Getting MTBI diagnosed sooner for better medical outcomes

I’ve been reading more this article: Mild traumatic brain injury in persons with multiple trauma: the problem of delayed diagnosis and I’ve been thinking about why MTBI tends to be overlooked by doctors treating folks with multiple injuries (multi-trauma).  I’ve also been thinking about what benefits might come from diagnosing a mild traumatic brain injury along with other injuries.

I hear it time and time again – from people who read this blog, to people who post on forums, to people who post to comments on websites about mild traumatic brain injury – they got hurt, but the doctors didn’t pay any attention to the TBI issues they were having. This is especially true of veterans who return with a host of issues, with their physical injuries taking precedence.

Obviously, it’s easier to assess and understand physical injuries like broken bones and torn muscles. You can see them, you can measure them, you can tell when they’re healing and measure how well they’re being repaired. But the treatment of these injuries is just the first part, and long-term it seems to me that diagnosis and treatment of any brain-related issues goes hand-in-hand with the treatment of bodily injury.

Because one of the keys to a good recovery is compliance with doctors’ orders. And compliance can depend on a number of things

  • first of all, understanding what the doctor(s) said,
  • secondly, understanding the need for following instructions, and
  • thirdly, having the capacity for following those orders independently over the long term.

If the brain has been injured, it undermines you in at least three ways:

  • First of all, it can make it hard to understand what the doctor(s) said, and (perhaps worse) it can make it hard to know that you didn’t understand. You can’t very well ask for clarification, if you don’t realize you need it. And when you have TBI issues around organizing your thoughts and making yourself understood, it complicates that very critical first step of comprehending what your doctor is telling you about what’s wrong, what you need to do, and what you can (or cannot) expect to happen as a result of your treatment.
  • Secondly, TBI can undermine your ability to understand the need for following instructions. If you don’t understand why you need to follow the doctor’s orders, the chance of motivation is a whole lot less than when you know why you should do what they’ve told you to. Compliance with doctor’s orders is notoriously difficult, and a lot of people just don’t do it, even when they do understand everything that’s been said to them. Take away that ease of understanding, and you’re further complicating an already challenging situation.
  • Thirdly, TBI can reduce your capacity for following those orders independently over the long term. This can be cognitive or energetic. If you’ve got big problems with fatigue and confusion and organizing your thoughts, and your entire life becomes a trial, day in and day out, and you have your hands full, just doing the stuff you’re familiar with, what are the chances of you going above and beyond to take on extra-ordinary activities to further your healing? The issues you have at the outset may continue unabated — even worsened — over time. And even if you start out fully compliant, if you don’t have the ability to sustain your efforts, your long-term recovery can be dramatically impacted. For too many TBI survivors, life can be so draining and confusing that even the most basic of activities leave them exhausted and depleted, frustrated and agitated, and them have no energy left to go above and beyond. So, long-term maintenance — or choices for extended recovery — can fall prey to that dynamic.

Personally, I’d like to see doctors be better educated about TBI in general — especially because of these issues which can directly impact not only quality of care but quality of outcomes. Improving outcomes is everyone’s desire, so why not address these issues from the get-go, and help patients gain a better understanding of their total situation, so they can take appropriate steps to offset the effects of a brain injury?

Part of the problem, that I can see, is a dearth of medical knowledge about mild traumatic brain injury. It’s not difficult to find research on severe or even moderate brain injury, especially where there was some external injury. That’s quantifiable, it’s measurable, and it graphs well. You can track it. With mild TBI and/or closed head injury, when results don’t show up on the CT scan or other imaging/diagnostic mechanism, you’ve got a conundrum. And when the doctor in question doesn’t have the perspective of pre-morbid (before the injury) behaviors and experiences, how can they actually tell that something has happened that is out of the ordinary?

Medicine as we now know it isn’t particularly well suited to recognizing and addressing mTBI, and in failing to do so, the quality of care — the possibility of quality of care — can be pretty strongly diminished.

Which is a shame. Because nobody wants to pour all their time and energy down a gaping black hole. But by ignoring mild traumatic brain injury in multi-trauma situations, by the force of sheer ignorance, that’s exactly what people are helping to make possible.

So, what can be done about this?

  • Well, education helps, for starters. An understanding of the actual impact of mild traumatic brain injury on cognition (I’m not talking about IQ, which is a completely separate issue), mood, behavior, and willingness to engage with the world, may help.
  • Also, making education a priority not only for doctors but also patients is a good step. Making sure patients and their caregivers understand that certain things may be happening — confusion, depression, irritability, anxiety, agitation, disrupted sleep, and a whole lot of other things that tend to get chalked up to psychological states — may help ease some of the uncertainty and agitation that often complicates the situation, and makes a tough spot even worse.
  • Knowing what you can do about these symptoms can also help. It gives you a greater sense of control and hope. Initially, rest is critical. Being smart about taking it easy and having good medical help is also good. And understanding that rest is not a punishment, but an important part of recovery, can also be helpful.
  • For physicians, it may be a challenge to not have a pharmaceutical solution for concussion/mtbi, but this just highlights the importance of addressing patient mtbi issues — you can’t give them a pill to fix it, you need to rely on their cooperation and compliance to improve outcomes. And that means addressing their brain injury issues in a constructive and supportive way. This may be a departure from how things are done for many, but I really feel it’s worth the effort.

One blog post isn’t likely to change much, I realize, but if one person in medicine reads this and takes a slightly different approach that factors in TBI when treating multi-trauma, so much the better.

Prepping for my neuro visit tomorrow

I’ve got another neuro visit tomorrow — this one is finally a substantial one, when I’ll actually be reviewing the results of my MRI and my EEG. It’s been about a month since I got my MRI, and it’s been nearly 3 weeks since my EEG, and the suspense has been really intense at times.

In my more dramatic moments, part of me thinks, “Today is the last ‘normal’ day/week of my life.” And I get all worked up, thinking that these test results might come back with terrible news or some sign of a horrible condition/disease/tumor/whatever that will sideline me permanently — or at least turn my life into one big detour.

I worry that I won’t be fully functional anymore. That I’ll have to invest all this extra time and energy in overcoming a real issue that I’ve blissfully ignored for a long time. That I’ll be officially disabled. That I’ll be “less than human” and have to live a second-rate life as a result of what the pictures of my brain show.

I also worry that they won’t find anything at all… that I’ll turn out to be crazy and people will look at me like I’m just looking for attention… making things up… malingering… defrauding professional service providers.

Worst of all, I think, would be getting inconclusive results that will waylay my energy and keep me pre-occupied trying to track down the root cause of stuff that’s been getting in my way for a long time, but I’ve been able to brush off and minimize until the past year or so.

I’d almost rather get no results than inconclusive ones. But whatever happens, happens. And I’ll just deal with whatever comes up. I always do.

This waiting around for test results is really exhausting. Especially since I never got any medical attention for any of my multiple TBI’s, and I don’t have a lot of reliable medical records describing my symptoms and issues in medical jargon-y detail. I’ve never been able to articulate my issues to doctors with any level of accuracy, and most of the time, I’ve just given up and said, “Oh, forget it — it’s not that bad, really…” and went off to lick my wounds where I was safe and warm and able to tend to myself and my problems on my own terms.

I swear, this cognitive-challenge/communication-difficulty stuff just makes me nuts. I have a hell of a time articulating my issues out loud to doctors, who are all too often looking for medical data and/or some Latin-based vocabulary in order to properly assess my situation. I don’t know Latin, and I don’t have medical records that show evidence of my injuries. All I have is my life experience and a muddled, garbled mish-mash of out-loud observations that don’t come across right, when I’m talking to someone who doesn’t know me personally (and even if they do, can’t for the life of them imagine that I’ve actually been injured). Absent concrete data, I’m out of luck… so, I’ve been largely resigned over the years to just being out of luck.

Oh, well… what’s next? Life is waiting…

But tomorrow, I will actually be having a discussion with a doctor about real, honest-to-goodness medical test results. Imagine that. I am really looking forward to it. I’m looking forward to it so much that I’ve been studying up on MRI’s and EEG’s and learning to recognize what they show.

I found a couple of great sites for learning about them — with plenty of pictures, which I desperately need.

There’s the section on Electroencephalography and Evoked Potentials followed by their Electroencephalography Atlas over at Medline. I have been studying the page on Normal Awake EEG
so I know what I’m looking at, when the doctor shows me what’s going on with me. I’m studying the normal EEG, as well as other types, so I can tell the difference — if there is any — between what my EEG looks like and what a normal one would look like.

Normal Awake EEG - A 10-second segment showing a well-formed and well-regulated alpha rhythm at 9 Hz.

Normal Awake EEG : A 10-second segment showing a well-formed and well-regulated alpha rhythm at 9 Hz.

I’ve also been studying MRI’s over at Harvard’s Whole Brain Atlas, which shows what a normal MRI looks like — with the different slices — so that when I look at my own MRI, I can see if/how it differs from how it “should” look.

The Whole Brain Atlas

They have MRI slices from different scenarios —

  • Normal Brain
  • Cerebrovascular Disease (stroke or “brain attack”)
  • Neoplastic Disease (brain tumor)
  • Degenerative Disease
  • Inflammatory or Infectious Disease

And you can look at the slices from different angles, which is way cool!

I’ve been studying the normal brain MRI slices, so I am better able to understand what — if anything — is wrong with my gourd.

Now, on a wireless or dialup connection, the images load a little slowly, but on broadband/cable modem, they’re speedy.

Okay, so I know I’m a bit of a nerd/geek, but this just fascinates me. I’m also studying EEG electrode placement patterns, so when I look at my own EEG, if there is any abnormal activity, I can see what area of my brain it takes place in.

Electrodes are placed on 10-20 different areas of the scalp, and they’re lettered/numbered by position. F means Frontal Lobe, T means Temporal Lobe, O means Occipital Lobe, P means Parietal Lobe, and combinations of them mean the electrodes are getting data from more than one lobe. The numbers are odd on the left side of the head and are even on the right side. Here’s an image I’ve been studying:

eeg electrode placement - click to enlarge

I think it’s fascinating. And I have a lot to learn. I think I’ll get myself a balloon and blow it up, then write all the electrode numbers on the balloon with a permanent marker, so I have a 3D version of the placement to take with me to the doctor. I’ll let the air out of the balloon, so I can take it with me easily and then blow it up at the doctor’s office so I can see what’s up, when they start talking about the different readings of my brain.

Of course, this may be moot, if my EEG comes back perfectly normal, but in case it doesn’t, I would like to understand where/how/why things are ‘off’ with me… what it means… and if/how any of my prior TBIs have specifically impacted certain parts of my brain.

This stuff just fascinates me. It’s a lot to take in, and it can actually be pretty serious, but for now I’m going to entertain myself… not to mention distract myself from all the different scenarios my broken brain is coming up with.

Sometimes the inside of my head is a scary place to be.