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.

 

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.

10 thoughts on “The emphasis is on persistent symptoms”

  1. Oh how complicated life is with a TBI. Don’t be so hard on yourself. You are functioning at your optimal level. It may be less than before, but it’s your present best. I’m much slower at reviewing the guidelines, but I am doing so…after I printed off the 150+ pages. We do what we can to compensate and keep moving forward.

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  2. The oft repeated claim that most people who suffer a concussion will recover completely is patently wrong. Every person who suffers a concussion will have life-long damage to their brain.

    The ‘fully recovered’ claim only relates to obvious symptoms. The brain will be more sensitive to later impacts. It will be sensitive to every form of stress, physical, emotional, and chemical (alcohol, drugs, food additives).

    The ‘fully recovered’ or ‘recover completely’ claim can also relate to the many patients with persistent symptoms who just give up complaining to the doctor, either due to the doctor not offering any help, the doctor not listening, or financial costs, etc. Since there is very little a doctor can do for prolonged mTBI or Post Concussion symptoms, the first reason is the most likely.

    A leading concussion specialist suggests recording any head impacts in the medical record under IDC-9 850.9, unspecified impact to head, so that later complaints can be related to the prior possible concussion.

    The OTF Guidelines are a good start but sadly lacking in thoroughness. By relying on published studies and articles, there are many issues left out of the discussion. The studies and published articles have too narrow of a focus (as most research does), leaving may important issue out of the analysis process.

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  3. These are excellent points, Mark. Glad you’re making them. One of the reasons I’m posting about these guidelines is just that — there are a lot of holes that they don’t fill because they do rely on research and studies, and of course there is a whole ocean of pertinent data and information out there that gets swept under the rug because it’s not clinically recognized. If an mTBI sufferer’s life falls to bits, and no clinician hears it, do they really make a sound? So to speak…

    I think one of the reasons they make this claim is so-as not to alarm parents and everyone else out there who thinks that concussion –> brain damage, and they have a terrible perception of what it means to be brain injured. It’s criminal, really, how much damage is done by this perception and the prejudice that comes along with it.

    Thanks for the note about the medical record – unspecified impact to head. It could be good for people to know about, so they can mention it to their docs later on.

    We’ve got a long way to go, but if we keep discussing all this openly we may keep the conversation going and help more folks understand the ins and outs of this complex issue.

    Thanks for writing.

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  4. I read or scan/read the entire OTF Guidelines. The critical issue they miss is the need for so many doctors to spend hours sifting through this report to just start to understand concussion. They need to be able to put the guidelines into two or three pages for quick reference. Then they need to convince the doctors that even their guidelines are just a preliminary set of guidelines.

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  5. Absolutely. There does need to be a “cliffs notes” version of this. Ideally, I’d like to see a professionally recognized working group produce abbreviated guidelines on an annual basis — perhaps in electronic format that can be updated quickly and easily.

    Lots of room for improvement.

    I could see where this might be useful in an academic setting, where folks are going to be digesting a lot of information, anyway.

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  6. I have heard those same things said to me… I should be better, I only hit my head. My personal favorites are “I hit MY head MUCH harder then you did, and I am FINE.” LUCKY YOU!!!! Or, “My cousins sisters boyfriends uncles son fell, hit his head was out for 20 minutes and HE has no problems.” To that I say, are you sure? I mean, if not, I am glad for him, because this SUCKS. But do you say that just b/c they look ok? And, I have heard that I blame my head injury and let it get in the way of things. So sorry that I do what I can but there are things I still need help with! And excuse me for not always feeling up to the activities you want me to do!!
    Sorry. I guess I went off a bit there, but I wish ppl really knew what it felt like. W/O them being affected for life, of course!!

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  7. They need to be told the axiom held by those doctors who understand the unpredictability of head injuries, “If you’ve seen one brain injury, you’ve seen ONE brain injury.”

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