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Dr. James Kelly speaks to a veteran during the TBI conference

Making The Invisible Visible

Some 400,000 service members have sustained a traumatic brain injury since 2000, according to the Department of Defense.

Despite that, TBI remained an “invisible” injury, one that veterans were reluctant to speak about and one that was difficult to diagnose.

A conference held Friday at Carle Hospital and sponsored by the University of Illinois’ College of Applied Health Sciences aims to address that.

The event, titled “Making The Invisible Visible: A Dialogue on Veteran Traumatic Brain Injury,” brought together medical professionals, researchers, caregivers and veterans in an effort to bring to light the complexity of TBI and advance both research and services designed to enhance the well-being and quality of life for veterans and their caregivers.

The 13 speakers who gave presentations included Marine Corps veteran Justin Constantine, who sustained a TBI when he was shot by a sniper in 2006 in Iraq.

"I'm excited to come to this event because this is a big focus there,” Constantine said prior to the event. “And also so I can share my story, I can share techniques that have worked for me to help other veterans and other civilians, frankly, who had some of the same challenges ... also to talk about employment and things that my company is doing related to veteran employment and really different ways to push forward after a deployment, or after life in the military, or after a traumatic experience.”

Jeni Hunniecutt, a visiting research specialist at the Chez Veterans Center and one of the organizers of the event, said, “we’re starting the conversation.”

“I really think it's bridging the research with the services and the programs and the care that's offered kind of at the ground level,” Hunniecutt said recently on WILL radio. “When we saw the statistics, as I just mentioned, about how prevalent it was, we saw an opportunity to try and do something about it. We're hopeful, but we're also trying to be realistic ... there hasn't been a lot of progress and we're just trying to do what we can to help the problem.”

Other speakers included

  • Dr. James Kelly, executive director of the Marcus Institute for Brain Health and professor of neurology at the University of Colorado School of Medicine. Kelly served as an advisor to President George W. Bush on traumatic brain injuries.
  • Sami Anderson, a lawyer and wife of Garrett Anderson of the Disability Resources & Educational Services, spoke about the role of a caregiver.
  • Julie Fitzgerald-Smith, a neuropsychologist at the VA Illiana Health Care System
  • Dr. Jerrad Zimmerman, othorpedics and sports medicine at Carle
  • Dr. Kevin Teal, a neurosurgeon at Carle
  • Dr. Graham Huesmann, epileptologist at Carle
  • Jake Zweig, director of man development for Illinois Football
  • Andrew Webb, director of High Field Imaging Center at Carle
  • Dr. Paul Arnold, neurosurgeon at Carle
  • Aron Barbey, professor of psychology, neuroscience and bioengineering at Illinois
  • Ashley Dyke of Disability Resources & Educational Services, spoke about the role of a caregiver.
  • Sandraluz Lara-Cinisomo, assistant professor in Kinesiology and Community Health at Illinois
  • Philicia Deckard, executive director, Brain Injury Association of Illinois

For more about the event, listen to this radio appearance by Jeni Hunniecutt and Aaron Anderson from the 21st Show on WILL.

Click here to see the full transcript.

Jeni-Aaron-21st Show [MUSIC PLAYING]

BRIAN MOLINE: Welcome back to The 21st. I'm Brian Moline. The US has been at war for nearly all of this century with the invasions of both Afghanistan and Iraq. An analysis by the Rand Corporation shows that more than 2.7 million service members have been deployed in these two wars since 2001.

Combat is, of course, extremely dangerous. And one of the most common hardships that service members face is Traumatic Brain Injury, or TBI. The Department of Defense says hundreds of thousands of service members have suffered a TBI in Iraq and Afghanistan. But even though so many people have these injuries, there are still significant challenges when it comes to diagnosing and treating TBI.

Jeni Hunniecutt is a visiting research specialist at the University of Illinois Chez Veterans Center. She also served in the Virginia Army National Guard from 2008 to 2014. And Aaron Anderson is a postdoctoral fellow at the U of I's Beckman Institute and Carle Foundation Hospital. Aaron and Jeni, welcome to The 21st.

JENI HUNNIECUTT: Thank you. Thanks for having us.

AARON ANDERSON: Thank you for having us.

BRIAN MOLINE: Jeni, let's start with some of the basics here. What is traumatic brain injury? And does it describe one condition or a wide range of things?

JENI HUNNIECUTT: Yeah. I think I'll let Aaron jump in here as well. But TBI is considered the signature wound for the post 9/11 generation of veterans. What's unique about it to this generation is we've advanced equipment and protection gear. So a lot more people are sustaining injuries that they did not necessarily survive in the past-- so a lot of blast injuries, things like roadside bombs, those sorts of things. And in terms of the injury itself and what some of those symptoms might look like, do you want to jump in there, Aaron?

AARON ANDERSON: Yeah. So unfortunately, from a clinical perspective and a research perspective, it's a very difficult problem, because it is so varied and it's different for every person. And that has been a challenge in a lot of the research studies that have been done and for clinicians, is that it affects people so differently. And that's the greatest challenge of doing something about it.

BRIAN MOLINE: Sure. Jeni, in addition to your role at the U of I, you also served in the Virginia Army National Guard for six years. Did you know people who were deployed and suffered from TBI? Are there many, any specific stories maybe that come to mind there?

JENI HUNNIECUTT: Yeah, absolutely. It's a common injury for this generation, like I said. It's hard to kind of, I think, really know, right? That's the nature of it being invisible. So a lot of people, I think, maybe experience that injury but really didn't even know what was going on.

I think a lot of the symptoms parallel with post-traumatic stress disorder. So there can be misdiagnosis in terms of really what's going on. But when it comes to presentation, things like memory loss, there can be comorbidities around depression, anxiety, those sorts of psychological effects of the injury.

BRIAN MOLINE: Now, I wanted to back up and just touch on something else that you said in your previous answer there. You mentioned that advanced technology really is helping more people survive. So in years past, maybe someone would have unfortunately died from this. But instead now, they have a TBI. Is that right, Aaron?

AARON ANDERSON: So a lot of these survivings come from changes in the medical care that they receive on the battlefield. So they are a very-- the DoD is very practical, Department of Defense. And they have changed a lot of their strategies around both protection, but also response to things like a roadside bomb.

And they have increased the survival rate significantly over the last decade or so we've been at war. But what lingers beyond that, it tends to be these brain injuries, because they don't have a lot that they can do for them. So those things tend to be unresolved because of their invisibility.

BRIAN MOLINE: Sure. With that in mind, Aaron, the Department of Defense estimates about 400,000 service members have suffered TBIs from 2000 to 2018. Of course, during that time, we mentioned the US invaded both Iraq and Afghanistan. Does that number represent a big increase from what we saw in years past?

AARON ANDERSON: I think mostly there was an awareness before. Whether there was an increase or not, that's always difficult to understand from a statistics perspective. But there's definitely been a larger awareness of understanding it because of both inside the DoD and outside in sports, where we've seen increase also in awareness.

BRIAN MOLINE: Sure. I'm curious then, Jeni, what are some of the most common combat circumstances under which someone might suffer a traumatic brain injury?

JENI HUNNIECUTT: It actually happens in training more often than we would think. Particularly people that are in artillery, using weapons a lot in training environments, the effect of that can impact the brain in ways that we really don't know yet. In terms of combat situations, IEDs, so inordinate explosive devices, which are the roadside bombs.

And it's-- in terms of sustaining and equipment and technologies that we have today that we really didn't have in previous wars, things like up-armored vehicles-- so hitting a bomb like this, but the vehicle is still technically being intact. So people inside of the vehicle surviving but still having the blast effect of that, that combat experience.

BRIAN MOLINE: Let's talk about some of the symptoms. Aaron, I'll go to you for this. What are some of the symptoms of TBI? And how are they different from maybe just what we might sustain with a concussion?

AARON ANDERSON: Oh, they're very similar in a lot of ways, but they may be more severe, because the injury tends to be stronger than in standard concussions that you wouldn't see in the military. And they can have headaches as a simple one. They may be short lived or they may be persistent or ongoing. They can also be simple cognitive impairments, just a sense of foggy feeling and not yourself.

And that unfortunately is vague, but that tends to be the problem with it. And then it can be much worse. So you can actually-- if it's severe enough and there's secondary damage, you can also have other diseases that come along with it, like epilepsy. So people can have lifelong epilepsy from a TBI. It's kind of the most-- one of the most extreme cases.

BRIAN MOLINE: So Jeni, is TBI often diagnosed and treated during deployment? Or does it often stay untreated even after a service member returns home?

JENI HUNNIECUTT: Yeah, that's a good question. And I think it's definitely subjective. Like Aaron mentioned, we have better battle-side medical care now. But I think that it's definitely common and anectdotally have definitely heard a lot of stories from people I've served with or people I know that served that experience it in theater, in combat, but really didn't have a diagnosis for months, maybe even years after the experience happened.

BRIAN MOLINE: What do you think maybe some of the reasons are that it stays untreated for so long?

JENI HUNNIECUTT: I would say that really the science we've not caught up yet to it in terms of especially at a systems level. So things like impacting the VA health care system, is the largest health care system in the country, in terms of how are we really accurately diagnosing it and what are the state-of-the-art advanced technologies that we have available. And are they available to everybody? I know there's the issue with rural veteran health care. So where people are at really matters when it comes to the care that they're getting.

BRIAN MOLINE: Sure. And Aaron, did you have anything you want to add on that particular topic?

AARON ANDERSON: Yeah. So also, the technology of understanding when something is injured or not is difficult. So my background is in MRI. And they're very expensive, large, heavy things that don't travel well to a battlefield. But even things like concussion assessments that they use in sports are very portable, but they're not necessarily very effective at diagnosing concussions, whether you're on the battlefield or you're on the sports field.

BRIAN MOLINE: Sure. And Aaron, staying on that line, Jeni mentioned the VA and maybe some unevenness in care across the system. In general, do you think that right now veterans have enough resources to deal with TBI working through the VA system?

AARON ANDERSON: No. I think that it's they probably don't have the care that they need, but I think that that's true for anybody with concussions. I think that there's unique problems at the VA. But I think that there's just really general problems across the health care system and their ability to access and diagnose and treat it.

There are a handful of specialized places around the country, including the keynote for our event tomorrow, Dr. James Kelly, who heads up the Marcus Institute for Brain Health. And they have a very different approach to it, but it is unique. And it's varied. It's depending on where you are and your access. And that can be difficult for veterans.

BRIAN MOLINE: We'll get to that specific event here in just a minute. Definitely want to talk about that. But Jeni, we certainly know that veterans who come back after being deployed sometimes have a hard time readjusting to civilian life. How does having TBI make that process even harder?

JENI HUNNIECUTT: Well, it's coping with an injury, and it's coping with an invisible injury at that. So I think-- A lot of times, I speak to this almost like a hierarchy of veteran identity. And it's the visible wounds that when it comes to really recognition of service, embodying veteran identity that that tends to be noticed the most, which makes sense, right? They're visible.

Though when it comes to the invisible injuries and things that people are carrying with them out of service, I think it's much harder to figure out how to really integrate that new sense of self and that identity after service and into the civilian sector. And in how it's communicated with other people, I think raises additional challenges.

BRIAN MOLINE: Sure. And to the event on Friday at Carle in Urbana, we talked a little bit about it, Making the Invisible Visible, a Dialogue on Traumatic Brain Injury, Aaron, I'll ask you this. What are you hoping that people are able to get out of the event on Friday?

AARON ANDERSON: There's multiple levels of awareness and coming together on an important problem. So that shows up in the stakeholders that we have that are sponsoring the event. And that includes the Chez Veterans Center as the main sponsor, but then the Interdisciplinary Health Sciences Institute on campus, and the Beckman Institute for Advanced Science and Technology, as well as Carle Foundation Hospital.

And because it is such a complex problem, like we've discussed, it requires a lot of people to come together and understand it from each direction. So we'll have both researchers from campus there who are interested in solving the challenges with TBI, including clinicians at the hospital and other providers, as well as veterans and caregivers. So we're trying to bring everybody to the table to try and understand this and see what we can do uniquely within our community.

BRIAN MOLINE: Sure. And as we-- I think we've kind of identified the problem here. And as we look at its solutions to helping veterans cope with TBI a bit better, Jeni, where do you think we need to go from here? What are some of the possible solutions just to make things better from the veterans who come back with TBI?

JENI HUNNIECUTT: Yeah. So I really think it's bridging the research with the services and the programs and the care that's offered kind of at the ground level. And so we're hoping and planning that this event is, we're starting the dialogue, we're starting the conversation, but it's a big networking opportunity as well. We're bringing people together, stakeholders from across the state and the country, even some of our keynotes to really-- it would be ideal to create almost like a think tank, where we have all these experts who know about this area are coming together, creating new initiatives.

I know, here on campus, we will continue some of the projects that we have already started before this event. So we do have some research projects going. We are forming what we're calling a veteran engagement team that will be a team almost like an advisory group of veterans that have TBI and caregivers that are going to help inform the development of research on this campus around this area.

BRIAN MOLINE: Sure. And Aaron, how much better have we gotten at this? How much better have we gotten to diagnosing and treating TBI to this point?

AARON ANDERSON: Unfortunately, we haven't made a lot of progress. We have done certain things, and people have put a lot of time and effort and money into it. But if you look at something, one of the comorbidities of TBI, where it's post-traumatic epilepsy, and if you look at the statistics, over the last 100-plus years, the rate at which people develop epilepsy from TBI has basically stayed constant, between 20% to 30%.

And that is striking for a number of reasons, including the fact that warfighting has changed dramatically in the last 100 years-- as we've talked about different protection mechanisms but also the type of war and how we engage in it. But we haven't really understood why the injury does what it does, and what results are, and what we can do about it.

BRIAN MOLINE: A question for both you. And I'll start with Jeni. But how did you get interested in this topic personally? And why is it so important to you? Jeni, we'll start with you.

JENI HUNNIECUTT: Yeah. So generally, my interests and my commitment to the work I do lies with veterans in this community, as somebody that served myself. And actually ironically, I think this whole thing started with collaboration between Aaron and I. And so he's working in the brain health space on campus. I have been working to facilitate the advancement of research with veterans across campus.

And so about a year ago, we started thinking about initiatives. Because TBI is the signature wound for this generation, it's at the forefront. So when it comes to thinking about what are the most pressing important issues for this community and this population, TBI is number one, I would say.

BRIAN MOLINE: Sure. And Aaron, how about you?

AARON ANDERSON: Yeah. So I am mentored by in clinical research by Dr. Graham Huesmann at the Carle Foundation Hospital. And he's an epileptologist. And we had worked for a while with an imaging technology that I helped develop. And we saw some successes in epilepsy, a different type of epilepsy.

And we were looking for other unmet needs. And when we saw the statistics, as I just mentioned, about how prevalent it was, we saw an opportunity to try and do something about it. We hope-- We're hopeful, but we're also trying to be realistic that we have-- there hasn't been a lot of progress and we're just trying to do what we can to help the problem.

BRIAN MOLINE: Sure. Jeni, we've had previous conversations on this show about mental health, how it's important to try and talk about these problems in the open instead of keeping it in. How much is that part of this conversation on TBI? Is there a stigma against admitting that you might have this type of injury?

JENI HUNNIECUTT: I would say yes, yes there is. I think particularly because of the comorbidities, PTSD in particular weighs a definite heavy stigma. I think-- I suspect because TBI there is a physical nature to it in the brain maybe is less stigmatized than thinking about PTSD in isolation. But the two are not mutually exclusive. And so I think it's important to think about the mental and behavioral health implications of an injury like this, and how we're treating it, and how we are opening the table for a conversation about it.

BRIAN MOLINE: Jeni Hunniecutt is a visiting research specialist with the University of Illinois's Chez research center. And Aaron Anderson is a postdoc with Carle and the U of I. Both of them are part of an event this coming Friday at Carle in Urbana on this very topic. Again, it's called Making the Invisible Visible, a Dialogue on Traumatic Injury. We'll have details on our website. Jeni, Aaron, thank you so much for being here today.

JENI HUNNIECUTT: Yeah, thank you.

AARON ANDERSON: Thank you.

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