The roots of our brain injury recovery

What's beneath can be much more compelling than what's visible
What’s beneath can be much more compelling than what’s visible

Whether you’re concussed, had a stroke, were involved in a motor vehicle accident, or something in your brain ruptured… that injury has literally turned you into a different person.

Read more here — where I discuss the various aspects of understanding the nature of TBI and recovery on  my TBI research blog at https://tbiresearchriffs.wordpress.com/2016/02/16/the-roots-of-our-brain-injury-recovery/

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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.

11 thoughts on “The roots of our brain injury recovery”

  1. Hmm. I think that the needs of people with brain injuries of vary greatly. The athlete (and the coach and the parents) needs to understand that they must take a break. The GP doc needs to recognize that the symptoms of a brain injury and ‘prescribe’ rest – and then revisit the person in time. But how much rest is still unknown. Current research says that people who re-engage sooner than later in activities and in using cognitive functions recover better. But individual personality also matters – the person who is more driven and goal oriented does better than the person who has never had any interest in intellectual pursuits. Age matters, and yes, psychological history matters. There is also an ‘x’ factor – which is hard to determine – why some folks who want to improve and work hard at it still struggle, despite seemingly minor injuries (and no litigation involved).
    Maybe I have less faith in the value of the medical community that you. I don’t believe that expensive SPECT scans and fMRI’s are needed for every blow to the head. I believe that we need better rehabilitation programs, better vocational programs, better supports, better insurance coverage and more understanding from the world at large – especially the workplace – that will allow high functioning people with brain injuries the opportunity to work and be self-sustaining. I think that would go a looooonnngggg way to improving things. Current rehab practices do not address issues such as self-assessment – most folks have no clue what accommodations they need (and this will change over time) in the workplace, most have no insight into what the deeper level challenges are (e.g. people say they have memory issues when the bigger is that they have focus problems that make it hard for them to recall information).
    I do think that psychology would benefit from more training – but then its always a challenge for find an effective and useful psychologist even without brain injury. There are tools – real methods – that can help a person with a brain injury learn to self-assess, avoid serious depression and address some of their challenges.
    The brain works as a whole and each person is unique – personal abilities and circumstance play a big role in outcomes. Current systems make it harder for a person. I don’t believe however that we are anywhere near understanding enough to know who will have long term consequences or why or even the ‘fix’ – this is a very individualized process which is why it is so hard to implement changes or even collect meaningful data. We don’t even have a clue how many people have permanent deficits as the result of a tbi but who manage – with difficulty – to get by. We have no extensive data, no longitudinal data. The focus is on ‘what happens’ in the brain to seek a preventative but not on the adaptation component. The Autistic community went through this too – at first it was blame bad mothering, then vaccines, then seeing it as disease. It too is a spectrum with some folks doing very well and others struggling greatly. But there is more and more a recognition that adaption is a critical area that needs to be taught so that a person can be all that they are.

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  2. It’s true – the science is incredibly old. Unfortunately, that’s where a lot of the thinking originated — thinking that we need to address (and debunk where possible). It’s a necessary evil, to look back — and it’s a messy job, but somebody’s got to do it.

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  3. Yes, a lot of unknowns. And older papers are unreliable. Unfortunately, there are plenty of current studies which purport to know why PCS happens, and why some people don’t recover as soon as others. Apparently, emotional and unresolved psychological issues are to blame. I see it over and over, especially in discussions about the “miserable minority” of PCS sufferers.

    As for doctors, the reason I even give them a passing thought is that they are the de facto experts in this, whom the public turn to for assistance. All I ask is that some semblance of responsibility be assumed in fulfilling that role. If we don’t hold people accountable, who will? The medical establishment seems pretty focused on circling its wagons and protecting its poor performers in many ways. That’s not helping. And it’s doing a lot of harm.

    There is also some really great research available from Giza and Hovda about the neurometabolic cascade. It explains so much. And there is more research going on with DTI and other imaging which actually gives us something tangible to work with.

    As for disablement after TBI — with regard to PCS, we’ve got evidence that providing educational content and support early on correlates with faster recovery. While there’s also evidence that the brain needs 7-10 days for the “excitement” to calm down. Again, Chris Giza is doing some great work in that — http://www.statnews.com/2016/01/15/concussion-biomarker/ — check out the spiffy animation at the top – very cool. Also, there’s more and more research about actual measurable changes to the brain, which again fills in the gaps of disbelief and “it’s all in your head” ideology.

    I absolutely agree that we need to focus on adaptation and rehab. The thing is, we need to understand the nature of the injury, as well as believe in the ability of the brain to heal. It’s not about blame or pathologizing things. It’s about objective understandings of the situation so practical steps can be taken. Because there are things we can do to address this very real problem.

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  4. I haven’t seen any recent papers about PCS being due to unresolved psychological issues – can you point to one?
    I did do a quick look-see on psychological issues and PCS – but I don’t give it much credence. However I do think it’s fair to say that brain injury with lasting symptoms is highly correlated with psychological issues. Those issues are often the result of three things; pre-morbid psychological issues, the physiological injury itself, and the post injury adjustment process which is often made worse by the lack of tools, education, awareness and supports. Pre-morbid psychological issues does not discount the impact of a brain injury – some studies say that if you followed the DSM-IV that 98% of the population would have some sort of psychological disorder.
    I have not seen any definitive understanding of PCS – there is some knowledge of neuro-anatomical and bio-chemical response relative to cascade. I don’t think it’s a bad idea to study these causes but they are being studied exclusive to any effort towards helping those living with brain injury rebuild quality of life. Building a better helmet may be significant for the NFL but it has little value for those living with a brain injury.
    I guess I just don’t see docs having much of a role after you get a diagnosis. The various issues that are associated with BI can be associated with so many other things – and there really is no such thing as a brain injury doc. A neurologist doesn’t really have any vested interest in brain injury – there is nothing they can do for the person unless there are seizures or migraines or some such thing. I am not sure how one can hold them accountable? To what? There are lots of medical conditions that remain outside the classic treatment models – chronic fatigue, fibromyalgia, chronic pain. .Maybe it’s the model of care that is problematic. If you have a severe injury you go to hospital and then rehab and then outpatient. If you have moderate – or even mild – injury you MAY go to outpatient rehab. But if you have a mild injury and don’t recognize it as such you don’t go to any program – and consequently get misled and confused about the root cause of your problems. At best a GP can add brain injury to their list of possible causes and refer a person to an outpatient rehab.
    I think Giza’s work is interesting but again to me it doesn’t address the here and now of people who are left in chaos with no funding, no programs, no support, no employment, no access to anything. I think that the active use of biomarkers is still a ways off as a diagnostic tool. I agree that the It’s all in your head stuff is problematic – but I also think there’s something to this in a strange way. It’s not about blame but it is about the way many rehab programs work – the term ‘survivor’, the emphasis on what a person has ‘lost’, the encouragement to feel helpless rather than empowered to make change. I see a lot of folks who don’t even try to improve anymore, or who think improvement is a magical even that happens. To rebuild is work, hard work and not always fun. But there is no system for that.
    The nature of the injury will be a long time coming. Medical science isn’t as sophisticated as we would like to believe. In the meantime there are things that can be done – but there is no money to doing them – instead people are dismissed.

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  5. Let me dig up my list of papers about pcs = psych in origin. Giza’s and others’ work to me is most valuanke as substantiation that TBI is an actual physiological issue that can be treated as such. And it might just open up funding for tangible help. Might…

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  6. Here’s a selection. I’m adding more listings in another post –

    A review of post-concussion syndrome and psychological factors associated with concussion
    http://www.tandfonline.com/doi/pdf/10.3109/02699052.2014.974674 – best of all, it’s free (and is recent, from 2014)
    Conclusions: Understanding, assessing and treating the psychological factors associated with concussion are effective means of preventing or shortening the length of post-concussion syndrome.

    The “Miserable Minority” following mild traumatic brain injury: who are they and do meta-analyses hide them? (2012)
    http://www.ncbi.nlm.nih.gov/pubmed/22256957

    Understanding the ‘miserable minority’: a diasthesis-stress paradigm for post-concussional syndrome. (2004)
    http://www.ncbi.nlm.nih.gov/pubmed/15545210 (not free, but there are ways around that)

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  7. whoops – sorry didn’t see this before I replied to the new posting.

    THe first one A review of post-concussion syndrome and psychological factors associated with concussion – reading only the abstract it seems valid. Psychological impacts from BI are clearly associated for any number of reasons, and if a person is anxious or a high performer who is very self critical etc then an mtbi is likely to be experienced as a huge loss.

    The second one – he “Miserable Minority” following mild traumatic brain injury: who are they and do meta-analyses hide them? is a little trickier – again reading the abstract. Some degree of psychopathology may exist for a lot of persons but not be significant enough keep them from functional life style – but if you add an injury to that they tend to falter, they may have little drive to achieve, or may be more passive, or they may not like cognitive effort (which is hard work). These individuals do in fact have a brain injury but their pre-morbid issues now interfere with their recovery. On the other hand establishing impairment is not so easy. A person who had an IQ of 140 is considered pretty bright and capable, Drop that 20% – and they are down to 112 – and that difference can be felt in terms of working memory, speed of processing, or attentional deficits which may only be apparent in real world scenarios. So from a testing standpoint they are not impaired, but from the view of the way they are wired to work they are very impaired.

    THe third one is from 2004 – and already somewhat dated (it was around 2006 when they started giving more credence to mtbi in my view) – but also it’s an old story. There is a grain of validity but its how you interpret that – in that rehab programs DO often foster helplessness and self-perception of being damaged, less than, etc. Docs talk down to patients and patients perspectives are not considered (doc knows best) . I do see some folks who have no tools (or who have had no help) who get very mired down in helplessness. In general society is not supportive and so this is easy to do.

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  8. Yes, the iatrogenic harm that happens from doctors is probably the most devastating aspect of it all, both in terms of being passed off as well as being indulged and medically coddled. Plus, the psych approach of turning what’s essentially a physiological issue into a “who hurt you when you were little” issue is another form of iatrogenic harm.

    The main problem I have with the discussion, is the identification of post-concussion problems as “complaints” — a subjective report — rather than measurable issues, which can be objectively registered and quantified, if you know what to look for.

    It’s all evolving. And yes, sure, the field is growing. The thing is, current papers reference the Ruff paper (and keep using the term “miserable minority”. The paper is chock full of missed clues about the actual nature of the case studies’ issues — and chalks them all up to “unmet needs” and “borderline personality” traits and more. So, as much as we’d like to dismiss the uninformed past (I know I would), it does play a role in shaping our present and our future. And it needs to be addressed — expanded upon — further explained.

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