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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11 thoughts on “Hey, wait – maybe PCS isn’t a *real* problem?

  1. Really nice article. My husband experienced this first-hand. His TBI was noted in the accident report, but then missed, and later dismissed by his treating doctors. It prevented him from getting timely care, very frustrating. Our persistence and finally being connected with a brilliant doctor is the only reason he is now getting the care he needs. Not right.

  2. Perfect insight and proper interpretation of these guidelines. Also, notice there are NO TBI survivors or nurses helping to set these guidelines. I would challenge every TBI survivor, regardless of mild, moderate and severe and I will bet 95% of total population with TBI will find some very disturbing information about their personality, physical or mental state in a negative connotation that will last their entire lives. These statements are “subjective” to the healthcare professional, but because they are professionals it becomes “objective data”. These charts are passed from one to another. HIPAA is violated frequently! Keep giving all your symptoms because eventually in many years to come they might figure it out! Every one with a brain injury has a sensitive brain, and medications can kill easier than the rest of the population.

  3. Not right, is correct. And it happens all the time. I keep waiting for people to get hold of the right information. But I’m not holding my breath ;)

  4. Yes, now I’m regretting saying anything positive about these guidelines. I’m going to keep reading — and keep taking issue with the BS that’s perpetrated. There’s just so much of it… how depressing. Oh, well, I guess it’s one extended “teachable moment”.

  5. The ICD-9 is used for the medical diagnosis. DSM-IV, soon to be DSM-V, is focused on psychiatric disorders. I am concerned about the disconnect, though. No loss of conciousness required! Really? As for distruption of function question… if your symptoms impair your life, by your report, most of the treating professionals take that. Mental health isn’t as measureable on tests as physical stuff. I agree, though, they need to talk to professionals in head trauma. My friend and I were just talking about this. Medical really needs a head injury speciality.

  6. Head injury specialty in medicine — that would be a great development. There are orthopedists and podiatrists and gerontologists, why not “concussionologists” or somesuch?

  7. there are neuro phycs tests that mental health providers use, the problem with those test, no standardization, only generalization and open to interaptation from the tester. good luck with the readings and keep us posted…

  8. Heh – no sooner do I decide I’m going to study the whole document and report back, than I get BUSY at work. Hm. And I get sick as a dog and can hardly move (except when I’m working). More to come.

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