What’s a neuropsychologist good for after #TBI?

brain-frame-swirlsAn interesting thing happened on Twitter last night. I was checking tweets to take my mind off the back and leg pain I’ve been having, when I came across a mention  from @AllConcussion about how neuropsychologists have a  not-so-stellar history of believing that post-concussion issues will pretty much all resolve and that neuropsychs have a troubling history of dismissing concussed individuals and labeling them the “Miserable Minority”.  {side rant – how frustrating it is, to have so much great research behind paywalls – argh!}

It caught my attention, because I’m in the midst of transitioning to a new neuropsych (NP), and the process has not been simple and straightforward. My NP has been a bit cagey about referring me to someone, and they’ve seemed over-cautious about the whole process.

I was thinking there was some ulterior motive — when there’s not much transparency, I get suspicious. But now I think it’s more protective. If the norm among NPs is to dismiss concussion as a transient thing, and they don’t have a lot of respect for the Miserable Majority (of whom I’m apparently a member), then it’s a good thing that my NP is being extra cautious and not referring me to ham-handed folks without a clue.

Not that my own NP is without their own vestiges of “your mild TBI should clear up any day now.” I’ve gotten that line from them at irregular intervals over the past 8 years. They don’t actually see me as having the kinds of struggles that I do. Then again, they’re not living my experience, and they have no idea how much I camouflage and gloss over, because the thought of attacking it wholesale is so overwhelming and distressing to me, that I won’t even go there.

Nope. Not going there.

Plus — and it surprises me that they haven’t wrapped their head around this — I have been seeing them in the evening after a long, depleting day at work, preceded by a commute through idiot-filled, unpredictable morning rush hour traffic, and followed by an even worse commute through tired and cranky idiot-filled, unpredictable traffic (that’s twice as long as my morning commute), and I’m walking into their office to sit under fluorescent lights, across from a person who may or may not really understand what I’m talking about, and that’s incredibly stressful for me. It’s a threat for me, in a way.

And what, dear readers, does that kind of threat stress do the brain and body? It routes activity away from higher reasoning and subtle nuances of experience and behavior, and it puts you in fight-flight mode. Fight-flight mode over-simplifies everything, including how you relate to your circumstances, so of course they will never, ever see the real me who’s sitting right in front of them.

On top of that, my NP is infatuated with the power of medication to Make All Things Right Again. So, I have to watch myself. I can’t allow myself to appear TOO debilitated, because the whole meds thing is not for me. I have enough difficulty each day with my sensory issues, and adding a chemistry-altering (and possibly cognition-altering) drug to the mix just makes everything harder. I’ve tried to explain that to them, and they haven’t taken me seriously. They seem to believe, in some ways, that I’m just thinking about this all wrong, and that I just go see them because I’m lonely. They actually said that once, which leaves me shaking my head.

And that’s  a source of yet more threat stress.

So no, they have never fully grasped the extent of my issues, because not only am I concealing it all out of self-protection, but they’re also pretty convinced that their testing revealed the extent of my impairments — which aren’t all that much, compared to plenty of others they’ve worked with.

It’s been a source of intermittent frustration and pain for me over the years. It’s no fun, not being believed, being dismissed, etc. And they’re one of the good ones. Huh. How ’bout that.

So, where does that leave me with my TBI recovery? Actually, I think I’m going to be in better shape in another couple of months, when I can get away from the “therapizing” approach, and move on to a more consultative relationship. The new NP that’s being recommended is a great clinician, apparently. Very smart and sharp. Plus, they are into imaging in a big way. They’ve written research papers on it, so they’re a bit of a “gear head” in that respect.

In speaking with my NP, they’ve warned me away from just going with any old NP and doing the kind of work that I’ve been doing with this NP for the past 8 years. Others wouldn’t necessarily grasp the subtleties of my situation (I’m not sure what they mean by that, but I’m not sure I want to know) . And yes, upon giving it more thought in light of the awful variability of providers out there — and now this info coming to light about how NPs can be dismissive and well, kind of clueless when it comes to concussion — I have to agree.

Which is where I come to my new approach.

I’ve had it with the navel gazing that my old NP has been pursuing. I mean, it had its place for a while, but now I simply need access to someone who can consult with me on all things neuropsychological, explain function and cause-and-effect to me, help me understand the dynamics of brain and behavior, and just be there as an access point for technical questions.

I’ve needed this for years, but my old NP hasn’t been able to provide that to me. They’ve been more focused on helping me conceptualize my life as more than just a series of injuries, than going into scientific and medical explanations. That’s been helpful, yes. But I could really use access to an expert who can walk me through the details and vagaries and help me understand the anomalous aspects of my life.

So, this could be good. And I don’t have to deal with any more navel-gazing from an NP who doesn’t even realize they don’t have enough information to draw in-depth conclusions about my life and experience and difficulties.

AND I don’t have to deal with an NP who’s going to just dismiss me and write me off. The relationship I’m going to develop with them will be a consultative one, not a counseling one. I don’t want them feeding my head with more subjective “soft science” stuff. I need hard science, the facts, the explanations, the cross-references and objective recommendations. I think that’s going to save me a lot of grief. And waste a lot less of my time. And theirs.

It’s all good.

Onward.

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Author: brokenbrilliant

I am a long-term multiple (mild) Traumatic Brain Injury (mTBI or TBI) survivor who experienced assaults, falls, car accidents, sports-related injuries in the 1960s, '70s, '80s, and '90s. My last mild TBI was in 2004, but it was definitely the worst of the lot. I never received medical treatment for my injuries, some of which were sports injuries (and you have to get back in the game!), but I have been living very successfully with cognitive/behavioral (social, emotional, functional) symptoms and complications since I was a young kid. I’ve done it so well, in fact, that virtually nobody knows that I sustained those injuries… and the folks who do know, haven’t fully realized just how it’s impacted my life. It has impacted my life, however. In serious and debilitating ways. I’m coming out from behind the shields I’ve put up, in hopes of successfully addressing my own (invisible) challenges and helping others to see that sustaining a TBI is not the end of the world, and they can, in fact, live happy, fulfilled, productive lives in spite of it all.

3 thoughts on “What’s a neuropsychologist good for after #TBI?”

  1. Hi BB. Executive function damage is well known to show up poorly in neuropsych ‘office’ situations, better if they visit at home and have a wider contact/knowledge of you in your life/community. Caution about taking drugs such as antidepressants shown to be justified with recent research such as https://vestibular.org/news/01-28-2015/anticholinergic-drugs-meclizine-can-lead-dementia. It will be interesting to see if you feel your new neuropsych helps you more. I have recently found it very helpful after 15 years to finally stop going to such people, though I know they are there if there is a need to refer back sort of thing. To see them as the human beings they are.. Good luck with it all.

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  2. Thanks – yes, I’m headed in that direction, myself. I’m going to approach this new neuropsych as a technical subject matter expert who can consult with me on things. I just need someone who knows about neurology and how it affects behavior and experience. I don’t want them to treat me — just provide info I have no access to, otherwise. I’m actually relieved my old NP is retiring. Their approach has become a little irritating. New year, new start! Looking forward to finding out how it develops.

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  3. Oh, and yes – meclizine does nothing for me, other than making me feel even more dull and out of it. It’s a terrible drug to give someone with a history of TBI, and yet, it was once prescribed by an actual neurologist. I already knew they were “intellectually challenged” from other interactions with them, so I knew not to follow their lead. You’ve gotta watch these experts, sometimes…

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