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.

The benefits of ignoring bad advice – part 2

I ran out of steam the other night before I could really go into the benefits of ignoring bad advice – medical and otherwise. But that’s good. I’m paying attention to my energy levels, and I went to bed earlier last night than I have done in months. I’m still tired, but at least I got some rest.

Anyway, when I think about bad advice, I’m probably a poster child for ignoring it. Not – mind you – because I just don’t feel like doing what others tell me to, but because I usually do exactly as others tell me, and then I find out all too quickly that they’re full of sh*t and I have to change my direction… or else. I’m willing to try just about anything, especially when it’s suggested by a qualified professional. I guess it’s just my luck that the things they suggest are often the worst possible things I could do – and I have to find out the hard way that they’re completely wrong in my case.

Take, for example, the years I spent in excruciating, crippling pain, about 20 years ago. I suddenly started having terrible pain in my joints. It truly sucked. I also had a small patch of rough skin on my face that got dark. I went to a doctor, and they told me they needed to do some tests. So, they did their tests, and they came back with a diagnosis that was a very serious, relatively unknown ailment that people didn’t know much about at the time. They told me that was the reason for the rash and the pain, and I should see another specialist to help me figure out this serious situation.

Long story short, I spent the next several years not only in excruciating pain, but also living a life that was just a shadow of what I could have been living. I went to plenty of specialists and followed their advice, was compliant with their orders… and my condition just got worse and worse and worse. Until finally I did something that was not in keeping with their instructions – I went outside and got some exercise. And I stretched. And the next day I felt remarkably better. I continued to get exercise, changed the shoes I was wearing from hard soles to soft, and I stretched. I also quit smoking and started eating better. And wonder of wonders, the pain abated.

I can’t say it’s gone away entirely, and some days it’s back with a vengeance, but I’m not living in constant debilitating pain, day in and day out, anymore.

And I seriously question if their diagnosis was correct to begin with.

Now I realize that there are some situations where you should definitely NOT disobey your doctor’s orders. But if you’ve followed their instructions and things just aren’t getting better, you owe it to yourself to try something different.

Likewise with work (or, should I say, over-work?) My current job, I see now — after a frenetic year — is a setup for overwork. The two people I report to are on opposite ends of the spectrum, and their boss is out in a completely different spectrum, period. They either want EVERYTHING DONE RIGHT NOW, or they just don’t care if/when things get done. If I follow either of their leads, I’m toast. Seriously. Even though one reports to the other, they don’t seem to have any interest in behaving as though there is a chain of command. It’s odd. Why would they complicate things like that? Chains of command make some things — like getting work done — so much easier. I guess it’s a case of the person in charge not wanting to be the heavy… or maybe the subordinate person threatened to quit, and they know where bodies are buried, so they have to be placated. Or maybe everyone is just weak? Who knows. Probably the latter. Ocam’s razor strikes again.

Anyway, enough about them. I just have to follow my own lead, do what I feel is best, and trust that I know myself and my habits well enough to manage them properly. Of course, there’s always the chance of my “issues” showing up and getting in the way, but that’s nothing new. I just need to be aware of that and manage it.

But whatever I choose, in all things, I need to take care of myself. Make sure I get sufficient rest and exercise. Eat right. Don’t bombard my body with sugar and cheap carbs, and make sure I get away from the work, on a regular basis. Step outside. Get some fresh air. Stretch the gunk out of my bones and muscles. Do what makes me feel good and strong and keeps me going.

Just keep going. Take care of myself. Be smart. Keep going. So long as I do that, I have nothing to lose.

Wish List Item #1: Consistent quality information about TBI

m had some extensive comments to one of my earlier posts — good stuff that bears repeating:

…. Over the past few years I have seen the quality and availability of information increase exponentially. As I mentioned brainline.org is a great resource. ABIN-Pa and BI-IFEA are two other grassroots organizations – one a local chapter that is very active and the other a web based group with many subset topics with extensive memberships and resource links. And the DCOE has tons of information, including many daily information bulletins and news updates on research, and studies.

I had heard about the BI-IFEA from Kathe Perez, but since it’s a LinkedIn group, which is part of a professional networking site, I’m reluctant to even go close to it. I’m on LinkedIn, but there is no way on earth I am going to reveal to the larger professional community that I’m a multiple TBI survivor. In these economic times, I’m not taking chances with people’s tolerance and enlightenment levels. It’s just too risky. It’s a shame I can’t get to their resource lists. I’ll have to check out the DCOE site. At first glance, it looks quite good.

The Brain Injury Association of America has a very deep site and many individual states have great BIA sites with lots of material, presentations, white papers, events, video clips etc as well as links to site specific topics – Wisconsin, NJ, New York, Pennsylvania, California, Kansas are just a few of the state groups that have extensive websites. I am also involved with a project to create a single point of access/repository for all materials produced or available through these individual brain injury organizations creating a consolidated library of information for free public use.

Thank heaven for that! You go… I’ve been thinking about how much we need something like that — a clearinghouse of all the collected information from the different BIA chapters. Having it segmented out from state to state is tremendously frustrating. From where I’m sitting, there should be a central BIA database from which all the chapters pull – not individual respositories. Have a decent data warehouse — at the very least, a DB with meta data which indexes all the collected information and links to it, for common access — and break out the individual state-specific info based on a field in the DB. Please, please, please enlist the help of a competent data architect to design the DB  — I’m assuming, perhaps erroneously, that you’re not such a person. Having a properly designed and normalized database for this can make everyone’s life a whole lot easier. I’m happy to help with the DB design (I’ve done a bit of it, myself, in my day — for large-scale enterprises with millions of customers — scale, baby, scale) so let me know if I can contribute somehow. Hmmm… now you’ve got me thinking… I’ll have to capture what’s coming to mind.

Individual hospitals that are part of the Models of Care System produce a large number of research reports and papers – available through their individual sites, the BI Models of Care site and through the COMBI site. The Dana Foundation has a lot of brain research information. And then there are special sites like Give Back Orlando etc.

And here’s yet another one of my frustrations — there’s all this great information out there, but it’s not generally available to people, unless they know what to look/ask for… or they connect with another person who has that specific knowledge about the sites. Ugh – it’s just so frustrating. Will a returning vet understand how/where to look — or their spouse? Or their significant others/family/friends, etc? And if they do find their way to the info, will they be able to get to it, to navigate it? It’s the eternal issue with the online world — figuring out what info is where, and how to use it. As much as everyone likes to come up with their own site design, it would be nice if folks could agree on a best-practices information architecture, especially with regard to TBI information. And then we have the issue of the content itself — is it scholarly, academic, accessible to everyone, written for the general population… what? Even if you are fortunate enough to find something, can you actually use it?

Is the information quality? I’d say for the most part yes, it comes from studies and current research and people in the field. Some sources are more open to ‘outside the box’ stuff such as HBOT, TCM, neurofeedback, meditation, yoga, etc etc. And some are more conservative in their approach. Generally special interests groups are NOT involved – such as the pharm industry – but of course any given research group has bias and their own perspective. It doesn’t invalidate their data but it may make it more applicable to an individual demographic or subset. How much does commercial money influence people? As much as it does with heart medicine, diabetes, etc etc. – that is to say that they give more money for certain kinds of research. But the range of studies is promising and if the results yield something positive, the money will likely follow.

Yes, quality information is key. But again, can people use it? I think there should be some sort of hierarchy established, some sort of ontology of sorts, around the type of information that’s out there.

As for ‘outside the box’ therapies, if they work and they aren’t dangerous, I think they can be an important part of recovery. Some of the more fringe treatments worry me, and I tend to be concerned about extremes of scientific/medical rigor — folks that are totally into it, can let it keep valuable treatments from the population, while folks who want to just get treatments into the hands of the needy may bypass the “quality assurance” stage. Conundrum! I think there needs to be a middle-ground somewhere.

Regarding commercial interests, I was thinking more along the lines of rehabs plugging their own flavor of TBI rehabilitation, to attract new patients. Or doctors who are proposing radical new treatments which may or may not work — I’m thinking here of  Dr. Daniel Amen and his SPECT-scan-based approach. Maybe it works, maybe it doesn’t, but “It requires the injection of a radioactive material,” which I do not find particularly appealing. I had an MRI and they gave me a contrast agent which made me ill (and I’ve read it may have a bad effect on my kidneys). However, someone who is desperate for help, might go down that route — “Shoot me up, baby! I’m suffering, and nobody gives a damn!”.

This is just one example I can think of, off-hand. Given that CAM or non-traditional healing is generally not covered by insurance, and people are prepared to pay for it anyway, it opens the door to even more questionable stuff, which people may feel is worth the risk and the expense, because they cannot get any sort of help or information anywhere else.

Personally, from what I’ve observed among friends and acquaintances, people are willing to put up with all sorts of “treatments” from alternative “healers” in no small part because the “healers” are so willing to share information, and they genuinely care for the people they’re working with. One example I can think of, was an “aesthetician” I once met (read manicurist and pedicurist and beauty salon owner) who wanted to do more for her clients, so she went to some workshops and took some classes, and started representing herself as a “cranial sacral practitioner” — just because she did laying on of hands on people’s heads and lower backs. True story. And scary.  Care is so very important — but it needs to be accompanied by intelligence, competence, integrity, and quality control.

Having good information available to people who need it in a way that’s accessible is an important first step.

Dangerously dizzy… but life won’t wait

I’ve been increasingly dizzy, the past few days. My left ear is squishy and has been making its presence felt. Pressure in my head, and fatigue… I haven’t had good sleep hygiene, for the past few weeks, and it’s catching up with me.

It’s a scary thing, because it’s so disruptive for my daily life. I have things to do and stuff to accomplish, but if I stand up too quickly or move too suddenly, the whole world starts to rush and spin and I get very sick on my stomach. It also makes me extremely irritable, so I snap out at every little thing, which makes me very difficult to deal with at times.

The only thing that really saves me, is being totally focused on what I’m doing, and not moving much while I’m doing it. Working at the computer is a perfect solution for me, because I have to sit up straight and stay focused on the screen in front of me.

The only problem is, it’s Saturday… a few days before I take off on my marathon trip to see family… and I have a whole lot to get done. Dizziness puts me in more danger of falling or having an accident. If I’m not careful, I can get in a lot of trouble. The last thing I need this holiday season is another concussion — most of my adulthood injuries have coincided with holidays, when I was running around like a chicken with my head cut off and wasn’t paying proper attention. I was fatigued and disoriented… and I fell or had a car accident. Not good.

Yes,  I need to be very, very careful, in everything I do.

I think a big part of the problem I’m having right now is the impending holiday rush. The prospect of driving through several states to see multiple families, over the course of nearly a week is making me a little nervous, and that’s setting off my schedule and my focus.

I have been doing really well with keeping to my daily exercise, which helps.  I just finished my morning workout, in fact, and I feel noticeably better than I did before it. I worked up a sweat and got my heart pumping, which in turn moved the lymph through my system to clear out the grunge. I love lymph. So basic, so essential, so useful. Without it, I’d be in a heap of trouble, and I count my blessings that I don’t have lymph drainag problems, like folks with edema do.

Anyway, I’m feeling better, and I have a full day ahead of me. But I’m pacing myself. And I’ve blocked off time this afternoon to sleep. I haven’t had a good afternoon nap in weeks, and it’s taking its toll. If I don’t nap at least once over the weekend, it catches up with me — and that’s what’s been happening.

And now I’m really dizzy, with a lot of stuff to do, and I regret doing chores last Sunday, instead of taking my nap. I had three solid hours to myself, to use as I pleased, and I frittered away the time on futzing around and doing little chores that took longer than I expected.

Ah, well,  so it goes. At least I’m aware of my dizziness, so I can accommodate it and work with it. When I’m really, really dizzy, I find that keeping my posture ramrod straight and moving very slowly and deliberately helps tremendously. Also, if I sleep a lot and drink plenty of fluids and avoid sugar, that helps, too. I’ve taken medicine for vertigo, but it didn’t help a bit. Anyway, it turns out the medicine is really just for nausea that results from vertigo, not the vertigo itself — at least that’s what the PCP I had at the time told me. Come to think of it, they could have been wrong. They were a bit of an idiot, by average standards. (And it was a scary six months in my life, when they were my primary doctor.)

But now I’ve got a pretty good PCP, and I trust them a whole lot more than the last several I went to. Trusting your doctor is good. It simplifies a lot of things, in many ways, not least of which is the office visit experience.

But more on that later. Right now, I need to stay focused on my dizziness.

Tracking back over the past week, as it’s gotten steadily worse, I have been looking for what I’ve been doing differently that has contributed to this. The one thing that I’ve been doing regularly, that is very different from before, is that I’ve been eating pieces of chocolate to keep myself going. Not just chocolate, mind you, but those little Dove chocolates with peanut butter in the middle. I thought that the peanut butter would give them more staying power, but what I’ve noticed over the past week is how much sugar is in those little puppies.

Zoinks! Who eats this stuff regularly?! They’re dangerous! Sure, they give me a little pick-me-up when I need it — like driving home late from work when it’s very dark, I’m very tired, and I’m having a hard time seeing. But I’m finding that when I eat one, I crave another one about 10 minutes later — like I spike, and then I crash and am worse off than before, so I need another “little” piece of candy to keep me going… and my system gets totally fried by all the sudden, extreme ups and downs.

Which contributes to my fatigue… and apparently my dizziness.

Not good.

So, while I’m doing my errands today, I’m going to remove the chocolates from my car — just throw them out — drink more water, eat more fruit, and be very, very careful when I’m out and about.

The last thing I need is another accident or fall.

Oh, look – there’s hope after all…

Great info over at The Rogue Tomato about The Bravewell Collaborative and their recent Summit on Integrative Medicine.

I’m just now finding this, myself, so I don’t have a lot to say about it. But it looks quite promising — especially since the Summit involved some very established physicians from some very established institutions.

If they’re paying attention to this, then my day just started looking a little brighter.

Which just goes to show, it’s never a good idea for me to completely lose hope. I don’t know nearly enough to despair responsibly 😉