Preventing PCS – What are We Waiting For?

Seems like this is what our pipeline of concussion/TBI knowledge looks like
Seems like this is what our pipeline of concussion/TBI knowledge looks like

I’ve been really bothered, over the past several months, about how we actually know what can mitigate and prevent PCS symptoms. We’ve known this for 10+ years. And yet, the consistent, systematic application of this knowledge has not been achieved at a national level.

PCS, once developed, is difficult to treat . . . Kelly [123] observed that post-concussional symptom rates were higher when patients were given no explanation for their symptoms. Minderhoud et al. [124] gave patients a manual that contained information about the nature, causes and expected course of recovery, advising that any symptoms could be expected to attenuate and gradually remit after an initial period of rest followed by gradual resumption of work or school. They evaluated the effectiveness of this information retrospectively and found that, compared to a control group, the patients had fewer symptoms 6 months post-trauma. Gronwall [125] reported a similar effect when a booklet about the symptoms of concussion and how to cope with them was given to mild head injured patients. At a 3 month follow-up, control subjects were nine times more likely to be symptomatic than patients who had received this type of information. Alves et al. [122] randomly assigned patients to treatment or control conditions. In the treatment condition, information was given about the nature and prognosis of mild head injury symptoms, with reassurance that recovery would be uncomplicated and complete. In contrast, controls were discharged with instructions to return to the emergency department in the event of persistent problems occurring. The treatment condition was associated with a lowering of the relative risk for persistent post-concussional symptoms at 6 months follow-up. [WOOD RL1: Understanding the ‘miserable minority’: a diasthesis-stress paradigm for post-concussional syndrome. Brain Inj. Nov;18(11):1135-53, 2004].

So, we know what can help.

But we’re not doing it all across the board. Some places do, with some hospitals offering booklets and info pamphlets. But it’s routine. It’s not a standard of care, apparently.


Seriously, people, it makes no sense for 10-15% of the population to be embarking on extended convoluted “adventures” of disconnection, dis-ability, and suffering, when something as basic as a booklet and reassurance from a trusted source / authority, has been clinically shown in multiple instances to reduce the incidence of post-concussive symptoms.

It boggles the mind. Information is so freely available, these days, and so readily accessible. Putting it into a format that’s easy to read and “digest” is not hard. We have legions of technical writers and infographic designers who can — and do — translate complex scientific information into bits that are accessible to everyday people. The general population is not only  more comfortable than ever before with scientific information, but our ability to convey sophisticated material in a straightforward manner has improved by leaps and bounds since the 1996 Ruff paper — even the 2004 Wood paper.

So, what are we waiting for? PCS is no joke. And apparently, it’s at least partly preventable. It was in 2004, anyway. What are the chances that’s changed in 10 years? Maybe new information has come to light? Or maybe not. Maybe we’ve been so caught up in our brain injury awareness campaigns that focus on how horrible and life-threatening it can be, that we’ve completely skipped over the interim step of helping those who have been injured — and need additional interventions to keep from descending into the hell that post-concussion symptoms can bring.

Concussion and brain injury can never be completely avoided. It’s a fact of life, no matter how advanced our helmets and automotive restraint systems may be. You walk around on the earth, and you run the risk of hitting your head – hard – on something. Or getting hit, yourself, only to see your entire life change.

But the fact that education and information is prophylactic against PCS seems to have gotten lost in the narrative of How Horrible Traumatic Brain Injury Is. I hate to be cynical, but I can’t help but think it’s mighty hard to drum up legislation and financial support for an injury that can be mitigated by something as “simple” as a well-designed booklet, some honest professional reassurance, and a few weeks’ rest & recuperation.  Stories of successful avoidance of PCS — and recovery from symptoms — don’t do much to fuel critical new developments in helmet design and rule changes. And it doesn’t encourage a change in behavior that steers us clear of risky choices and self-destructive actions. The Concussion Prevention Machine grinds on and on.

On the other hand, those who do get brain injured exist as evidence of our collective “failure” to protect each and every human being from concussion / brain injury. So that’s uncomfortable, and people would rather not think about it, frankly. They don’t want to talk about it — address it head-on, so to speak — because it implies a surrender to a condition that so much time and energy and re$ources are going into preventing.

And yet, our cynicism and fear and marketing campaigns obscure an serious interim neglect of acute issues. It’s a significant failing of our healthcare system and our society in general.  Right in front of us are indications of a potential PCS solution we’ve been needing for years. And this approach may actually do some good. But what are we doing about it?

Not much constructive.

Here and there, yes. But not all across the board.

And that needs to change.

I believe it can. But we need to redirect the conversation away from the horror and towards constructive steps that actually do some good. The steps may not be dramatic and earth-shattering enough to make the front page or the evening news — or even everyone’s Facebook feed — but they can save lives, and save a whole lot of suffering in the meantime.

And I think that’s a goal worth pursuing.

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.

Talk about this - No email is required

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.

%d bloggers like this: