Concussion/TBI Cluelessness: If you can’t measure it, you can’t manage it

The pieces are all there. Really, they are. We just have to put them in their places.

An interesting subject came up on Twitter, earlier today, and 140 characters is not enough to speak to it. So, this is my more considered contribution.

I sent out a slightly disgruntled tweet about how concussion / traumatic brain injury ratings really only apply to the injury itself — but they say nothing about the long-term effects of concussion/TBI.We need to consider the aftermath – with a different set of criteria that truly classify where a survivor is — and which helps them to get where they want to go.

I’ve said it before, and I’ll say it again — the real trauma of traumatic brain injury often happens after the injury itself. Compared to the maddening sh*tstorm that can follow you rest of your life, getting clocked / dinged seems minor by comparison. And unfortunately, it often gets worse — especially if you don’t get help right away.

It took me almost three years to figure out why all my money was disappearing, I couldn’t hold down a job, and my marriage was constantly on the rocks. I got help because I was desperate and relentless. And I got lucky.

Rating brain injuries based only on the physical injury is — to put it lightly — problematic. The TBI classifications of mild, moderate, severe are all linked to specific qualities of injuries, involving various degrees of loss of conscious, and other criteria. From the Northeastern University website – http://www.northeastern.edu/nutraumaticbraininjury/what-is-tbi/severity-of-tbi/, here’s what they say:

Mild TBI

• Brief loss of consciousness, usually a few seconds or minutes
• PTA for less than 1 hour of the TBI
• Normal brain imaging results

Moderate TBI

• Loss of consciousness for 1 – 24 hours
• PTA for 1 – 24 hours of the TBI
• Abnormal brain imaging results

Severe TBI

• Loss of consciousness or coma for more than 24 hours
• PTA for more than 24 hours of the TBI
• Abnormal brain imaging results

Which is great — for doctors and insurance companies. It gives them a way to grade the injury up front, so they can apply the necessary techniques to treat the injured party… and approve them for payment.

But after the injury, what? The literature/research on long-term outcomes after traumatic brain injury is not nearly as voluminous as, say, material applying to schizophrenia or depression. There’s a reason for that — as a society, we’ve really only started to pay attention to traumatic brain injury / concussion as “a thing”, in the last several decades. Certainly, there are folks who have known a whole lot about it, but if our society isn’t aware of it as “a thing”, then funding doesn’t flow to the researchers as readily, attention doesn’t get paid, and the kind of development that needs to happen for real success just doesn’t occur.

We’re much better off now, than we were just ten years ago, but we still have a long way to go. And one of the areas where we have a long, long way to go, is how we address long-term effects and issues after TBI/concussion. The dangers of CTE are real — but only for a certain group of folks (athletes who repeatedly bang their heads in the course of practice and competition). For the rest of us, the dangers are different, but no less daunting.

One of the things that I’ve heard repeatedly from readers on this blog, is that they’re just grateful I’m putting into words things that they feel and experience, but nobody seems to know about. Over the past 7 years (which has racked up 402,548 page views — over 100,000 of them in this past year alone), I’ve talked about my intense mood swings, confounding emotional lability, anger/temper issues, light- and noise-sensitivity, tactile defensiveness, depression, a sense of isolation and defeat, chronic pain, headaches / migraines, cognitive difficulties, memory lapses, as well as the many advances forward I’ve achieved through hard work, lessons learned, a bit of professional help, and applying what I’ve read from a whole lot of TBI research. I’ve bitched and moaned about quality of life issues, relationship troubles, job difficulties, money problems. And I’ve done my best to celebrate and give thanks for the many good things that have come into my life.

I’ve also tried to discuss these issues with others, who have alternately dismissed my concerns and talked me through conceptualizing them differently, so they don’t derail me. I have far more strengths than weaknesses, and my actual measurable impairments can be counted on the fingers of one hand. So, I have every reason to Focus on my Strengths, Not my Weaknesses. Be grateful for the good, and get creative with how I live my life. Don’t dwell on the hardships. Take heart – be brave. I’ll be fine, if I just keep working at things.

The knowledge about my measurable issues has been both empowering and defeating. On the one hand, it means there’s plenty of room for me to grow — and not a huge need for me to stress out and worry. On the other hand, I sometimes feel even more crazy for not having a better grip on things.

If I were anybody else, if I continuously thought, “Well, I didn’t lose consciousness for more than a few seconds, and my measurable deficits are relatively few, compared to others,” I might be inclined to give up. But I’m contrary. And I like to think for myself, so…

But countless other concussion/TBI survivors are dealing with dismissal and minimization on a daily basis. Once we recover from the physical injury — the lump on the head goes down, the headaches ease up, the all-consuming brain fog abates (somewhat) — we have very few places left to go. And should our evaluations turn up with numbers that make us look, well, pretty much “within range” for normal life, that reduces our options even further. Unless we can connect with someone who truly understands the scope and impact of TBI, we have to rely on the kindness of strangers whose willingness to “indulge our delusions” is our only ticket to any form of rehabilitation. Left unaddressed, persistent TBI-related behavioral, cognitive, emotional, and physiological issues can become an avalanche of hurt.

In the absence of neurological expertise, we so often have to turn to psychological approaches, which are geared towards mental illness, not structural brain injury. While they are much more robust and well-developed, pure mental health approaches carry a host of hidden dangers — among them, serotonin-suppressing meds that exacerbate our brain fog and depressive symptoms, and a type of emotional “excavation” (Tell me how you’re feeling, deep down inside – don’t hold back. Let it all out!) which follows transient emotional lability’s magically winding Pied Piper path to explore dead-end paths that have no substance in reality, but feel real enough to us, because of our neurological condition. My God, if I had a dime for all the times my neurological issues were mistaken for childhood trauma issues and I was encouraged to dredge up my deepest, darkest secrets because it was supposed to help me, I’d have no money problems. At all.

We really are in a wasteland of measurements and data, with regard to long-term outcomes for TBI/concussion.There are some post-TBI quality of life studies out there, but they are relatively sparse. And the fact that there’s so much self-reporting is a little troubling — quality of life scores could be based on anything, really, and conditions that have nothing to do with TBI could contribute.

What’s more, quality of life is a subjective rating. And it may not pinpoint the specific areas that need to be addressed. If you’re going to measure stuff, you need to be at least a little detailed and objective. The game of baseball, which is a relatively straightforward game, has a more advanced and complex (and universally agreed-upon) way of keeping track of the action, than TBI recovery. Throughout the sports world, stats collecting and tracking is a veritable art form — and that’s for entertainment, not a life-and-death health issue. We can’t manage to invent the same for TBI recovery? Really? Something is wrong with that picture.

The house is my ongoing situation. The vision is the established neuroscientific approach.

What’s even more wrong is that so many people who are in a position to actually take action and make a contribution to TBI recovery are failing to step outside their system-imposed box and simply consider — just for a moment — that there might be more going on with the concussion survivor in front of them, than what’s on their chart and what’s in the eval results from a test taken six months prior. Their focus too often stays on the quantifiable data, guiding them in a specific direction, while they ignore the gaping blind spot — a veritable case of advanced macular degeneration in the “sight” of the neurosciences industry.

I’m confident that eventually measurements will be developed for the right kinds of data. As more and more concussed/brain injured folks report about how absolutely shitty their lives have been after their injuries, and how much that’s cost their families, employers, communities, commercial ventures will be started to serve that “market”. Funding will appear for studies to help standardize the methodologies and terminology — as well as develop new billable treatments. A whole ecosystem will spring up to fill this need. It’s only a matter of time. But we’re not there yet.

Not even close.