TBI Screening & Diagnosis

They, my ratings say that I have post-concussive syndrome secondary to TBI, is how it reads on my paperwork. I went through a lot of training and they have you do these, I remember these pre-hospital check-off things that you do when you come back through DMOB. You know, “Were you in a hostile environment?” Yeah? Check ‘Yes.’ Okay. “Were you exposed to many explosions?” Yes. “How close were you to these explosions?” Five to ten feet away, you know, and everything like that. And – which is the truth. And “What happened during these explosions? How did you feel?” And I said, “I felt like, you know, the sensation you feel when you can’t hear. Everything’s muffled for a while and it comes up. And then after a while, after a while it’s like I noticed I started my, I started getting a lot more frequent headaches and just migraines that I’ve never had before but when they’d come they’d be whoppers and stuff like that. But I’d get a lot more headaches than I ever used to get in my life and stuff. And they’re bad headaches to the point where it’s like I can’t even walk outside on a sunny day because the light just hurts my eyes and stuff and I just got to be in a dark area. And take aspirin and sometimes aspirin doesn’t cut it, so I just got to like, you know, pretty much tough the pain out and stuff. And I have sleep apnea and all that kind of stuff. It’s just, you know.

But then I got, I got rated for the TBI without really too much – I mean I had my, when I had my first post-deployment screening, I ended up talking to the psychologist that day, who is my psychologist that I’ve been talking to regularly now. And kind of just like talked with her in more detail about what happened. And so, she did get the ball rolling by giving me a referral to the cognitive skills training group. And she said you know, “Hey, I think based upon what you’re telling me, this will help you out.” And that was in like December of 2013 that my post-deployment screening happened. And, and then I got, I got my rating for the TBI, which was just ten percent. And that happened in June of 2014. But then – let’s see, when was it? I didn’t really do anything with it for a while because after that first consultation with the psychologist in December 2013, you know, she gave me the referral and they actually, they reached out and contacted me several times because there was like, you know it’s was an eight-week course and it started like several times. But I couldn’t attend it because it was always a conflict with my school or something else. So, I tried to go but just wasn’t successful. But I did finally get into that this fall, this past fall?

So, I did that course. And then I’ve really kind of picked up steam with, with you know doing more stuff and talking to more people around that time because they kind of – it, it got more into the active system of like, hey TBI people that we’re actually dealing with. And so – and I, and I kind of realized that hey, you have to like, you’ve got to push the envelope a little bit and, and then that’s how you get, you get more help. So, it was like fall-ish of this yeah that I started really pursuing it more and started going to the psychologist again regularly in like December. Because I had my one-year post-deployment screening like, “Hey, how’s it going?” You know? And I was like, “Hey, I’m like not quite getting as much help or getting to the bottom of this more as I’d hoped I would.” And, and after that you know, that’s when it’s been, a lot more has been happening. And so that is what led to doing the neuropsychological, like the full evaluation.

I just kind of dealt with it because we were so close to going home, and I didn’t want to put up with all hassles of all the medical stuff. They were busy doing other, taking care of people more seriously hurt.  And, well when I got back is when I started seeking treatment and getting tested and everything. 

I: And did that happen just sort of as a part of you, as you were coming back, did that happen just automatically or did you have to visit the place you and go for testing and evaluation?

Well, when we returned home we had to go through a reintegration in which they check your medical stuff and at that time I told them well I suffered concussion back in January, my ears rang for about two to three weeks, headaches ever since then. And then they finally eventually got me to into talking with different doctors, getting checked out.

I: And did they ultimately give you a TBI diagnosis or what did they, what did they -

Yeah, I’m rated 40 or 50% with TBI.

My biggest problem was, being a medic, that I never went in and got seen. It was the next day or something, conversation over a cup of coffee with the doc, who I worked for - “Hey I’m kind of feeling like da da da da da, what do you think about da da da? Oh, you know what, you take a couple of those and if you don’t feel better in a day you know give me a call, come back and talk to me. Ok, cool.” Done. No paperwork, no real diagnostics, it was just a conversation over a cup of coffee.

I: When you got out was there any kind of screening or work up at that point?

When I got back from deployment? No. Nope. They give you a basic once over as far as medical, relying pretty much on what you’re telling them. Now had I known then what I know now, I would have sat down with that doc and been like, guess what, we’re gonna spend some time together because we need to document all this, we need to get all this on paper. The problem was, we just got back stateside. I want to go home. I don’t want to be here, you don’t want me to be here, none of us want to be here. How about I just check the boxes, sign off on the bottom, have a nice day I’m out of here. And that is a huge - and I’ve seen it over and over and over again. I had one guy that had a fairly major knee injury while we were over there, three weeks or four weeks in. But he roughed up, he soldiered on. We had a doc, so he maintained care for that guy, and he healed up ok. We kept him on light duty for a while, and da da da da da. Well we got back to stateside, that should have been, and it was in his record from over there, but that should have been investigated further. They should have referred him out. They should have sent him to ortho, said hey let’s take a real good look at this, now that we have the tools to do so, let’s take a real good look at this. They didn’t do that. He checked the box, they checked the box, off he went. I heard from him about four years later and he completely blew his knee out. It completely, he has to have complete reconstructive surgery. So, had that been an issue at the time, instead of “I just want to go home,” that may not have happened.

So, through the process of medical retirement I’m like ok well I did break my back in 89 in a parachute jump, you know so I was going through all this stuff I had to fill out a lot of things for the VA and I’m like I was always the butt of jokes about that day at the drop zone when I got knocked out. I guess, you know, watching it was pretty funny but anyway. So, I’m like, hey, write a buddy statement, pull it, turned it in to the VA, and they’re like quick as can be, oh yeah, we wanna test, check you out, see what going on. So, they did the full CT Scan, I did this cognitive test, and they’re like we see like three bleeds on your brain, I mean they’re done, I mean they’re not bleeding anymore, they’re stabilized. And we see that you do have a deficit, you know, processing stuff. So yeah, you suffered a TBI. And that like, oh, didn’t see that one coming. So, and I was medically retired August 28, 2010.

So, for me, my primary injury was burns, because I had severe third degree burns on 40% of my upper body, so really, everything else, it didn’t really matter too much. A coma for 32 days, so I kind of woke up and had no idea where I was or what was going on. And I was being treated primarily for my burns.  They really didn’t care about anything else. Yeah, unless you were missing limbs or those things, they primarily treated the most urgent injuries at the time and then they dealt with the other ones. So, I think my first, my first TBI evaluation didn’t even take place ‘til month 14 of my recovery, which would have been in 2007. And the military didn’t, still didn’t want to recognize TBI, or PTSD, so, because they waited so long to evaluate it, most of us wounded warriors who were here, basically got diagnosed with mild traumatic brain injury as long as we weren’t missing, you know, as long as we didn’t have a crushed skull or missing, you know, had, had brain matter removed, we pretty much were all diagnosed with a mild TBI because they had no idea. So that’s kind of how I got to the point where the TBI was identified.

…matter of fact I really didn’t get, have any kind of assessment, regarding, I mean there, there was some assessment when I was in the, you know, going through my, my claims and everything. My claims process. But I think, the most of my, most of my kind of realization, I guess, I guess, does that answer, kind of, more, most of my, kind of evaluation was on myself.  Because you never know how an injury can, can really affect you and I guess, I guess there was really no, I mean there’s no handbook really to kind of, kind of say, you might be expecting this in the future or you might come across this in the future to, especially with, or I never got that or any kind of words of advice as far as my doctor was like, “well you’re, you know, good enough to, to go back to the front. I guess you, I guess you must be fine, you know if you start, you know severe, like severe action like, if you start, you know throwing up constantly or, or your balance is just completely out of whack, you know things like that or, if you know, heaven forbid you start leaking clear fluid through your nose, or, you know, if it gets bad enough for something like that or if you have severe, especially if you have severe, severe pressure headaches, to definitely get it checked out. But, as far as the long-term effects, I guess I never really got any kind of information about it. It was more of a self-evaluation. “Hey, I’m not what I was, you know, a couple months ago, a couple, you know, a couple years ago. Not the same person, I’m not. I should be here, and I know I was here before, and ever since that day I’ve been limited in some way.” And kind of really going back and kind of, you know, evaluate, I guess evaluating myself and saying something’s not right. And that’s kind of when I….

But I get fabulous care at Reno. They took me, the, my primary care doctor sat me down, heard my whole story, and then said OK, we want to start at the top and work down. They did a brain scan. They did a cervical MRI and a lumbar MRI. I knew my neck and back was bad. And this was just a year and a half ago. I had an appointment with my primary care doctor and he was a really, really cool and understanding person. Really good guy. And he wasn’t happy with the VA, particularly the way it was being, the way it was processing us. So, he went out of his way to help better, and listening to their story, because he knew that’s where the disconnect was. The VA won’t, doesn’t believe the Veteran’s story because all they think is you try and get money, OK. A lot of cases that’s true, some it’s not. For me it’s not. 

Anyway, he sat me down and he said, “You’re right, you, you racked your head really, really, really badly.” And I said, “What?” He said, “You have a very bad traumatic brain injury.” And I just kind of, I couldn’t respond. I, I didn’t know what to say. And he said, “I want to make a, an appointment with our neurologist here at Reno so you can talk to him.” I said “OK.” So, about a month later, it was right at a month, real good here at Reno, I saw the neurologist and he sat me down and he started going through the levels of the MRI. And he said, “Now you’re good up here, the top of your brain, the top of your head, front part of your brain is pretty good.” He went down a little further and said, “You see this black?” He said, very gently he said, “Everything that’s black is, is not functioning. It’s dead.” I said, “OK.” He said, “I’m going all the way down through your brain now.” And I couldn’t answer. All I could say, I said, when he was done I said, I said, “That’s my brain?” And he said, “Yes.” And he said, “It’s old. It, it’s an old injury that happened a long time ago. OK.” I said, “Yeah I know, when I fell.” He said, “Yes.” As a result, the whole back of my brain, encompassing about 20% of it, is dead. By God’s grace, I can still talk. I can still, I still have the facilities within my thoughts. I can speak. I can write. But I have a lot of other limitations that I didn’t know I had.

And then I was sent to see a psychologist, and she explained it a little further. And did a test, a 4-hour TBI test that the VA does, that determines what parts of your brain are, have deficits. And, as a result she said, “Well, the front of your brain has been rattled. Not badly, but it got bruised really bad. It doesn’t organize things properly. The back of the brain and into the center cortex got rattled quite badly, which effects your primeval things, senses to want to eat, sexual desires, you’re kind of out of the picture. And temperature, body temperature, organ control, rate, controls your heart rate, probably your breathing, swallowing.” She said, “That’s been rattled quite well.”

And it – when I got home, it got worse and worse and worse to where like I would forget to brush my teeth, I would forget to do all this other stuff. And then I went back into the National Guard, and then went again. And then after – and then went to Iraq again. And when I came back I applied for disability through the VA. And when I applied for disability through the VA, I met some old lady who was like a nurse scientist who works for the VA down in Eugene, but she works from, she works in Oregon and like Nebraska. She has a bunch of books out and she was the one that was seeing if I had TBI, anything like that. So, I mean like someone that is like, I would say forerunner to the whole TBI thing. She was, she was an older lady. I forgot her name. But she, she, she did this one test where it was like she showed me a bunch of faces, and then it was like, “Remember these faces.” And I did, and I got a really good score on that. And the reason I remembered wasn’t because I was trying to remember the face. In the military, they teach you to remember certain features about a face, which makes it a lot easier to put in your brain for short-term and stuff. So, I did that, and she’s like, “Oh, you were,” this certain job? And I was like, “Yeah, that’s the kind of job I did.” She was like, “Okay, we got to do a different test.” She gave me a different test, I bombed it really, really bad. But I think me doing that she, she started writing, started doing different tests for people, for TBI, personally for her. She’s like, “Oh, I got to remember this next time.”

And then after that, I started going to these groups for TBI, and they would – and they weren’t like to cure TBI - it was like, “Here are the things that could help you with TBI.” And the big thing was getting into the habit of using my phone to put in data, stuff like that for appointments. Which even now like, because I leave my phone on silent a lot because I’m in school all the time. Even now like sometimes I’ll forget, even though it’s in my phone, it’s probably going off, it’s on silent so I forget. I was, I was told I was right on the edge. So there was like – there’s TBI and then there’s – here’s the edge and there’s the other TBI. And I was right on the edge and I, if I chose to go this way it would’ve given me like a hundred percent disability, instead of this disability that I have now.

If I did the math, maybe like 28 years.

I: How did you finally get connected?  Was it one of the doctors that connected you?

Well, what happened, like I said, the divorce is, the loss of relationship with my relatives, my brothers, and parents and finally my wife and my kids, you know, that was kind of like the bottom that forced me to take some action, you know. And then I came into the VA and they saw that there was a documented head injury. And it took time, you know, because I would go in there expecting things, and not understanding how the system works today. Today, it’s always changing. And even though I have this awareness, I had to keep up with the constant changes that are taking place, just to keep going, you know, stay above, you know.  

Yeah it’s, again, it’s literally, I was looking at the MRI and there were these white splotches in my brain, and it’s permanent brain damage. It’s not going to better. And it’s like wow, I am damaged, I’m damaged goods. And realizing that. You know, in the end all of the qualifiers, we’re, all of us are brain damaged to some extent, dududududu. Yeah, cause I’d always been able, you know, I mean, even people who just didn’t like me used to call me a smart ass, I was always smart, and then all of the sudden I’m not as smart as I was. As you know intelligence is the ability to quickly process information. And it became longer for me to do that. 

And, and the more stress I’d take on, the worse it got. And that’s when they initially screened me for TBI and, you know, all the red flags were in place. They just said “acute TBI,” is basically the only answer I got. I don’t know much about TBI and I try not to dwell on these things, so I just leave it at that, you know? The first time I even heard the term “TBI” was last year. So yeah, 2012 when they diagnosed me was the first time I had heard of it. The only thing I know about TBI is they sent me disability screening, saying, “You have TBI, acute TBI.” That’s the extent of what I’ve been told about TBI.

And then my wife of course, you know, looked into it a little bit because she’s concerned. But she says you know, “Other than traumatic brain injury, obviously concussions,” you know? That’s all we really, you know? Yes, I’ve had lots of concussions. You know? It was a rollercoaster. I mean, I mean at least within me because it’s like, okay, now we have a definition. But you might as well have said it in a different language, because I don’t know what the heck that means, you know? So, it’s, it’s like – another great example, it’s like going to family dinner with my wife, because her family all speaks Cantonese. And so, I understand a little about what they’re talking about, but not enough to be in the conversation, you know? And that’s after eight years. So, with TBI, and I’m only three, four years into it, I’m still learning two or three words a month here.

Mild to moderate is no loss of consciousness to, I think, like an hour. And then moderate to severe is 24 hours or more. And then severe is like several days, or longer. Yeah. So, I have known guys that, I mean they were out for a couple few hours, they’re fine, they’ve got no issues. I know other folks like me that, as far as I remember, never actually lost consciousness, and I’m all goofy. It affects all the brains differently. I got evaluated at the VA. They did the long evaluation, all of the tests and all this. They did not do any brain scans, just the put the things in the box and, you know, tell me what numbers I’m telling you, etc. So, I got diagnosed mild to moderate. I didn’t know at that time that the mild to moderate had only to do with unconsciousness, not to do with how severe your symptoms, which just blows my mind.