Unanswered Questions & Areas For Future Research
The Veterans interviewed were asked what types of questions they had about their condition that they felt they could not find an answer to, areas where they wished they had more information, and/or where they thought future research was needed.
Parts of the brain impacted by TBI
Many said they wished that more was known about which parts of the brain were most affected and the links between where the injury occurred and the symptoms they are experiencing. Andrew said he was frustrated by the lack of consistency between doctors - with some saying “Oh, that’s bad,” and others saying “Oh that’s nothing” – and wanted to know more about how his brain works now. Others were discouraged and confused that brain scans still were not able to detect evidence of their injury, despite experiencing significant symptoms. Jessica wondered why her brain scans show up clean when there is clearly something wrong and explained that she was “not the only one with that, cause there’s a few of my friends, and they’ve quit going for treatment because ‘oh there’s nothing wrong, I have a clean scan.’ So, then they think it’s psychosomatic. So, I’m always curious to know like why that would be. How you can be symptomatic without physical damage?”
Andrew would like to know more about which parts of his brain are damaged and why he doesn’t think the way he used to.
Andrew would like to know more about which parts of his brain are damaged and why he doesn’t think the way he used to.
I would like to have had explained to me what parts of the brain I damaged, because I know it’s damaged. I know it’s there. And it’s funny because depending on whose reading it some people say, “Oh, that’s bad,” and other people go, “Oh that’s nothing.” So, there’s no consistency. But that’s what I’ve noticed about all doctors. There’s never a consistency. They all have different opinions. I would like to know more about how my brain works now, because I know I don’t think the same way I used to. I don’t see things the way I used to. And it’s not seeing them, it’s perceiving them, not just physical perception with the colors but just the way I take things, and also the way I take things when it comes to, like for instance, when you have diabetes.
Max wants to know more about the link between where the head injury occurred and how the brain is affected.
Max wants to know more about the link between where the head injury occurred and how the brain is affected.
Yeah, so, I think the research. And I think, one of the things is I believe that there is concussion association with TBI. The, so the brain has central, different parts. You have the frontal, parietal, the different lobes, as I remember, and having certain impacts within the brain at certain ways can affect the individual. What I like to know is, you know, if you can, if you can diagnose these patients having, or these patients coming in with all these symptoms, we should be able to see or pinpoint what impact of the brain was hit. If you hit your head, you can’t see. If you hit your front, you can’t remember. I think those are things that should, that I would like to know more about. So where’s my cognitive issue? How did this occur? Because for me, it’s remembering. Short term memory. Did I get hit at the back, or how did this occur? The explosion was on the left, so, and then I hit my head this way, so, that would be kind of interesting to know.
Identifying TBI and connecting Veterans to services
Some Veterans spoke wished that there could be improvements to the process of identifying TBI and connecting Veterans to the services that are available. Sam said that any infantryman who has served in a recent conflict in Iraq or Afghanistan “probably has dealt with some sort of TBI, some sort of concussion. And they probably haven’t talked about it or even think something’s wrong with them, and they have a little minor TBI sort of thing going on. And when you use the word ‘TBI,’ traumatic brain injury, you have to remember that’s a very scary word.” He spoke of a growing movement in Polytrauma clinics to downplay the word “traumatic,” noting that a brain injury or concussion is already traumatic enough.
Mary feels it would be beneficial if “there was some kind of group where, you know, people with brain injuries could sit and get together and talk with each other, compare notes, ‘I have problems with this.’ ‘Oh, I know how to do, what to do about that. I do this.’” Another participant simply asked, “why doesn’t the VA have signs all over about TBI?” Karen emphasized the need for education about different symptoms, explaining that “not knowing was the worst. When you're acting nuts and your shit won't work and you don’t know why, that’s the worst.”
Alex wishes there was more information about what it would be like for veterans who are newly diagnosed with TBI.
Alex wishes there was more information about what it would be like for veterans who are newly diagnosed with TBI.
I really wish there was a better, like say you got diagnosed with TBI, they take you through a workshop and say, “Hey, these are the things that happen. This is -,” I think that would be really helpful. We don’t get that. Even if you send a video home, I don’t know if that would be worth it because I doubt anybody would watch it. But if you get diagnosed with that or you come out of the military with that, I think you need to sit down with somebody that’s an expert in the field that can actually help you with yours. Because everybody’s is different, it’s not a “one size fits all.” But that’s what I’ve had to do on my own and it’s not easy. And like if you would’ve asked me last year what my symptoms were, I couldn’t have told you. Going to the hospital and being in the hospital for seven weeks, being monitored this entire time really helped me kind of accumulate the knowledge that I needed for it.
Max thinks there should be a better way to evaluate for TBI and recognition that TBI isn’t caused just by explosions.
Max thinks there should be a better way to evaluate for TBI and recognition that TBI isn’t caused just by explosions.
So, I think people who are activated individually needs a better way for evaluation, post evaluation, for neurological and traumatic brain. If they, you know, if they had been into a site where there is not only a - and I don’t believe it’s just an explosion - the flights that we went down into Iraq, they were literally going left and right, and your helmet is basically bouncing left and right, left and right in the, because you can’t land straight - you’re gonna get hit - so they would literally swing left, right, 360, we’re going upside down, whatever it might be to land, that’s where we’re going to land. Helicopters that we went through, same exact thing. There was no explosion, but we had to go left to right. You’re always wearing your helmet. Everywhere you went. Everywhere you went, you’re wearing your helmet. They made you run, where if you’re not in a firefight, they wanted you do to physical training, you’re wearing your helmet. And you’re getting constantly banged on that. So, and because I had the biggest rifle, it was always swung over my head and it was always smacking me, so I really don’t believe that just because it’s an explosion that creates traumatic brain injury. It’s the constant impact of that helmet that created a lot of these issues for me. I mean I, yes, I was in firefights, yes I was in explosions, and I believe that Afghanistan one was a big issue, but it was the constant banging. If you don’t have the right size helmet, even those helmets, I had the older helmet too, the big heavy one, because in 2007 they had the better ones with the better chin masks and everything, I didn’t, I had like the Vietnam War helmet. It was the heavy, metal one that they, you know, and then they had the metal armor plates that they had on me, constantly wearing, it was, it tore, it tore you and that, and you can’t go anywhere without it. So, it was, it was hard.
Mike says that TBI is something that the VA takes seriously, but doesn’t know how to treat.
Mike says that TBI is something that the VA takes seriously, but doesn’t know how to treat.
The VA doesn’t recognize concussions or TBIs as a disability or a defect. I mean, when you come back from Afghanistan or Iraq, you go through like multiple, when I say multiple I mean you’re at least going through, we call them med lines. And really all it is just you getting checked on to make sure your hearing, your brain, your blood and all this stuff is perfectly fine. And, I mean they sit there and ask you over and over again, “hey, is your brain OK, you’re seeing straight, you don’t have any ringing in your ears, or anything like that, you’re not slurring your speech.” I mean it’s, it’s kind of like one of those things that they take seriously, but they don’t know how to treat it. And it’s, that’s the bad end, I’d say, of it, it’s, I mean nobody wants it to happen to them. We all want to stay in the fight and we all want to continue fighting alongside our brother, our brothers. But, I mean it’s, something that happens.
Karen explains that people are already ill before they get diagnosed, and that the worst part is not knowing what is wrong.
Karen explains that people are already ill before they get diagnosed, and that the worst part is not knowing what is wrong.
But those years, I didn’t know what was wrong with me, and I couldn’t figure out why I was feeling this way or thinking this way or not functioning correctly, those were the worst. Not knowing was the worst. When you're acting nuts and your shit won't work and you don’t know why, that’s the worst. So, I think to offer education. The problem that we have is that getting the diagnosis isn't new. You're ill before you have a diagnosis. It's new to y'all. So, we already know we're fucked up, but our perceptions of it may be different. Our experiences are different. The way we're going to deal with it is different, and I think maybe saying that here is a trigger, and when a trigger happens, it can do this to your body physically, and then mentally it can do this, but you can do something else mentally if you want if you take the time to realize what's happening.
Understanding the impact of TBI over time
Some said they wanted to know more about how TBI will impact their memory over time and expressed concern about age-related memory loss on top of the memory loss they already have. As one Veteran said, “most combat Vets who have TBIs are probably going to get an early onset of Alzheimer’s, or some kind of condition like it, so, you know, getting older, compared to most of the other Vets, it kind of concerns me because you don’t know how far it’s going to go.” Others expressed a desire to know more about what research is being done outside of the VA and what can be learned about how to treat Veterans with TBI over the long term.
David worries about the longer-term impact of his injury and the possibility of further decline.
David worries about the longer-term impact of his injury and the possibility of further decline.
So, I think long term wise, thinking about it, some of the frustration I have with some of the research I’ve seen and people I’ve talked to is that most of combat Vets who have TBIs are probably going to get an early onset of Alzheimer’s, or some kind of condition like it, so, you know, getting older, compared to most of the other Vets, it kind of concerns me because you don’t know how far it’s going to go. So that’s, that’s a long term, I’d say my big concern is that, you know, when is it actually going to hit me where it’s going to change from me being able to cope, to the time where I’m going to start getting worse and declining, you know. Ten, fifteen, twenty years before somebody normally would have aging issues.
David would like to know more about what kind of TBI research is being done outside the VA.
David would like to know more about what kind of TBI research is being done outside the VA.
So, I think in, when I transitioned from there to the VA, generally speaking, they have the whole part of identification and teaching the basics, of coping skills and things like that. Long-term wise, I don’t, I don’t see anything useful. So far, probably six of us have come back because we have problems with our TBI. You know, they’re doing a little experimentation here or there. But some of the more innovative stuff that I know that civilians do with brains and research is not being done through the VA system, which is done by, you know, obviously my primary care team. But I think it has a lot to do with governmental restraints, generally speaking, you know. I think they could do a lot more, like, even like with the burns, there’s a lot of civilian program that should be used too. Other VAs like yours, where, you know, if the information and research were shared, that it would literally provide a better, more comprehensive, long-term support plan.
Peter wishes the VA would do more research on the effectiveness of electronic resources like Mindspark or Luminosity.
Peter wishes the VA would do more research on the effectiveness of electronic resources like Mindspark or Luminosity.
And the same thing could be true with – and I’m finally getting to the TBI stuff - is like with the Mindspark or Luminosity or something like that. They could collect, you know, daily – you know, you could even do a study on everybody you know with daily use and probably collect far more data. You could even throw in during the study questions about like the kinds of things you’ve been asking me about. Like, you know, open-ended questions. How do you feel today? What did you have trouble with today? What are you improving at? And all of that could be, you know, could be available for therapy and for study. And you know if they’re willing to do something like this, I don’t see why they couldn’t, why the IRB couldn’t approve something like that, too. So I guess I just wish that you know – and the other thing is you have, you know you have this patient population is enormous and is generally pretty compliant. I mean if, you know, like if you let people do it, people probably would. You know, people would probably do more of that kind of therapy stuff that would be helpful to them - and so not only would they be doing it, but you could collect data on it as well.
(See also: Evolution of TBI Awareness; TBI Screening & Diagnosis; Services & Programs for Veterans; Impact on Cognitive Function; Coping with Impacts on Memory & Cognitive Function)