Evolution of TBI Awareness
The medical understanding of concussion and TBI continues to evolve. Several Veterans recalled that at the time of their injuries there was little understanding of the potential effects of TBI or concussion – especially as a result of blast injuries - while others noted an increased awareness of TBI and importance of screening throughout the 2000s.
Scott recalls getting an icepack and some x-rays, but didn’t receive a formal diagnosis until he returned from deployment.
Scott recalls getting an icepack and some x-rays, but didn’t receive a formal diagnosis until he returned from deployment.
It’s kind of a little sad because they’re just kind of like, “Ah, here’s an icepack. You’re fine.” You know? And I was like, I demanded x-rays at the very least. And so, I did get that. But I never had any neuropsychological testing like as a result of that. So, they did x-rays and, you know, maybe an MRI? I’m not sure. But that was pretty much it. And I never even really complained to anybody, like, “I’m feeling like I can’t do this.”
I: So, did anybody ever like officially say to you, like you may have had a brain injury or diagnose you with that?
Not really. I mean with a small crew in a submarine, I mean the ship’s doctor was like – he was trained with like the Fleet Marine Force. I mean he’s a smart guy, but at the same time like he was kind of a jack-of-all-trades as doctors go. So, there was no like specialty involved. And he’s just like, “Yeah, you were concussed pretty bad and you know, I mean you’re going to be feeling a little weird for a minute.” So, you know? But it was – yeah.
I: And when, when you come out of the Navy do they screen you at that point or does anything happen where they ask you about that possibility? Or is that more for the folks, for the people that were deployed in like Iraq and Afghanistan who – may have come into contact with that kind of?
Yeah. Well, so I mean I just, I just got involved with the VA kind of, kind of on a whim. And I’m really glad I did, because the treatment – ability to talk to people and kind of get through this. Like it’s been inspired by just the VA’s like willingness to help. And so, I actually, I have nothing bad to say about that. But yeah, I mean like so I, I just went to the VA randomly and I was just like, “Hey, I, I want to get enrolled with healthcare options.” And they were like, “Oh, you should file a disability claim. Did anything happen to you?” And I was like, “Well, there was that one time that the hatch landed on my face.” But like, but I had never even thought of it in terms of like, you know that was probably a TBI. And, you know, maybe there’s an explanation for these lingering effects, you know. And so, so I didn’t really give it a lot of thought like while I was in until I got out and started coming to the VA. And, so I mean – yeah, so the VA has definitely like, it’s worked to help me to want to figure out like, you know, if and what quantifiable effects were there from, from what happened.
Andrew recalls that when he sustained his first injury, there wasn’t yet a term for TBI.
Andrew recalls that when he sustained his first injury, there wasn’t yet a term for TBI.
They called it severe brain disease trauma, I think. I still have my old rating decision from the VA in 1994, and they called it something completely different. TBI didn’t become a thing - I think the first time I heard it was in 2006 when I fell off the cliff. Of course, my boss told me after that I couldn’t do anything with the wording in it like running, no meteor catching. He actually put no meteorite catching in there.
I: And by the time the third one came along did they have that sort of terminology of TBI?
They called it TBIs, and it didn’t really affect how they treated me, but it was one of the reasons why they said I had to be medically retired, because I had so many things wrong that I finally agreed that yes, you’re not going to be able to send me anywhere with any kind of confidence where I’m not going to get injured again. So, it was a variety of things, but that was one of them.
Margaret describes how the term traumatic brain injury wasn’t even being used when she was diagnosed in 1969.
Margaret describes how the term traumatic brain injury wasn’t even being used when she was diagnosed in 1969.
They did. They did, eventually. Yeah. You know, because as I said I was worked up for heart problems, you know a runner passes out, neurology, looking for I don’t know, multiple sclerosis, or something of that nature. And finally ended up in ear, nose and throat, and it was then that the diagnosis was made based on my history. “Well, have you ever been in a trauma? Have you been in a car accident?” You know, all the questions asked and, I didn’t have any, any history that would have caused this except for that severe concussion. So that’s how that, I don’t think you’ll find it anywhere in my records where it says traumatic brain injury. But that term wasn’t even, it wasn’t being used in 1969.
Compared with physical injuries that could be easily seen, head injuries – especially closed head injuries after exposure to a blast or explosion - were still relatively invisible and poorly understood. One Veteran said that unless you were completely incapacitated, brain injuries weren’t really acknowledged as a “thing.” Another told us that when he was deployed in the early 2000s, improved explosive devices (IEDs) – which are known to cause TBIs – were just starting to be used and TBI “was not something that was discussed because it was something that was really unknown.”
Jake recalls that in 2010 much more attention was paid to more obvious physical injuries.
Jake recalls that in 2010 much more attention was paid to more obvious physical injuries.
But even though it’s 2010, and now people are starting to give a shit about, you know, traumatic brain injury, more publicly. And the commands are like being held responsible. I was not with my parent command. I was not actually with a command at all because I was at the at the training, you know, at the school house, and that was my last jump, so all they want to do was “here’s your certificate, here’s your wings, go back to your command.” So, I got back to the command. I told them “hey, this is what happened.” They’re like “OK, we’ll get you some crutches, we’ll get you a, you know, cast, we’ll get you whatever you need, you know, get you surgery and everything.” They didn’t really give a shit about the brain. Invisible injury.
The TBI side, alongside the PTSD, this is what I’ve come to learn is, if you’re dealing with anything else, alongside it, it’s pushed aside. If it’s the only thing you’re dealing with, then people will maybe give you the time of day. But if I have a physical injury and I have, you know, and I and I have a PTSD question and I have a TBI question, I’m only going to get attention for, you know, my shoulder or something like that. It’s, I mean, I’m not saying that that’s always the case, but more than likely, at least for one year in service and push back to 2010, definitely the case. So that’s what it was. “Oh, you broke a rib. Oh, you tore your abdominal muscles. Oh, you broke your, you know, ankle, O.K., we’ll take care of all that. We’ll patch you all up because we need you to be good to go, you know. Never mind your brain, it’s kind of a big deal.”
From the time that this had happened until the time I made it back to my parent command had been a couple days. So, I mean, I don’t, I’m not, I don’t know how much would show by then. I don’t know, I’m not really familiar with the testing and everything, but I don’t remember doing anything really, by the time I got to medical. So, I was just like “yeah, patch me up, give me crutches, give me, you know, oh I need to have surgery? Oh yeah, you know, blah blah blah blah blah.” No idea. No idea besides hey my head hurts like this has gotta, I gotta stop hitting my head on shit.
Sam talks about how traumatic brain injury was unknown and not discussed when he was serving in the military.
Sam talks about how traumatic brain injury was unknown and not discussed when he was serving in the military.
So, what happened is – we got back – oh, when I was there, concussions, TBI, that, that was not something that was discussed because it was something that was really unknown. The war started in 2003, they started using IEDs near the end of 2003, right about the time I started getting there. They were not nearly as bad as the IEDs are now, where it will split the vehicle in half, toss it fifty feet in the air and stuff like that. So, on that front, I’m happy that they were small. But I’m also sad, because the way that war goes is stuff gets better and better and better and bigger and bigger and bigger. Like World War II, the atom bomb, it went from little bombs to destroying seventy thousand people. And that’s just the way that technology goes in the war, especially explosive technology. And so, I forgot what we were talking about.
I: We were just talking about kind of what happened afterwards, and if you got treatment?
The treatment was like basically a concussion test. Do the eye thing, ask you some questions, “Hey, what’s going on?” I’ll be like, “I’m a little woozy, feel a little lightheaded.” And they’d be like, “All right, here, take these. Go take some rest. You’re not going out on mission tomorrow.” Nauseous because I was woozy. After, after a day I was back out there. Like after like one day I went back out and just did it and had a good time. Then I got blown up a month or two afterwards. I can’t remember exactly when that happened. It’s just, because there was a lot of them.
Max says that at the time he was diagnosed, the idea of TBI was someone who was neurologically incapable of doing anything.
Max says that at the time he was diagnosed, the idea of TBI was someone who was neurologically incapable of doing anything.
I got diagnosed with traumatic brain injury at the VA, because of the concussion, the headaches, my low back pain. But I, you know I, they were, at that point in time, not necessarily ready for TBI. So, they were, their idea of TBI at that time was someone who was complete loss of limb, I believe, complete loss of limb, neurologically incapable of doing anything, I believe. So, for a walking wounded to come in and say I’ve got some issues with my, with coordination, stuff like that, I believe that’s, they declined me of service connection, even though it’s been recorded that I was in that explosion. So, I feel that, yes there’s a high impact of post-traumatic stress out there, but some of these incidences such as myself have TBI situations that could be underlying or masked from that, and we, you know, as a health care provider again, I believe that’s one of those things that I think this research would probably be good for them to overview and see.
Stigma associated with seeking medical attention
Several of the Veterans we interviewed described the “stigma” associated with going to the doctor and the general sense that you don’t complain or seek treatment unless an injury is really bad. Others described a reluctance to “leave their guys” or be perceived as weak if they called attention to their symptoms. As Brian said, “you know, you’re not unconscious, your limbs are all in place and—what was I going to say—you can function. I mean, the mission is the most important thing…” Some said they resisted taking time out to heal and wanted to push on. William sustained his injury while in combat, but told us that they “weren’t sure was it was back then.” He didn’t want to leave his unit, and didn’t receive medical attention until his symptoms became so severe that he needed to be medically evacuated.
Brian explains that there is a stigma against going to the doctor unless an injury is really bad.
Brian explains that there is a stigma against going to the doctor unless an injury is really bad.
Yes, as long as you can - you know, you’re not unconscious, your limbs are all in place and - what was I going to say - you can function. I mean, the mission is the most important thing, and usually, like I said, we’d do these block parties and by the time you got back from a mission you’re so tired you just want to sleep. So usually most of the time, I mean - and there’s a stigma too against going to the docs, just you’re weak or whatever so it’s like, you know, especially with mental illness. And the unit I was in I was in a special operations unit, so that even heightened the mentality more being weak or being strong. So yeah, usually you didn’t go to the doc unless it was real bad because it was sort of suck it up, get some ibuprofen, and…
I: Did you notice any impact?
Not from those times, no. I mean, there were residual effects I’d say for like 20 to 30 minutes, but I’d say those were overcome mainly due to the adrenaline because you’re about to get out of a vehicle and just start running, so that just sort of overtakes everything. I didn’t experience anything after those. With the parachute jump I did.
I: And what did you experience after the parachute jump?
Like brain fog, dizziness, vomiting - or not vomiting. No actually, I’m sorry. Just feeling lightheaded and sort of like had a hand around my head sort of deal. I just slept it off for a few days, and after that it went away. I mean I got an MRI here. They said it is probably and mTBI, and I’ve done like the four to six-hour neurological psych testing and they said it was within average range, bit with PTSD and TBI there’s a lot of overlap, so they said they couldn’t definitively say that I have TBI, but they noted it in my record.
At first William didn’t want to leave “his guys” to get treatment, but as his symptoms worsened he was eventually evacuated.
At first William didn’t want to leave “his guys” to get treatment, but as his symptoms worsened he was eventually evacuated.
They wanted to med evac me out and I didn’t med evac out. And I fought it because you know we were in the middle of combat and I didn’t want to leave my guys there. And it kept getting worse. You know, symptoms were like – I don’t know. I don’t know if it was PTSD, but I had, had seizures and all kinds of other issues. And I was sleepy, I was – I had cognitive issues and difficulty reading, mostly because it tired me so to read and to do things were natural.
And then finally I was med evac’ed out to Germany. I got to the hospital and I was hungry. And so, I left the ambulance area, the ER area after they put the band on me. And I walked down the hill and I went to the deli and I was trying to get something to eat. And I had another seizure and then I get carried, carted back up to the hospital. And I was asked, you know, why did I leave? You know, I was just hungry. And they told me they’d feed me. I mean we came from – there was no food in Iraq. You know, there was no ammunition. I mean, we had nothing early on in the war. So, I went through some sort of Coumadin therapy. They weren’t sure if I had a PE, they weren’t sure what it was, a blood clot, they weren’t sure what it was back then. So, I got released.
Increasing awareness of TBI over time
A few of the Veterans we talked to recalled an increased awareness of TBI throughout their time in the service. Some thought there was a turning point – one person mentioned 2010 and others said he noticed a difference after about 2006 – when TBI started to be acknowledged a bit more and there was a bigger focus on routine screening. Others told us about an increased recognition of the risks of blast injuries. A few people we talked to described having troop commanders who were aware of the risk and would make people take time out and see a doctor if they someone had a concussion or suspected TBI.
Jake says that when he was injured in 2008 they didn’t really screen for TBI, but after 2010 it became more of a thing.
Jake says that when he was injured in 2008 they didn’t really screen for TBI, but after 2010 it became more of a thing.
But push back to 2008, you know, we didn’t get really screened. I mean I don’t remember ever even hearing the words TBI screening or anything like that. I just don’t remember it…I’m not really familiar with the testing and everything, but I don’t remember doing anything really, by the time I got to medical. I’ve done plenty now, it’s like, I mean because I eventually got to the TBI clinic, so I’ve done plenty of testing now. But I just, I didn’t, again though, I didn’t think anything of it because I didn’t know, you know. Looking back, I understand that 2010 is kind of a big year, at least that’s what I’ve been told, it became more of a thing, but I didn’t know at the time.
If someone had a concussion while they were overseas, Mike’s commander would make them see a doctor and sit out for two weeks.
If someone had a concussion while they were overseas, Mike’s commander would make them see a doctor and sit out for two weeks.
I wanted to be a lifer. My commander at the time he, he was like “I don’t want you to end up as scramble-minded as I am. And this guy had, he’s been through a lot, like, he started at the end of the Gulf War, did all of Iraq, and did the majority of Afghanistan, and he’s over there currently right now. And, he’s like “man, you’re probably one of my best soldiers, you’re kind hearted to everybody, I just don’t want to see you messed up like I am.” And, like, he is extremely scatter-brained. Like I don’t know how the guy is living. He’s probably had at least a good 52 concussions and probably 20 or so, 20 or so TBIs. And that point, from my EMR background, I immediately assume that he should be a vegetable. But, I mean the guy’s still living and breathing. And, he’s scramble-minded, and you gotta remind him every five minutes or so, “hey this is what we’re doing, this is what we oughta do.”
I mean, he’d look out after everybody. If somebody had a concussion or a TBI overseas, he would immediately send you to the, the Air Force doctors, which those are supposedly one of the best doctors. And literally you’d sit out for two weeks. As much as you’d wanted to go and you’d try to fight and stuff he’d punch you right in the face and say “hey, sit down, you need to give your brain some time to heal.” And, I mean that’s kind of, how it is now, and how we, how we have developed SOPs overseas. And he’d just say “hey, no matter, I understand how you want to get in the fight, but you can’t because your brain is messed up and you can’t, you’re not fully there, you don’t understand or comprehend things and we need you to be at full capacity in order to realize that, hey, this is what’s happening. This is what I need to do. If you’re scatterbrained you can’t do that.”
(See also: How Injury Occurred; First Signs Something Was Wrong; TBI Screening & Diagnosis; Unanswered Questions & Areas for Future Research)