#Concussion and mild #TBI – connected, but distinct – Part 1 of 2

Concussion is the cause. mild TBI is the effect

Back in 2010, I discovered the work that University at Buffalo is doing on concussion recovery. It was very exciting, and it sowed some seeds of compelling thought in my racing brain… and those seeds are now starting to sprout again — spring is on the way, right?

At the UB web page on concussion research, I found some interesting papers which talk about the difference between concussion and mild TBI.

In the paper Retest Reliability in Adolescents of a Computerized Neuropsychological Battery used to Assess Recovery from Concussion (bold is mine) they say:

A recent review … of concussion and post concussion  syndrome provided a model for distinguishing concussion from mild traumatic brain injury (mTBI) and post concussion syndrome (PCS). The model uses the most commonly accepted definition of mTBI and the one proposed by the American Congress of Rehabilitation Medicine and the Centers for Disease Control: loss of consciousness for no more than 30 minutes or amnesia as a result of a mechanical force to the head, and a Glasgow Coma Score (GCS) of 13 to 15 …. The model also uses the most commonly accepted definition of concussion as established by the American Academy of Neurology (AAN): a trauma induced alteration of mental status that may or may not involve loss of consciousness …. Although not explicitly stated in the AAN definition, concussion is generally viewed as a transient state from which the individual will recover fully in a relatively short period of time …. In contrast, mTBI is viewed as a permanent alteration of brain function even though the individual with mTBI may appear asymptomatic. Post concussion syndrome was defined in the Willer and Leddy … model as persistent symptoms of concussion past the period when the individual should have recovered (3 weeks) and therefore qualifies as mTBI. Neuropsychological testing is often used to describe the impairment associated with mTBI and PCS and have done so with relative success ….

So, basically, according to them,

• mTBI = a loss of consciousness for no more than 30 minutes or amnesia as a result of a mechanical force to the head, and a Glasgow Coma Score (GCS) of 13 to 15
• Concussion = a trauma induced alteration of mental status that may or may not involve loss of consciousness; it’s a transient state from which the individual will recover fully in a relatively short period of time
• Post concussion syndrome (PCS) = persistent symptoms of concussion past the period when the individual should have recovered (3 weeks)
• PCS, due to its enduring nature, qualifies as mTBI

(Note: I think more work needs to be done to to fill in the gap about how PCS satisfies the criteria for mTBI,  because — by their own definition — Concussion does not involve loss of consciousness or amnesia. So, POST-Concussion Syndrome would never include the LOC required for mTBI.)

Originally, I found this information compelling, and it helped me make more sense of the whole “concussion thing”. I’ve sustained a number of blows to the head in the course of my life, and I have been diagnosed with “Late effect of intracranial injury.” But oddly, until my neuropsych referred to my head traumas as “concussions”, it literally never occurred to me that I’d sustained one (or 9). I can get pretty literal in my thinking, and because that word was never used in connection with my injuries, I never once thought of my mild TBIs as concussions.

Now, over the course of the past years, I have repeatedly read that concussion and mild TBI are the same thing. And at first, it made sense to me. It was actually a relief, because for once, I could think and talk about my history of head trauma without implying that I was brain-damaged — which has a whole slew of problems attached. Brain damage doesn’t really get good press in the world I inhabit. Survivors are often portrayed as suicidal, homicidal, freakish, severely impaired, and/or the brunt of others’ ridicule, exploitation, or persecution.

When many people think of brain injury, they think of brain damage. I did, too, until around 2010. Technically, I suppose there is a damage element to it it. But none of my friends, whom I’ve told about my mild TBIs, would believe that I had sustained that many blows to the head. I was just too functional. I was just too … normal… At least, as far as they could see. My personality and behavior just didn’t square with the kinds of functioning and behavior they expected from someone who’d been brain-injured. That’s what they told me. I just wasn’t “brain damaged enough”, I guess.

Aside from other people’s ignorance and personal biases about this invisible injury, I’ve also had a hard time conceptualizing my mild TBIs as actual brain damage. I know that I have a number of physiological and logistical issues I need to navigate on a regular basis, and I know that my executive functioning is not what it could be. I know that my impulsiveness, poor planning practices, behavioral “irregularities”, and those danged emotional ups and downs are not typical for everyone around me. And while I’ve always struggled with those “irregularities”, I know my issues are a whole lot worse than before I fell in 2004.  So does my spouse.

But brain damaged? That term is so charged, and it brings up so many different images and impressions. It’s loaded with a not-so-great emotionally laden reaction, which I’m sure I share with others.

Beyond the visceral response… outside my own head and in the wider world around me… when I looked around, I was very uncomfortable with the idea that everyone who has their consciousness altered after getting clunked on the head has an injury to their brain. According to concussiontreatment.com, “An estimated ten percent of all athletes participating in contact sports suffer a concussion each season”, but I found it hard to believe that 10% of all athletes who compete each season are walking around with brain damage.Think about it — with multiple sports seasons per year, and athletes rotating in and out of sports, that’s a hell of a lot of people getting dinged.

And it’s not just athletes who get concussed. Plenty of other people fall down, too, or are in car accidents, or get beat up, or have things fall on their heads.

Here’s the CDC data for 2002-2006:

Estimated hospital treatment of TBIs 2002-2006 – Note: There is no estimate for the number of people with non-fatal TBI seen outside of an emergency department or hospital or who receive no care at all.

And the numbers have since increased — probably due to better data collection and more reporting by injured folks. As awareness grows, more people are inclined to treat their head injuries seriously and seek medical help. And medical providers are paying closer attention.

According to the CDC:

• In 2010, about 2.5 million emergency department (ED) visits, hospitalizations, or deaths were associated with TBI—either alone or in combination with other injuries—in the United States.
  • TBI contributed to the deaths of more than 50,000 people.
  • TBI was a diagnosis in more than 280,000 hospitalizations and 2.2 million ED visits.  These consisted of TBI alone or TBI in combination with other injuries.
• Over the past decade (2001–2010), while rates of TBI-related ED visits increased by 70%, hospitalization rates only increased by 11% and death rates decreased by 7%.
• In 2009, an estimated 248,418 children (age 19 or younger) were treated in U.S. EDs for sports and recreation-related injuries that included a diagnosis of concussion or TBI.
  • From 2001 to 2009, the rate of ED visits for sports and recreation-related injuries with a diagnosis of concussion or TBI, alone or in combination with other injuries, rose 57% among children (age 19 or younger).

And the numbers keep changing, increasing each year as reporting gets better. Just in the past several years, the CDC changed the number of annually reported TBIs from 1.7 million to 2.4 million, I have no doubt the figures will continue to rise.

Now, here’s the thing. If mild traumatic brain injury implies brain damage, then how come more people aren’t incapacitated? Thousands upon thousands of people sustain traumatic brain injuries each year, yet the general population doesn’t appear to be completely crippled by brain damage (though some people I know would debate that 😉 ) How is it possible, that so many people are injuring their brains, especially in their youth and/or in sports, yet so, so many are able to carry on as normal?

That’s where UB’s distinguishing Concussion from TBI made sense to me. It removed the implication of brain damage from a head injury. It offloaded the spectre of debilitation from the mix, and it gave it a name that actually removed the inscrutable black-box brain from it, period. And that made it a lot less scary to deal with.

At the time I read the UB paper in 2010, making the distinction between a concussion that is transient, and a head injury that’s a TBI made all the sense in the world to me. It made it possible distinguish between someone who’s experiencing irritating short-term issues, and someone who needs to deal with a broader-spectrum impact and a deeper set of challenges. And in doing so, the term concussion de-stigmatized the experience (at least in my mind). It steered my thinking away from the “concussion ==> brain damage” concept, which was intimidating and stymied my ability to think clearly about my injury.

I’m sure I’m not the only person who feels this way. I would imagine the thought of being brain-damaged could be disheartening and even debilitating to a youth who has hit their head while playing a sport they love… or to the parents who love them dearly and are concerned for their safety and future. And if someone who got rear-ended at a stop light is branded as brain-injured/brain-damaged, what does that mean for their career and their ability to live fully as an adult?

Calling a mild traumatic brain injury a “Concussion” solves a number of personal and social problems. It gives you permission to be injured for the time being, without making you permanently damaged. It gives you a word you can use with others without the immediate danger of being doomed to their eternal dismissal.  There are tons of potential ramifications and implications from believing that concussion is not necessarily a brain injury. And that helps in the public discourse, as well as in the privacy of your own personal life and personal thoughts.

And yet… over time, that distinction has worn thin in my mind. There’s something about using the word “Concussion” that doesn’t square with me.

To be continued…