most of us, a cup of coffee or getting up and walking does fix it. But you can imagine people who have brain injury may never be able to get past that.”
In addition, Dr. Shah and her colleagues are working on locating biomarkers of improvement to help tailor medical interventions, noting, "If you know there is something wrong and what [precisely] is wrong in the brain... it could inform what we do about it." To this point, she and her colleagues have worked to pinpoint following TBI and their pathophysiological relationships to, and differences from, normal aging. The research also shows how heterogeneous TBI is, in that no two cases are the same when it comes to impairments.
Although Dr. Shah’s focus is on hard science, I asked her about the role of smartphone apps and the like in the recovery from TBI. While she was careful to say that she hasn’t seen “any evidence that they actually change the trajectory for people who've had TBI,” much in the same way that she’d encourage people to read more, she sees the positive side of helping people stay more cognitively active, so that she thinks “there is a future in which you do some of that.”
Smart personalization
Smart personalization is where innovative smartphone applications may come into play and it is at the core of these apps. Based on user data, they can help create customized treatment plans, and inform recovery and management recommendations based on the severity of TBI and the specific symptoms of each user. This approach ensures that every individual receives the most effective and relevant support, aligning with and supplementing Dr. Shah's focus on identifying biological correlates and biomarkers for more targeted medical interventions.
In addition, these applications can also serve a dual purpose as part of recovery assistance and as valuable resources for research. By collecting data from users, they significantly contribute to studies on TBI, improving the understanding and treatment of this complex condition.
The growing importance of mobile apps in TBI recovery
With technology playing an increasingly critical role in rehabilitation, mobile apps have become crucial to managing and helping recovery from TBI, as it affects millions annually. In response to questions about how apps help people with TBI, the VA states: "VA provides a range of apps designed for patients with Traumatic Brain Injury to address symptoms such as headaches, concentration, anxiety, or sleep… Additionally, the VA is working on updating its Concussion Coach app, which helps patients manage symptoms associated with TBI. The app is expected to be re-released in spring 2024. For more information visit: App Store | VA Mobile.”
As highlighted by the National Institute of Neurological Disorders and Stroke (NINDS), TBI significantly affects cognitive, social, and emotional well-being. Some mobile apps might offer hope and practical solutions for TBI recovery, extending beyond traditional therapy and providing essential support to those affected by TBI, healthcare professionals, and caregivers.
Hope as acronym: can DBS reverse TBI?
It’s clear that the challenges in preventing and caring for TBI are significant. In fact, Dr. Shah laments the lack of public awareness on the topic, highlighting that TBI is a leading cause of death and disability worldwide. “And yet,” Shah says, “I think there is a missing — it's missing PR.”
Colin Laurel
Beyond public relations, Dr. Shah believes that individual stories play a crucial role: “When somebody who looks like me or talks like me says, ‘Listen, I did this silly thing of not wearing a helmet when I was biking,’" she retains that takeaway.
Of course, prevention and awareness can only take us so far. Dr. Shah notes that we must “live with TBI,” in the sense that we can’t simply stay home and refuse to live our lives. And even staying home will not save us: she notes that, on the other hand, most TBI in children occurs due to falls at home.
There is no magic bullet for TBI, and given the complexity of the condition, it is unlikely that we will be able to eradicate the condition the way we did with smallpox. Yet there are brave new remedies that bring much-needed hope: deep brain stimulation (DBS). A groundbreaking Phase 1 clinical trial, involving prestigious institutions like Weill Cornell Medicine, Stanford University, the Cleveland Clinic, Harvard Medical School, and the University of Utah, has made a significant breakthrough. Published in the journal Nature Medicine, this study demonstrates that DBS can notably improve cognition in individuals with chronic cognitive deficits following moderate to severe TBI.
Dr. Shah, commenting on this advancement, said: "Deep brain stimulation in TBI... these things are giving hope that maybe one day we will be able to have something [truly effective] for the brain."
The trial involved five individuals who had suffered life-altering cognitive deficits from TBIs years prior. They underwent thalamus-targeting DBS for 12 hours daily. Interestingly, after three months, all participants showed improvements in executive function (15-55% improvement), attention, and other cognitive abilities. They also reported better quality of life, including enhanced social participation and work ability.
The methodology of the trial was innovative. DBS targeted the central thalamus, a crucial region for cognitive functions, acting as a “cognitive pacemaker” to reactivate cognitive circuits. Importantly, the study met its safety and efficacy goals, with participants showing minimal side effects and exceeding the preset threshold for clinically significant improvement.
The implications of this study are profound. It offers new hope for individuals suffering from long-term cognitive impairments due to TBI, challenging the traditional belief that such deficits are irreversible. The success of this trial paves the way for larger Phase 2 and Phase 3 trials, aiming to optimize and confirm the safety and efficacy of treatment for a wider population of patients with TBI.
This research marks a significant advancement in TBI treatment, opening doors to potentially life-changing therapies for those affected by severe brain injuries. As Dr. Shah optimistically notes, these developments in deep brain stimulation, as well as various kinds of apps that might help support symptoms of TBI, are a beacon of hope, indicating a future where effective treatments for brain injuries are a reality.