mTBI Guidelines and Persistent Symptoms – the scope of the work

Click the image to download the guidelines (156 pages - PDF)

I’m back to reading the PDF Guidelines for Mild Traumatic Brain Injury (MTBI) and Persistent Symptoms from the Ontario Neurotrauma Foundation, and I’m taking my time, because I want to really understand what they’re saying.

What’s jumped out at me right off the bat is that:

1. They take mild traumatic brain injury seriously. This is really important, because in the world of brain injury, attaching the word “mild” to the injury can make it seem like it’s minor. I’ve been told that using “mild” in describing brain injury is falling out of use, however, in the medical establishment, I don’t think that’s going to change anytime soon — the degree of injury at the time of the accident/assault/event determines what sort of immediate care you receive, so that gets on your chart and your medical record for all time, and in a way that’s kind of “who you become” in the eyes of the healthcare workers who deal with you from that point on. Even so, the ultimate complications may turn out to be way more than “mild”. Hence, it’s important to start out saying “We’re talking about ‘mild’ injuries, people, and yes they are serious and can have some pretty impactful long-term effects” — at one time, they are acknowledging the relative “mildness” of the initial injury and also setting the context for future discussion. In fact, using that apparent contradiction/paradox as a basis, might actually help to get their message across even more.
2. They emphasize the long-term effects and actually talk about them in terms of being immediately responsive and pro-active in how healthcare professionals address mild TBI. They acknowledge that there is literally no “best practice” clearly defined for treating folks who do not experience spontaneous recovery from mild TBI. And then they go on to use the sense that God gave them — they set about looking for an approach to “screen for and identify patients that are at high-risk of persistent symptoms” and also develop a management plan for the symptoms that are commonly associated with these symptoms. Pretty amazing… they actually intend to develop “clinical guidelines is to improve patient care by creating a framework that can be implemented by health professionals to effectively identify and treat individuals who manifest persistent symptoms following mTBI”.

I’m going to deliberately overlook the fact that the medical establishment has, up to this point, not felt it was important enough to actually do this before. Let’s not dwell on that maddening fact.

Let’s focus instead on the fact that someone is doing it now, and they are off to a good start, from what I can tell from the first 10 pages of the PDF. And they are coming from a medical standpoint, so the general practitioners of the world who are seeing all these folks who had a car accident or sports concussion six months ago and still aren’t getting any better, won’t be left out in the cold wondering WTF?!, when it comes to these types of patients.

That said, now it’s on to the next paragraph — on page 5, the Scope of the work. (I’m adding my own emphasis below)

The present guidelines are appropriate for use with adults (≥ 18 years) who have experienced mTBI. The present guideline is not appropriate for use with patients who have incurred penetrating brain injuries, birth injuries, brain damage from stroke or other cerebrovascular accidents, shaken baby syndrome, or moderate to severe closed head injuries. The guideline addresses early management to only a limited extent because the purpose of this document is to provide guidance on the assessment and treatment of persistent symptoms. Nonetheless, because early management can influence the development and maintenance of persistent symptoms, the most critical issues regarding early management have been incorporated. For more comprehensive guidance on prehospital and acute care, readers are directed to the Motor Accidents Authority of NSW ‘Guidelines for Mild Traumatic Brain Injury following a Closed Head Injury’ (MAA NSW, 2008,
http://www.maa.nsw.gov.au/default.aspx?MenuID=148). The present document targets healthcare professionals providing service to individuals who have experienced mTBI, including health care providers, neurologists, physiatrists, psychiatrists, psychologists, counselors, physiotherapists, occupational therapists, and nurses. (p5 “Scope”)

More good stuff. They’re clear about who this is for. It’s for adults who are least 18 years of age or older, who have experienced mild traumatic brain injury. This is an important distinction because the more we find out about mTBI and concussion, the more we realize that kids are affected differently than adults — small children are affected differently from teens and adults, and teens are affected differently from small children and full developed adults. I wonder if the 18-year cutoff might be a little controversial, since I’ve read/heard that the brains of males are not fully mature until age 24 or so. I’ve heard that all young adults have still-developing brains. So, I wonder if there might be a gray area around the ≥ 18 years qualifier. And I wonder if this isn’t going to spur more research and similar guidelines for teens and small children.

Anyway, the main point is that it’s a start at differentiating between adults and non-adults, and yes, that piece of information is important, too, because too many people — doctors and other healthcare folks included — aren’t fully up to speed on the differences. It’s also significant to me because in the world of mild traumatic brain injury/concussion, when adults are impacted and cannot get adequate care, everyone is affected — their spouses/partners, their kids, their own parents, their employers, their co-workers, everyone they interact with in the adult world. Their difficulties affect our whole system — our economics, our politics, the social fabric of our culture — in ways that kids’ issues simply can’t. So, coming up with guidelines for treating adults can have far-reaching benefits and consequences throughout the whole of society.

The next important distinction is that this “guideline is not appropriate for use with patients who have incurred penetrating brain injuries, birth injuries, brain damage from stroke or other cerebrovascular accidents, shaken baby syndrome, or moderate to severe closed head injuries.” This is an important distinction because mild TBI has its own set of “exciting” complications that don’t necessarily translate to other sorts of acquired or traumatic brain injuries. mTBI is in a class of its own — and yet, it can have confusing and frustrating overlaps and similarities with other brain conditions, such as stroke or birth injuries or penetrating brain injuries like gunshots or Phineas Gage’s much-studied case.

Mild Traumatic Brain Injury is in a class of its own, as so many of us can attest. And its initial complications can mutate into a whole host of other problems on down the road. Not taking it seriously, or trying to apply treatment/coping mechanisms to it that are really developed for other kinds of brain injury can be terribly frustrating and counter-productive. It’s important to acknowledge that this is a condition that stands on its own and needs to be considered and treated as a distinct condition.

And now we come to the proposed management strategy — They say they’re going to talk about early management only a bit, because they’re really talking about long-term issues that don’t resolve. It’s a good place to come from — being clear like that. At the same time, they do say they’re going to talk about early management, because it “can influence the development and maintenance of persistent symptoms, the most critical issues regarding early management have been incorporated.” So, I could see this document serving two uses:

1. To teach healthcare folks how to understand, treat, and manage long-term mTBI issues, to teach them to take it seriously — and also give them tools and information they can use to improve their medical practice.
2. To heighten awareness about all the crap that can go wrong, if you don’t manage the injury properly at the start — a kind of wake-up call for the healthcare folks who dismiss concussion and mild TBI as something that “takes care of itself”. 10-15% of mild traumatic brain injury survivors don’t spontaneously recover — and I wonder how much that might change, if the injury were properly managed from the get-go.

And then they give us a link to more comprehensive guidance on prehospital and acute care which is great – I checked it out and there is a lot of information there. Too much for me to get through right now. Since I’m working on my focus and not getting distracted, I’ll focus on the ONF pdf before I go wandering off to other things 😉

So, whom do they intend to educate with this document?

• healthcare professionals providing service to individuals who have experienced mTBI, including health care providers
• neurologists
• physiatrists
• psychiatrists
• psychologists
• counselors
• physiotherapists
• occupational therapists
• and nurses

That’s a pretty comprehensive list, and I have my own individual hopes for how this document can shape the perceptions and approach of each. Here’s my wish list:

• For healthcare professionals providing service to individuals who have experienced mTBI, including health care providers — I hope that they gain a heightened awareness of the issues that mTBI survivors can deal with on a daily basis, and that they stop writing us off as malingerers and fakers, and start taking our issues seriously.
• For neurologists — I hope that they can find a common nomenclature, a common conceptual framework within which to place mild TBI. I also hope that they will stop dismissing us because our injuries were “mild” and that they’ll gain a greater long-term view of the consequences of their actions at the start of the injury management. Mild TBI is not an injury that always “just clears up” — when it doesn’t, the choices made and actions taken at the start, can have dire long-term consequences, which result in untold, needless, and often avoidable suffering.
• For physiatrists, physiotherapists and occupational therapists— I hope that, like neurologists, they gain a greater appreciation of the impacts that mTBI can have on a person, and connect the dots between the different aspects of the injury – physical, mental, emotional, and yes, spiritual. Being in rehab, it’s also so important for them to not fall into cookie-cutter responses to mTBI survivors, because our symptoms and issues can shift and change over time. Plus, at times, our issues can seem to be improving, when they’re really not — we may be able to better manage the pain and confusion and sensitivities, but they are still very much there and very much a part of our experience. So, please don’t dismiss them because we seem to be doing so much better.
• For psychiatrists, psychologists and counselors — I hope that they come to see that there can — and will — be physiological reasons for and connections with mental health issues that some of their clients have. I truly hope that they can somehow learn to see the physical aspects of mental health, and to acknowledge the neurological basis for many issues. Rather than trying to address certain problems at a psycho/spiritual level, it can be a whole lot more effective to address them at their physiological roots and foster better mental health by encouraging things like getting good sleep, exercising, and eating right. Acknowledging the neurological and physiological basis for some mental health issues is not caving in to the competition or losing ground to the “hard sciences” — it’s identifying concrete things that can be addressed through behavior modifications and support and focused intention — and in solving issues at the root level, you can get out of the business of constantly talking people back from the ledge, and helping them to live truly full and amazing lives. I honestly can’t imagine why a counselor wouldn’t want to get out of the “mental health maintenance” business and take on more of the work of true life transformation. Seriously — wouldn’t it be amazing if you went to work everyday and saw your clients doing amazing things with their lives, instead of just trying to stop them from screwing up, time and time again?
• And for nurses — I hope that this document helps raise awareness — just as it could for doctors and neurologists — only on a much more thorough-going basis. I had a relative, years ago, who was in a terrible car accident and sustained a brain injury in the process. But the nurses on staff treated her like she was being uncooperative on purpose. She literally could not speak properly anymore or lift/move her hands and body, but the nursing staff treated her like she was a cranky old lady who was coming off long-time Valium use — they treated her like a junkie going through withdrawal, when she had really been brain injured and was not receiving proper rehabilitative care. It wasn’t until a trauma doctor happened up on her and told everyone that she was in fact brain injured, that she started to get proper help. I don’t fault the nurses — they had every reason to believe it was antidepressant withdrawal that was causing the problems. But it wasn’t — it was a brain injury. And I spent every Tuesday and Thursday nights (after work) and most of the day Saturday for the next six months or so, sitting and working with and helping her to restore her ability to interact and relax and think and express herself, watching her improve each week. I really believe in the work that nurses do, and I really believe that if they were given the right information and properly trained about mild TBI, they could play a hugely important role in diagnosing and treating brain injury. I also believe they might be able to mitigate some of the conditions that exacerbate the effects of TBI. Just a higher awareness and also a genuine caring about what mild TBI can do to a person’s body, mind, heart, and sense of self, might make a real difference in the world.

So, those are my hopes for the audience of this document.

Now, how to get it into the hands of those who are best served by it?

That, my friends, is the question.

But I digress. I’ve written a whole lot about this matter, and it’s time for me to get on with my day. I’ll be reading more and writing more — rest assured, as this is really great stuff to “chew on”.

Happy reading…