Hey, wait – maybe PCS isn’t a *real* problem?

Don't worry... be happy... right?

Just kidding — that’s my attempt at being facetious and draw attention to some of the absolute absurdity that the DSM-IV once again brings our way.

I’ve heard people talk about how DSM diagnostics are decided — apparently there’s a committee of powerful, politically connected psychiatry insiders who all get together in a room behind closed doors (literally) and bargain to see who gets to define which syndrome or disorder. Hmmmm… Sounds dicey to me.

And yet, their pronouncements rule the day. And they hold the keys to the castle with the insurance companies, as well as how we define and understand ourselves, based on “professional opinion”. Their little jockeying-for-position games behind closed doors can — and do — ruin lives. Not least by way of coming up with bogus definitions that clueless therapists and counselors and healthcare providers rely upon to conceptualize conditions and treatments.

My reading of the ONF guidelines for persistent mTBI symptoms has hit a speed bump. My initial enthusiasm has been quickly cooled — as it often is. I guess I had a bit of an impulse control problem, when I started reading their guidelines. I was so excited that someone had put together something comprehensive for healthcare providers, which actually focused on long-term issues of mild traumatic brain injury. Fortunately or not, my double-take happened pretty early on — around page 7, when they started to go on about DSM-IV diagnoses for PCS and PCD.

Apparently, PCS is a syndrome where you just *think* you’ve got a problem. There’s been no neuropsychological testing to prove it (though actually getting access to that testing can be all but impossible, and even when you do get tested, whether or not you get someone good is all too often a coin-toss).

Now PCD, that’s a real problem, being verified by neuropsychological testing and evidence of “significant impairment in social or occupational functioning”. My next question is, who gets to decide what constitutes “significant impairment”? If my post-TBI symptoms persist in making me utterly miserable for years after the fact, but I can still hold down a job and carry on a semblance of a conversation, does that mean I’m not really that bad off? (This really brings to the fore the need for real, solid, in-person education, like the “You Look Great” videos and book by John C Byler. Check them out, if you can — the YouTube videos, especially.)

What’s more, the DSM-IV PCD/PCS definitions talk about loss of consciousness being a requirement for concussion. Please take note, doctors and patients alike:

You Do Not Have To Lose Consciousness To Sustain A Concussion

A temporary disruption of consciousness will do just fine, thank you. Fogginess, dizziness, feeling out of it… that can indicate concussion, also.

Anyway, considering these guidelines from the ONF are intended for doctors who are diagnosing and treating concussion/mildTBI folks, this inclusion of DSM information really worries me. It’s so obviously slanted towards psychology, when traumatic brain injury’s nature is so physiological in nature. The separation between brain and body that the psych mainstream insists on maintaining is a little bit creepy, actually. Here are all these people walking around in bodies, living physical lives, dealing with people who have genuine physiological bases for their state of mind, and yet magically the body doesn’t matter. It’s like the psychiatric diagnosis-definers of the world have problems with their own physical realities, so they expect everyone else to be as divided and dismissive as they are.

How is it possible that a whole scientific field (though Sheldon from Big Bang Theory would probably dispute the scientific-ness of psychology/psychiatry) can discount half (or even more) of the human experience? It’s sad. And pretty awful that so many impaired people have so much power.

In shutting out the physical, they draw much of what they purport into question. Their guidelines and diagnoses patently discount a massive chunk of contributory information. How can you take them seriously, when they make claims that post-concussive issues are “subjective”? As though it’s all in our heads and we’re just looking for attention. And yet, they’re the ones making the rules and deciding whether or not we get care — and what kind we get. So, we have to take them seriously. As a heart attack.

It's all in your head

The DSM definition of PCS — which includes “Subjective concentration, memory, or intellectual difficulties without neuropsychological evidence of marked impairment” and “Preoccupation with above symptoms and fear of brain damage with hypochondriacal concern and adoption of sick role” has Münchausen syndrome written all over it, and seems to me to breed dismissal, neglect, and opens the door to a whole course of “treatment” for a psychological condition that doesn’t even exist.

Of course, it wouldn’t be the first time the psychiatric industry were playing fast and loose with other people’s lives, in hopes of getting people “back to normal”. Talk to historians (or check Google) about marginalized populations , like Native Americans, African-Americans, non-compliant women, gay people, and just about anybody who has been considered “abnormal” by mainstream society, and you’ll find generations of evidence of psychiatry being used to further the dominant paradigm, and decide who’s fit to belong and who’s not.

In the past couple of generations, with the rise of pharmaceutical “solutions” to mental health issues, psychiatry has been used tons of times to further the profits of big pharma, and their influence reaches into every aspect of our lives. It would seem at times as though psychiatry and psychology were just the vetting mechanisms to identify which drug should be prescribed — not if any drugs are really necessary at all.

And this is what gets me the most. Because if you’re saying that Post-Concussive Syndrome is a “subjective”, “hypochondriacal” psychological condition, and you reach for the prescription pad, you may very well be headed down the wrong path entirely. TBI makes a lot of people react completely opposite to drugs than the rest of the population, and it can make you intensely sensitive to even minor doses, which not a lot of people realize.

Another thing that worries me about including DSM stuff early in the ONF guidelines is that if docs read that up front, they could be led to think that, “Well, it’s not a REAL problem that I can address — it’s actually something that’s in their head and they’re better off seeing a counselor. Furthermore, if I allow this patient to entertain fantasies about their being sick, I’m just encouraging their malingering and rewarding their Münchausen syndrome. And I don’t want to do that.” And they may ship ’em off to psychiatrists who whip out that prescription pad and send their new charges straight to the fires of aggravated TBI symptoms – probably without even realizing it.

And off we go down the road to hell… With clueless doctors staying that way, and TBI survivors continuing to struggle and fall deeper and deeper into the hole of no-answers, no-options, no-hope.

Good God.

So, there’s my speed bump meditation for the day on the ONF guidelines. As always, with mild TBI, it’s caveat emptor, when it comes to getting good information. Buyer Beware — someone with either an agenda… or misplaced loyalties/trust… or a need to take shortcuts… or a sense of extreme urgency (or a combination of all of the above) might be playing fast and loose with the facts of the case, for their own gain and profit — not yours.

Which is why we survvrors and those who care about TBI survivors need to keep vigilant and guard ourselves against unmitigated nonesense. Fortunately (for me, anyway), my constant restlessness and TBI-enhanced anxiety and vigilance keeps me on my toes.

I just hope the same can be said for others.

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Hey, wait – maybe TBI isn’t a *real* problem?

D’oh – sorry – I meant to say “PCS” not “TBI” — I’ve posted this under the proper title.

Hey, wait – maybe PCS isn’t a *real* problem?

Click here to go there now >>

PCS vs. PCD

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

I came across something interesting the other day when I was looking at the PDF Guidelines for Mild Traumatic Brain Injury (MTBI) and Persistent Symptoms from the Ontario Neurotrauma Foundation, namely, the difference between Post-Concussion Syndrome and Post-Concussive Disorder.

Apparently, they’re not the same. I had thought they were interchangeable, but I guess they’re not.

Diagnostic Criteria for Post-Concussion Syndrome (ICD-10)
A. History of head trauma with loss of consciousness preceding symptom onset by a maximum of 4 weeks.
B. Symptoms in 3 or more of the following symptom categories:

  • Headache, dizziness, malaise, fatigue, noise tolerance
  • Irritability, depression, anxiety, emotional lability
  • Subjective concentration, memory, or intellectual difficulties without neuropsychological evidence of marked impairment
  • Insomnia
  • Reduced alcohol tolerance
  • Preoccupation with above symptoms and fear of brain damage with hypochondriacal concern and adoption of sick role

Diagnostic Criteria for Postconcussional Disorder (DSM-IV)
A. A history of head trauma that has caused significant cerebral concussion.
Note: The manifestations of concussion include loss of consciousness, posttraumatic amnesia, and less commonly, posttraumatic onset of seizures. The specific method of defining this criterion needs to be established by further research.
B. Evidence from neuropsychological testing or quantified cognitive assessment of difficulty in attention (concentrating, shifting focus of attention, performing simultaneous cognitive tasks) or memory (learning or recall of information).
C. Three (or more) of the following occur shortly after the trauma and last at least 3 months:

  1. Becoming fatigued easily
  2. Disordered sleep
  3. Headache
  4. Vertigo or dizziness
  5. Irritability or aggression on little or no provocation
  6. Anxiety, depression, or affective instability
  7. Changes in personality (e.g., social or sexual inappropriateness)
  8. Apathy or lack of spontaneity

D. The symptoms in criteria B and C have their onset following head trauma or else represent a substantial worsening of preexisting symptoms.
E. The disturbance causes significant impairment in social or occupational functioning and represents a significant decline from a previous level of functioning. In school-age children, the impairment may be manifested by a significant worsening in school or academic performance dating from the trauma.
F. The symptoms do not meet criteria for Dementia Due to Head Trauma and are not better accounted for by another mental disorder (e.g., Amnestic Disorder Due to Head Trauma, Personality Change Due to Head Trauma).

PCS is apparently a situation where you have head trauma with loss of consciousness (I think the DSM-IV needs to be updated, since concussion does NOT require loss of consciousness, and that fact has confused a lot of people and caused them to take concussion less seriously, when there was not LOC). And PCS is about “subjective” difficulties that haven’t been demonstrated with neuropsychological evidence.

Now, a couple of red flags go up for me — and it has more to do with the DSM, which I have some problems with anyway, than it does with the Guidelines. First, that loss of consciousness requirement. That can lead a lot of people down a flawed path. The other thing is the “subjective” part, which makes it sound a little bit like it’s all in your head? Well, technically, it is, but there seems to be a certain psychological aspect to it — then again, it is the DSM, so there you go.

Now, on to Post-Concussional Disorder… It requires a history of head trauma that has caused “significant cerebral concussion”. So, who decides what constitutes “significant”? Loss of consciousness, post-traumatic amnesia, seizures… What if you get totally messed up, but none of those things happened to you?

I think this is one of the first flaws in this set of guidelines — it relies on the DSM off the bat to psychologically define what are actually complex conditions that have very physiological roots and causes and issues. Plus, that thing about loss of consciousness… That’s troubling, as this may lead doctors astray — yet again — in to the weeds of gauging “how serious was your concussion” based on the injury itself, rather than the complex cascade of events and conditions after the actual injury.

But later on page 7, they go on to say

There has been debate as to whether persistent symptoms are best attributed to biological or psychological factors. It now appears that a variety of interacting neuropathological and psychological contributors both underlie and maintain postconcussive symptoms. One source of controversy has been the observation that the symptoms found to persist following mTBI are not specific to this condition. They may also occur in other diagnostic groups, including those with chronic pain, depression, post-traumatic stress disorder, and are observed to varying extent among healthy individuals.

So, it’s good that they’re acknowledging that there are complex contributors. And it’s good that they’re pointing out that symptoms we’ve got can also be found in other groups — though I have to wonder why it’s to be expected that a condition would have “only” certain symptoms that were all its own… I can think of a whole handful of conditions which “share” symptoms with each other, yet are not dismissed as made-up and are treated with care. Anyway, that’s another patch of weeds for another time.

I’ve said it before and I’ll say it again — traumatic brain injury is a continuously re-traumatizing condition that just doesn’t quit. It can linger and morph and transform both itself and you over the course of days, months, years… sometimes to the point where you don’t even recognize yourself and your life anymore.

Which is where we get into the drawbacks of a set of guidelines like this document. I’ve seen some comments by people about its limitations, and yes, I’m starting to see them now that I’m getting deeper into it. I’m only 7 pages in, after all. Initially, I was really excited that there were these kinds of guidelines, and I still do think they offer a great service, in that they attempt to speak directly to doctors and healthcare providers. In that respect, I don’t think that relying so heavily on research and clinical studies is such a bad thing. That’s what doctors pay attention to. “Anecdotal evidence” is viewed with a mix of skepticism and scorn in most medical circles I’ve encountered, and it’s only in the past ten years or so that “evidence-based medicine” has gotten much of a foothold in the mainstream. Now it seems to be quite popular, but still the clinical studies seem to be considered the gold standard against which other sources of information are measured.

So, for what it’s worse, for better or for worse, we’re stuck with clinical studies and limited research, to make our case with the medical establishment.

It’s a little bothersome.

[pause to regain composure]

But hey, at least someone is making the effort here.

And that’s a plus.

Anyway, on a personal note, my neuropsych is out of town for the next two weeks, so I’ll  have till mid-April to go it alone without someone to bounce ideas off of, and basically practice my everyday socialization chops. It’s funny, how those weekly visits serve to balance me out and keep me grounded. The times when I’ve gone it alone for a few weeks, I’ve shown up at their office a little loopy and straying back into the old territory I used to inhabit that was filled with chimeras and borderline delusions (in the loose sense — not real delusions — not yet, anyway). Somehow my neuropsych knows how to talk to me in a way that gets me to rethink my fundamental thought processes and come up with better ideas than I had when I first stopped in to see them.

I’ve always been independent to a fault, and now I find myself feeling dependent on a clinician. Ironic, that.

Anyway, it’s late and even though it’s Saturday night and I can sleep in tomorrow, I am absolutely bushed and I know it’s time to go to bed. I had a good day today. Did a lot of reading and writing and figured a few things out.

Onward.

The emphasis is on persistent symptoms

It’s been a quiet week, blog-wise. It’s been a very busy week, work-wise. I am glad of that, because it indicates that I am quite functional, which a good place to be at. I haven’t had much time for anything other than working, getting a little exercise, and then coming home to make supper, watch television, and go to bed. But that’s okay.

For now.

Ideally, I’d like to have my work and the rest of my life be more balanced out. I’ve got some other things I’d like to do with myself besides complete tasks for my employer. A 40-hour work week might be nice… but I’m not sure when that’s going to happen. So, I am looking for other ways to think about my job, other than it being just a job.

Anyway, I’ve been thinking on and off about the Guidelines for Mild Traumatic Brain Injury and Persistent Symptoms, with the emphasis on *persistent*. On Page 6 of the document, they talk about

Common Symptoms of mTBI

Physical

  • Headache
  • Nausea
  • Vomiting
  • Blurred or double vision
  • Seeing stars or lights
  • Balance problems
  • Dizziness
  • Sensitivity to light or noise
  • Tinnitus

Behavioural/Emotional

  • Drowsiness
  • Fatigue/lethargy
  • Irritability
  • Depression
  • Anxiety
  • Sleeping more than usual
  • Difficulty falling asleep

Cognitive

  • Feeling “slowed down”
  • Feeling “in a fog” or “dazed”
  • Difficulty concentrating
  • Difficulty remembering

It’s a short list, compared to the “batch” of 84 ways TBI can make your life really interesting I catalogued several years ago and have used as a guideline in my own recovery. But it’s a list, nonetheless. And they can cause a whole truckload of hurt. mTBI can really mess with your head in all sorts of ways, even if medical imaging can’t pick it up. Indeed, the ONF Guidelines say:

Computed Axial Tomography (CAT) and conventional Magnetic Resonance Imaging (MRI) usually fail to detect evidence of structural brain abnormalities in mTBI. However, reviews of recent advances in the biomechanical modeling of mTBI in humans and animals conclude that mTBI leads to functional neuronal disruption, and at times structural damage

Yeah – what they said: “functional neuronal disruption, and at times structural damage”.

Now, I don’t want to go all worst-case-scenario on you and start going on about brain damage and whatnot. My point is that even if mild traumatic brain injury can’t always be recorded in medical imaging, over the long term, it can lead to problems, even structural damage.

Researchers are still learning a lot about mTBI/concussion, and they have a ways to go before they fully understand all the mechanics and impacts of it. But at least they’re starting to “get” that this is a real problem for real people, and it’s to be taken seriously. They’re making the important distinction that

In most cases, patients who experience mTBI will recover fully, typically within days to months. The concern is that, as the Centre for Disease Control (CDC) notes, “up to 15% of patients diagnosed with mTBI may have experienced persistent disabling problems” (CDC, p.3). The consequences for these individuals may include reduced functional ability, heightened emotional distress, and delayed return to work or school (MAA NSW, 2008). When symptoms persist beyond the typical recovery period of three months the term post-concussion syndrome or disorder may be applied.

So, while the majority of people do recover on their own from concussion/mild TBI within days or weeks or months, the fact remains that there are a whole lot of people who don’t. And those people who don’t can be disabled by their symptoms and the issues that surround them.

And here we come to the domain of post-concussive disorder/syndrome — that twilight zone where things get all jumbled up for no apparent reason, and a whole lot of stuff stops making sense, and you start to hear things like…

“It’s been months, even years, since your TBI — why aren’t you better yet?”

“You look fine — why are you pretending to be sick?”

“This should be easy for you — why are you having such a hard time with it?”

Everybody seems to think that recovery from concussion is a given, but sometimes it’s not. Sometimes the symptoms last for years and years, and even the people closest to you, the people who you’d expect to understand that you’re not exactly the same as you used to be, can’t seem to get their heads around the fact that you need more sleep, or you need to think things through more slowly, or you need to have more routine, than the “average” person. And they judge you for it. Sometimes they give up on you. Which is — sorry — total bullshit.

Can I tell you, the last one — “This should be easy for you — why are you having such a hard time with it?” — is probably the toughest for me — and it’s especially hard hearing it from inside my own head. I swear, there are a whole lot of things that I am certain should make a whole lot more sense to me, than they do — there are things I hear that I feel I should understand, directions I receive that I feel I should get, and there are things I’m tasked with that I should be able to complete with no problem.

But for some reason I can’t. It’s like my brain isn’t working. I usually end up soldiering on and just having a go at it — giving it my best shot and keeping on trying till I get it right. But I swear to GOD, it is maddening. You would think that after all this time, I would be able to get my act together.

In a way, I think I’ve kind of given up trying to get everything back in place the way I want it to be, the way it’s comfortable for me. I guess I’ve made peace with the fact that I am probably not going to get a lot of things right the first time, but I need to just keep trying. There are so, so many things that I have thought I was doing right, then I found out I was doing them all wrong… then I’d look back, six months later, and wonder why the hell it was so hard for me. It just makes no sense. But learning new things — even refining old things — takes what feels like an eternity for me, sometimes.

Still, I can’t let it get me down. If I keep my energy up and keep myself reasonably healthy and engaged in my life, I can just keep going… just keep going… till I figure things out. I just need to keep moving, keep rethinking things, keep my spirits up and keep trying. And if I treat this as an adventure and a chance to explore and learn new things about myself, it puts my experience in a very different light.

And that’s a challenge, because over the years, my anxiety has gotten to the point where a part of me HAS TO HAVE EVERYTHING COMPLETELY UNDER CONTROL, or it freaks out. A part of me craves order and predictability, it relies on routine, and being able to plan and anticipate and properly respond to my life situations. It’s that part that helps me get my routines in order, helps me keep going, helps me keep fit for work and life. But that part of me is constantly frustrated, constantly thwarted by the other parts of me that have gotten rewired and turned around over the years. So, it’s a constant source of tension for me.

A creative tension, really.

And when I think about it, it’s not all bad… there are some good parts to that tension. It spurs me on to do better, to make positive changes in my life and in the lives of others. It moves me to improve. And it moves me to explore.

The most important thing is keeping an open mind — that’s what transforms my situation from a terrible, awful burden, to an opportunity to learn and grow. It’s when I don’t cut myself slack, when I forget that the issues I’m having are because of what happened to my brain, not what my own inherent self-worth is, not what others think my problem is, and NOT because there is anything wrong with me… that’s when things start to get dicey.

In a way, acknowledging that my issues are neurological is both a blessing and a curse. A two-edged sword. But for now, for today, I’m going to focus on the blessing part.

Because I can.

 

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…

Perfect for Brain Injury Awareness Month

Happy, happy, happy... so far

I just started reading the PDF from the Ontario Neurotrauma Foundation about Guidelines for Mild Traumatic Brain Injury and Persistent Symptoms. And I’m off to a great start.

These are

“guidelines that can be used by healthcare professionals to implement evidence-based, best practice care of individuals who incur a mild traumatic brain injury (mTBI) and experience persistent symptoms. Persistent symptoms are not an uncommon complication of mTBI; 10 to 15% of individuals who incur mTBI will continue to experience significant symptoms beyond the normal recovery period of three months (Iverson, 2005), which can include post-traumatic headache, sleep disturbance, disorders of balance, cognitive impairments, fatigue, and mood or affective disorders. With the high incidence of mTBI this potentially translates to a significant number of individuals who may experience associated disability.”

Currently, the best practice for treatment of those who do not experience spontaneous recovery is not clearly defined. Therefore, the following clinical questions needed to be addressed — Can an approach be devised to screen for and identify patients that are at  high-risk of persistent symptoms and, once identified, can a management plan be developed to treat the symptoms commonly associated with the disorder? Hence the purpose of developing the 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. (p.5 of the PDF – emphasis mine)

Reading this feels completely %(*&*#$(*^ awesome. Can I just say, to hear a recognized foundation acknowledge the importance of this, and to acknowledge that 10-15% of mild TBI survivors experience serious issues which can literally disable us (for long or short term)… it’s pretty amazing. What a feeling.

I’m going to quell the impulse to rue my lost past, when so much was unknown, and the only explanation people could come up with was that I “wasn’t trying hard enough” or I was “lazy” or a “problem”. I’m going to be deliberately happy for everyone who can and will benefit from this — and I’m going to urge everyone in the strongest terms possible to please make sure your doctor has a copy of this, when you see them about your issues. After all, this information is only as good as the people it informs — the people with the power to make a difference.

Granted, I’ve just started reading, and there may be information in there that doesn’t square with my own views and experience.

But so far, we’re off to a good start.

You can download the full PDF from the Ontario Neurotrauma Foundation here.

Guidelines for Mild Traumatic Brain Injury (MTBI) and Persistent Symptoms

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

The Concussion Blog post Now This is a Possible Game Changer has just posted some pretty great news about recognizing and responding to TBI/concussion. The Ontario Neurotrauma Foundation has produced “comprehensive, evidence-based, set of recommendations that broach all four parts of a concussion: physical, cognitive, sleep, and social/behavioral”.

This is important. Because up till now a lot of folks have been talking about TBI solely in terms of the physical OR cognitive OR sleep OR social/behavioral issues. Rarely have I found a professional organization addressing them all in one place.

I’m also very hopeful because this information comes from a neurotrauma foundation — the kind of information source that doctors and other healthcare professionals may just take seriously, instead of blowing off patients who have a host of issues and “complaints” that make no sense to them on the surface.

I just downloaded the full pdf of the guidelines yesterday, so I haven’t had a chance to go through it all, but from my skimming last night, it looks like there might be some good stuff in there. I hope to spend some time this weekend reading and digesting and writing about what they have to say.

Because as great as it is for there to be professional expansion on this, the fact remains that a whole lot of us folks “on the ground” don’t have access to good professional care, and sometimes the one hope/lifeline we have is online — the stories and information and interpretation of official information sources in language that we can actually understand. There’s a whole lot of science going on these days, but understanding it and getting what it all means is a different story. I hope to fill that gap a bit with my work on this site.

You can download the full PDF from the Ontario Neurotrauma Foundation here.

NEWS FLASH: Brain injury in high-def with fiber tracking

Amazing – this could be the break we’ve been looking for, in getting people to take TBI/concussion seriously.

U. PITTSBURGH (US) — New imaging technology will allow doctors to clearly see for the first time neural connections broken by traumatic brain injury.

High definition fiber tracking reveals loss of fibers, or connections, on the injured right side (yellow) and the intact, undamaged left side (green). The patient was injured in an ATV accident and lost function in his left leg, arm, and hand. (Credit: Walt Schneider Laboratory)

“Until now, we have had no objective way of identifying how the injury damaged the patient’s brain tissue, predicting how the patient would fare, or planning rehabilitation to maximize the recovery.”

HDFT might be able to provide those answers, says co-senior author Walter Schneider, professor of psychology, who led the team that developed the technology.

Data from sophisticated MRI scanners is processed through computer algorithms to reveal the wiring of the brain in vivid detail and to pinpoint breaks in the cables, called fiber tracts. Each tract contains millions of neuronal connections.

“In our experiments, HDFT has been able to identify disruptions in neural pathways with a clarity that no other method can see,” Schneider says. “With it, we can virtually dissect 40 major fiber tracts in the brain to find damaged areas and quantify the proportion of fibers lost relative to the uninjured side of the brain or to the brains of healthy individuals. Now, we can clearly see breaks and identify which parts of the brain have lost connections.”

http://www.futurity.org/top-stories/brain-injury-in-high-def-with-fiber-tracking/

Truly excellent writing — and reading

This is a profoundly insightful and important blog post.

Could This Be The Reason Traumatic Brain Injury Is Misdiagnosed and Untreated?

What is the real reason traumatic brain injury is misdiagnosed, untreated or under treated?  Do we have enough rehabilitation centers in America to accommodate 1.7 million people every year?  Is this a national problem or local issue? I cannot believe they missed the most obvious of all … brain injury. I was the patient with all the issues…but the healthcare professionals still expect you have it all together to let them know what’s going on.  What one does know is most head injuries, strokes, and many diseases of the brain are not classic in any way.  The emergency room personnel look for only the classic obvious symptoms: one sided weakness, dropping of the facial muscles, slurred speech, and others.  These are not necessarily symptoms that appear with the 1.7 million traumatic brain injuries every year.

Really great stuff. Should be a must-read for all medical folks.

It’s a wake-up clarion call about the treatment of people with brain injuries, and it’s the kind of message you really have to read several times to fully digest. At least, I have to read it a few times 😉

Read the whole piece here >>

I’m only going to great lengths to help myself, because no one else will

Happy Festivus Everyone

Festivus is coming. It’s an alternative celebration for the Christmas holiday season that provides an alternative to materialism and commercialism. I’ve come across it before, but it caught my attention again over at The Concussion Blog. Reading up on it, I see that it traditionally takes place on the 23rd of December, but you can celebrate it just about anytime.

You celebrate by:

  • Setting up an unadorned pole
  • Airing grievances against those who have failed you over the past year
  • Engaging in feats of strength – such as wrestling the head of house hold and pinning them (festivities aren’t over till the alpha gets pinned)

I don’t have a pole handy, and there’s nobody around to wrestle, but I’d like to start with the airing of grievances, just to warm up.

I came across an old rant I had written up a while back and saved in a folder on my computer. I wrote it (probably) a couple of years ago, when I was searching high and low for explanations about my symptoms, and why my life was falling apart as much as it was. Seemed like everywhere I turned, I could not get answers from doctors or neuros or other folks, and nobody seemed to think I actually needed answers. They all seemed to think I was crazy, and I was blowing things out of proportion. So, I decided to really take it upon myself to do something about that. This is the rant that bubbled up.

I’m only going to great lengths to help myself, because no one else will.

Either they cannot understand me
Or I cannot make myself understood
Or I cannot understand them
And/or they dismiss me
And/or they make fun of me
And/or they just tell me I’m wrong — they tell me what ISN’T, not WHAT IS, so that’s extremely unhelpful
And/or they don’t have sufficient medical knowledge to identify what’s going on with me
And/or they jump to conclusions before they can figure out what’s up with me
And/or they just write me a script for a med that DOESN’T WORK and then get angry when I come back and tell them it doesn’t work
And/or they treat me like a hostile malpractice risk
And/or they refer me to someone else
And/or they just humor me and try to get me out of their office asap, so they don’t have to feel badly about themselves and their lack of information

IF ONLY SOMEONE WOULD JUST TAKE IT UPON THEMSELF TO ACQUIRE MORE INFORMATION AND FILL IN THE BLANKS, RATHER THAN THROWING UP THEIR HANDS AND ACTING LIKE THERE IS NO ANSWER — SIMPLY BECAUSE THEY DON’T HAVE THE ANSWER(S) I NEED

I don’t think it’s too much to ask, that doctors show a little bit of intellectual curiosity

I don’t think it’s too much to ask, that they make a diligent effort to augment their knowledge on a regular basis — especially if there are clear gaps in their knowledge

I don’t think it’s too much to ask, that they simply admit they don’t know some things and make it their job to find those things out

Or maybe it is…

In the ensuing years, I’m happy to report that I have been able to get some help, but not from the folks I would expect it from. Even my neuropsych has been partly unsuccessful in understanding just how this all affects me. They are fond of telling me that my perception is a bit skewed, thanks to my past injuries, and they love to redirect my attention to the bright side of life. That’s fine, but sometimes I actually have to confront my issues head-on, so to speak.

The big disappointment has been with my doctor. At first, when I was telling them about my issues and explaining to them how it affects me, they were fairly receptive to the info. But I think their interest and involvement ended when I left their office. To this day, they are still not “up” on the details of TBI, and when I go to see them, they either skirt the issue of my TBIs or they act like they know all about them, because they talked to neurologist colleagues about brain injury a couple of times. They are still surprisingly un-clued-in to the issues and effects of them, and I sense a certain bias in them towards me because of my history. It’s like they still think I’m mentally challenged, because I have these issues. But frankly, I’m not in the mood to educate them. Not when I’m sick and tired and am having trouble just handling my own situation.

It seems to me that the lack of knowledge about TBI and concussion on the parts of medical professionals is a sign of systemic, pervasive negligence across the whole medical spectrum. For all the individuals who experience brain injury of some kind each year — and for all the other thousands upon thousands who have a history of brain injury or concussion — you’d think that doctors would exhibit at least a tiny bit of intellectual curiosity about the condition.

But no. It would appear that the medical profession has turned our doctors into highly compensated pill dispensers, just as the financial services profession has turned many a financial advisor into a highly paid sales rep for one “financial products” company or another.

And that’s just sad. I’m not sure how this can be possible. We have tons of focus on heart disease and cancer and many other medical conditions which affect fewer individuals than the legions of TBI survivors out there in the world. I’m not saying those conditions don’t matter and that they shouldn’t get attention — they do, and they should. But brain injury can have such a lifelong, pervasive, persistent effect on people and their long-term quality of life (oh, heck, ability to have a life), you’d think that learning about it and dealing with it would be a top priority for every medical school in the world.

You’d think it would be required continuing medical education, especially considering all the new advances and discoveries that are being made about it each year. You’d think that, with all the new material coming to light about a condition that affects every aspect of a person’s life, from relationships to lifestyle choices to health maintenance, people in a position to help might be just marginally interested in learning about it, over the course of years.

But no. Wave after wave of freshly minted doctors are washing up on the beaches of the medical world without so much as a clue about TBI. Career physicians who have been practicing for decades still persist in their stupidity about how brain injury makes a person immoral or retarded. And neurologists and GPs sit there and look at you like you have two heads, when you try to describe your symptoms to them — and can’t, because you’re all turned around in your brain.

Geez, what excellent fodder for Festivus. If only I had a physical to wrestle and pin… Or a pharmaceutical sales rep…

Ah, well, the day awaits. Here’s hoping I got this out of my system.