Okay, here’s my next question:
If neurologists are trained in a “scientific” sort of method and they specialize in studying the brain, why is it that there seem to be so few neurologists out there who truly “get” TBI?
This is quite distressing… and by “this”, I mean all the stories I’ve heard and read about how people who have sustained TBI’s are either dismissed or misdiagnosed or just plain mistreated. My own story is among them.
Before I start, I just want to say, this is not intended to be a rant about the terrible experiences I’ve had with neurologists. I have had some pretty distressing ones, but I really think it’s more productive to seek solutions and embrace the lessons, rather than gunning for revenge. We’ve all been hurt by someone or something, along the way, and if we’ve got TBI-related issues, the situation tends to be muddied — both by the ignorance of the general populace (and a lot of “experts”) and by our own altered cognitive processes. I realize, as a result of my TBI’s, that my mind can play tricks on me. So sometimes things aren’t as bad — or as good — as I think they are, so please take what I’m about to say with a grain of salt.
My own neurological saga began nearly a year ago, when I started to put two and two together and realized that there was something fundamentally wrong with my cognitive process. Something that had gone unrecognized and undetected for almost my entire life, but had been a persistent problem and issue for many, many years.
In the process of talking with my therapist, I took a very close look at the events of my childhood and how they had affected me. I’ve had a lot of behavioral and cognitive and emotional problems over the course of my life — I’ve been able to mask the cognitive and emotional ones really well, mostly by just keeping quiet and being very vigilant about people’s reactions to me, but the behavioral ones were a real problem when I was a kid — it’s what people could see: the temper tantrums, the meltdowns, the bad moods, the lashing out, the yelling, the acting out… Yikes.
Anyway, I was trying to figure out why my siblings had similar experiences to mine — some of them had worse ones, in fact — but I had the most trouble with things. One day, I just mentioned to my therapist, off-hand and very matter-of-factly, that I’d been hit in the head with a rock when I was 7 or 8 years old. She didn’t follow up with that, but that started me thinking. And it occurred to me that that injury, which I recall knocked me out briefly, might have affected me more than I realized.
I went about collecting and recording as much information as I could about my observations of my life — using valuable guidelines over at www.headinjury.com as a starting point. (Thanks! to them for their great info! What a great resource they are!) I wrote down as much information as I could about my childhood experiences that seemed to be directly related to my injury at age 8… and then I collected as much info as I could about how it appeared my adult life had been impacted by that injury. I started to see a lot of patterns that bore a really close resemblance to things I read about other people experiencing. (I’ll post some of what I collected, so you can see what I came across.)
Then I systematically kept track of my daily experiences, and I recorded what went on with me on a regular basis, tracking it to the symptoms of TBI. And I read a lot online about how people can be affected by brain injuries.
Now, all this was happening behind the scenes of my regular life — sort of on the QT. I did reach out to local brain injury associations, as well as some support groups. I was still really searching for some understanding of what had happened to me, and how it affected me. All of a sudden, I had a plausible explanation for all the difficulties I’d had as a kid, why I was so erratic, why things that were easy for other kids were hard for me… and why I’d made the kinds of decisions and taken the sorts of actions I had as a teenager and an adult. So many things could be explained by this! It was both euphoric and disconcerting. A lot of information came into my life in a relatively short period of time. And I was pretty much doing it on my own.
Knowing that I have a long history of being mistaken or downright wrong about things that seemed pretty “obvious” to me, and knowing that going it alone was perhaps not the best way to do things, I decided to seek out help. I was given some great information from other TBI survivors about finding a neuropsychologist to do an assessment of my situation and help me formulate a plan to rehabilitate myself. The only problem was, someone warned me, my insurance company was notoriously difficult about covering neuropsych exams (NPE), unless they were medically warranted.
I knew I needed an NPE — really for the sake of getting some professional corroboration about my situation, so I wasn’t just running around saying “This is what happened to me!” and making a total fool of myself in the process (It’s happened too often before, sadly). But how to qualify to get one?
I asked around, and people said that a neurologist would be the one person to determine if you needed one — anything less might not be honored by the insurance company. The problem was, not all neurologists have a clue about TBI, and some of them are downright hostile, when it comes to brain injury. I’m not sure why this is, if they’re neurologists and it’s their job to know about the brain, but there we have it.
So, off I went in search of a neurologist who specialized in TBI. I searched high and low, pulled data from listings from support groups and organizations, then cross-referenced that list with the neuros my insurance company listed on their website. It was a painstaking process, but eventually I found a neuro who specialized in TBI who seemed like a decent sort of fellow.
I compiled all my notes and edited them down and collected them in a three-ring binder. I listed my symptoms, my history of head injuries (which had actually lengthened — the more I thought about things, the more injuries I realized I’d had), my issues, and information I thought would be helpful for him to make some sort of diagnosis. I genuinely thought he would be open to it, and that he would appreciate the information, without having to sit and ask me all the questions. Plus, I was afraid I’d get turned around and not be able to answer accurately, so I wanted to make sure I had the right information recorded. I take my health very seriously, and I take my integrity seriously, too. I didn’t want to be misstating or confabulating or confusing the issue.
Well, I don’t have the time here to describe exactly what happened, but the end result was me feeling incredibly dismissed and my difficulties downplayed. (I’ve got to write more on this — it’s a great story and an educational tale — but not for this post.) Bottom line was, the neuro wouldn’t pay any attention to the information I’d collected, he ruled out the benefits of an MRI, he tossed my book aside, and he reached the eventual conclusion that I had “emotional problems” and I needed to see a cognitive-behavioral therapist and possibly go on Ritalin or some other stimulant.
He basically told me that my situation was “more complex” than he liked to deal with, and there wasn’t much he could tell me, so I should go see a neuropsychologist.
Well, yuh, I already knew that. I had been hoping he could at least confirm or deny the extent and possible impact of my injuries. But apparently, it’s kind of hard to tell what’s up with someone when they’re talking about multiple injuries sustained over the course of more than 30 years.
In retrospect, I think that my emotional state at that time didn’t help. I was very stressed when I went in to see the doctor, and I wasn’t really clear about the answers I was giving. I also didn’t feel as though he was in the least bit sympathetic to me, and I had a lot of trouble verbalizing the answers to his questions — either I gave him too much information, or too little. It just wasn’t good. Plus, he only had 50 minutes to spend with me, so there wasn’t much either of us could accomplish in the meantime. He did give me a neurological exam, and I came out looking pretty normal, from what I can tell.
I left that visit feeling genuinely unnerved. At the very least, I had expected at least a little indication of interest in my situation, but the doctor seemed more interested in seeing people with “real” problems — as though a lifetime of catastrophic relationship failures, a patchwork job history, constant headaches and ringing in my ears, mood and behavioral issues, and a complete and utter failure to fully realize my potential is not much of a problem at all.
Maybe he was looking for something more dramatic. Like a tumor. Or cancer. Or a Phineas Gage-like iron spike through my skull. Or some sort of medical data, which I did not have, since I’ve never gone to the hospital or sought medical treatment for any of my injuries.
Anyway, I was pretty torn up about the experience, and I continue to be bothered by it. It doesn’t help that this TBI business is wreaking havoc with my perceptions, but there seemed to be an alarming lack of intellectual curiosity, or even logic, to the doctor’s demeanor.
So, I buckled down and went ahead with finding a neuropsychologist who could perform an NPE on me, per the doctor’s directive. Again, like Diogenes with proverbial lantern in hand, I searched high and low, seeking a qualified individual who had a clue about my type of situation. Again, I had to cull out the ones who were flagged as “trouble” by a brain injury support group info packet (like the ones who testified for insurance companies to discredit TBI survivors in court). And then I had to cross-reference them against the insurance company’s website. And then I had to research their background and their professional reputation, if I could find it.
I found someone, at last, but he couldn’t fit me in until September. This was back in April, or so.
So, I sat and waited. And lined up another job. And totally screwed up that job and had to go find another one, so I wouldn’t lose my house.
All the while, it was getting harder and harder for me to deal with being so brushed off by that first neuro. So, I thought I’d see another one — someone a friend of mine had been seeing, whom she liked pretty well. I made an appointment with him and went to see him, thinking that I might get farther with him, if I just focused on one issue, rather than the whole kit-n-kaboodle.
I made up another version of my notes for this doctor and took it with me to reference. I wasn’t going to make the same mistake I’d made with the last doctor and just run my mouth without anything positive coming out of it.
But this guy was even worse than the last one. I think he may have either talked to the other doctor or he saw some of my notes from my PCP, who got a letter from the first doctor, and he treated me like a “hostile witness”. He wouldn’t let me use any of my notes, and he just grilled me over and over about details I wasn’t clear about, or I had to take time to think about. He announced that an MRI would be pointless to do, and he said my headaches were just stress. I had no time to gather my thoughts or describe the full spectrum of my issues, and I left feeling totally bulldozed and dismissed… and a little mistreated. (Again, I’m sure my TBIs didn’t help my processing at all — I’ll post more details on my experiences later — it’s really a very informative story.)
In the end, I didn’t get anywhere with these doctors. Maybe I was looking for the wrong thing from them. Maybe I was expecting too much, hoping for sympathy or at least a little curiosity about me and my situation. But still, it seems to me that a neurologist (for heavens sake!) would exhibit at least a little interest in someone like me — someone who has sustained multiple mild traumatic brain injuries over the course of my life, and has still managed to put together a life that a lot of people would be happy to have — with a loving spouse, a great house in a great town in a great state, pretty decent facility at getting along in the world, a career that looks great from the outside, the ability to be employed, and to be fully engaged in my life (my limitations notwithstanding).
But in the end, I got nothing. Worse than nothing. I got dismissed. Shunted off. Sent away to someone else.
I’m a TBI survivor who needs help understanding exactly what is up with me, and why my brain doesn’t work the way it should. I sought the help of neurologists… who just couldn’t be bothered with me. They dismissed me without so much as a second thought, from what I could tell. It’s their job to help people with neurological issues… I’ve been under the impression that it’s their job to identify the issues and be of assistance. And yet, both of these guys exhibit precious little interest in my situation.
Where’s the logic in that?