It’s not just women who suffer from isolation after #concussion #TBI

lonely-umbrellaI knew there was a risk of leaning too heavily towards a gendered approach to concussion and TBI treatment with my last piece. It’s very tempting to narrow the focus to one specific group or case, when you’ve got a set of research looking into that. And it’s tempting to focus on subgroups who have been traditionally overlooked.

I do think there’s a lot to be learned from considering special characteristics of people, but that can leave out the needs and circumstances of those who are on the margins of the margins… or those who “don’t belong” in the subgroup, but don’t quite fit in the mainstream.

And so the pendulum swings from one side to the other… Women are marginalized… Let’s put women in the spotlight… And then comes the very human response of folks who feel left out because, well, they are left out, but they also need attention. So, the discussion may end up “pinballing” from one special case and group to another, until everyone feels simultaneously noticed and disregarded.

Funny how that goes.

The thing is — and this is especially true of brain injury — there’s no one silver bullet that’s going to fix it all. Everyone is different, everyone’s experience is different. What works for one, might not work for anyone else. But that way of exception-stymied thinking can stand in our way. I think that’s actually hindered the development of treatment innovations, because the perceived differences and variations between those millions of survivors seem to preclude a consistent, systematized approach to treatment and recovery.

But there is one thing we all have in common after TBI. Brain injury is an assault on your person, as well as your place in society and your community. So, when it happens to you, it happens to everyone. And the folks who are sequestered to heal from their mild TBIs, due to doctors’ orders, drop out of a social circle that depends on their participation to be complete. Unless you live as an island with no social contact at all, that experience is going to be shared with millions of other concussees and TBI survivors.

When a social circle loses a piece of itself, it’s traumatic by its very nature, because the integrity of the group has been compromised. Losing a connection that gave all the members a coherent and durable sense of who they are, represents a loss to all of the members — a group of friends, a clique, a team at work, a sports team, etc. The loss doesn’t just affect the injured party — the whole social circle and all its members have been impacted as well.

When a concussee is a member of a tight-knit team, the sequestration after mild TBI will absolutely contribute to their level of stress. They’ve lost the connections that tell them who they are, that remind them of their identity, which bond them with others who help them through the hard times. You can never, ever overestimate the importance of the team, when it comes to the spirits of everyone who’s a part of it. And you can never, ever underestimate the negative impact of losing that sense of belonging… that sense of self… that happens when you’re suddenly pulled from the center of the group.

So, while their tend-and-befriend impulse may predispose them to affiliating more in times of stress, women aren’t the only ones who take a hit when they lose their connections with others. (And let’s not forget that not all women are equally inclined to bond with others for reassurance and nurturance.) Anyone who relies on the support of a group, who is cut off from that connection, is going to struggle in sequestration.

What does this mean? What does it imply? I’m suggesting that we reconsider the way we respond to concussion / mild TBI in the acute phase (within the first 7-10 days when the brain is righting its impaired metabolism), perhaps exploring ways to actually increase the sense of connectedness and support, rather than limiting it.

One possibility (this occurred to me last night, as I was drifting off to sleep), is the use of therapy dogs (or cats) post-concussion. Therapy animals have been shown to reduce stress and provide companionship to folks who for whatever reason aren’t integrated into the larger community. And service dogs are becoming common with folks after TBI, especially veterans.

For those who can’t take on the care and feeding of an animal full-time — and who may not actually need a service dog — I could see how daily visits from a therapy dog could help reduce the stress and foster a sense of connectedness. I know it’s being done for folks with moderate and severe brain injury, but I think it’s just as valuable for folks with “just” a concussion of “mild” TBI. Especially in those days and weeks immediately after, when everything is so confusing and uncertain…

Animals can offer a special connection that has nothing to do with computers or devices or texting or television or any of the other modern (and medically proscribed) ways we connect with each other. You don’t have to work at a relationship with a therapy animal. But you can interact, get some lovin’, and have the contact you crave with “someone” who isn’t going to judge you or criticize you or make you work at interacting with them.

Another option might be educating members of the social circle about concussion, and fostering regular (limited) contact with real people, in real life. This is going to be more logistically difficult, because everyone is so busy, and with work / game schedules, it can be tough to carve out time. But just having some contact with your social circle is better than nothing at all. One of the big barriers to that happening, is fear and uncertainty and insecurity about brain injury in the wider population. It’s a tough nut to crack, but having some info and guidelines in place might help.

Those are two ideas for maintaining “low-impact” contact with the outside world immediately after concussion. I’m sure there are many more viable options. It’s all an evolving process, and more ideas will emerge over time. There’s lots of opportunity — it’s just a matter of what we’ll do with it.

I certainly hope we do. Because clearly, women aren’t the only ones who suffer after mild TBI and concussion. They may suffer in more specific ways, and the things we do to help may make things worse, but the same could be said for many others.

We’re literally all in this together.

Women and #concussion #TBI – do current treatments make things worse?

work-against-womenSomething absolutely critical occurred to me today, as I was scanning the tracking data for a technical website I optimize. Pardon me, if I’m behind the times on this — it just occurred to me, but after some admittedly cursory Googling of terms, I found no evidence that anyone else had made or published about the connection I’m about to discuss.

The Burning Question That Needs To Be Answered:

Do the ways we currently treat concussion / TBI actually work against the women who have been injured?

I’ve been influenced, of late, by a good deal of conversation about women and concussion, including my reading about the “miserable minority” of mild TBI survivors (mostly women) whose symptoms persist past the 3 months they’re expected to last. After decades, we still have double-digit percentages of PCS sufferers who continue to deal with sometimes debilitating symptoms. There is some compelling dialogue going on, and it’s been quite eye-opening.

I’ve also been amazed that only recently have people started studying the differences between male and female concussions. Implausible, but true. It seems logical, that there would be a difference in both the mechanisms and the experiences, yet the discrepancies are just now beginning to be explored. It’s a good change, but I’m surprised it’s this recent.

And after giving this a whole lot of thought for some time, I now have to wonder if we aren’t missing something. Could it be that concussions are worse for women, not only because of their reported heightened susceptibility (this may turn out to be untrue, eventually), not only because they’re “more likely to seek medical care”, but also because of the way concussions are treated?

Gender differences aren’t just about physique and conditioning. They’re also about how men and women respond to the world around them, especially stressors. Some years back, around 2000 or so, my psychotherapist friends were excited to share a new theory that was emerging about how women respond to stress. It’s the “tend and befriend” theory, developed by Shelley E. Taylor, Ph.D. (and others) of UCLA. Dr. Taylor’s publications and news stories about theory can easily be found in a simple Google search for “tend and befriend”.

Essentially, the theory states that:

… human beings affiliate in response to stress.  Under conditions of threat, they tend to offspring to ensure their survival and affiliate with others for joint protection and comfort.  These responses are underpinned by an affiliative neurocircuitry that appears to be based on oxytocin and endogenous opioid peptides.  When close relationships are threatened or one is socially isolated, a rise in plasma oxytocin occurs, a biological marker that may signal a need for affiliation: Oxytocin prompts affiliative behavior in response to stress, in conjunction with the opioid system.  Together with positive social contacts, oxytocin attenuates biological stress responses that would otherwise arise in response to social threats.  These social responses to stress and their biological underpinnings appear to be more characteristic of women than men.

[bold emphasis is mine]

So, under circumstances of stress, women tend to bond more than men. They pull together, forming connections in the face of threat, while men more often resort to fight-flight. Obviously, there will be exceptions, but that’s the gist of it.

Concussion / mild TBI can be a deeply distressing and stressful experience. Especially where no information is given, and no explanations for symptoms are offered, you can end up feeling completely alone. With women, the common impulse might be to reach out and affiliate with others, for support and nurturance and protection.

The only problem is, that’s not how concussion is treated.

If anything, current protocols for concussion treatment involve isolation and strongly curtailed interactivity and stimulation.  According to the Mayo Clinic website:

Rest is the most appropriate way to allow your brain to recover from a concussion. Your doctor will recommend that you physically and mentally rest to recover from a concussion.

This means avoiding general physical exertion, including sports or any vigorous activities, until you have no symptoms.

This rest also includes limiting activities that require thinking and mental concentration, such as playing video games, watching TV, schoolwork, reading, texting or using a computer.

Your doctor may recommend that you have shortened school day or workdays, take breaks during the day, or have reduced school workloads or work assignments as you recover from a concussion.

As your symptoms improve, you may gradually add more activities that involve thinking, such as doing more schoolwork or work assignments, or increasing your time spent at school or work.

Physical and mental rest is a solitary activity. Limiting activities such as texting and computer activity, nowadays, essentially cuts you off from your social circle. Shortened school and work days keeps you out of your customary circle of support.

To me, that means women and girls who are concussed and given the same recovery guidelines as men and boys may actually suffer more short-term stress from concussion than males — specifically as a result of the recommended treatment. Cut off from their affiliations and support networks, women are literally unable to obtain the positive social contacts which produce the oxytocin that attenuates biological stress responses.

According to Taylor (and many others), “men may be somewhat more likely to cope with stress via fight or flight“. So one might reasonably expect the impact of isolation after mild traumatic brain injury to be less disruptive to men’s recovery process. However, for females, it’s a very different story, because their primary means for coping with stress (connecting with others in ways that reduce the biological stress response) has been medically prohibited.

What’s more, since stress is known to increase post-concussion symptoms, it seems likely to me that prescribed isolation and contact deprivation might actually be a contributing factor in the duration and severity of concussion symptoms in females vs. males.

Again, males have been seen to use fight-flight response, so isolation may tie in with that flight impulse and soften the impact of their downtime. Because the deprivation treatment model works for male concussees — and the majority of folks with mild TBI — it’s judged a relative success, with PCS cases being an unfortunate exception. And the unconscious assumptions that “what’s good for the gander is good for the goose” essentially camouflages the inherent shortcomings of concussion treatment protocols for females.

Obviously, more needs to be done to connect the dots and substantiate this unequivocally. I’m sure there are other aspects to this, of which I’m not aware. And it would be helpful if domain experts could weigh in on this.

Who knows? Maybe at the Pink Concussions Summit on Feb 27, this will be addressed. The bottom line is, there are connections to be made that can shed more light on this subject, and the more we keep looking, keep inquiring, keep collaborating, the better chance we have of finding resolutions and approaches that can make life a lot better for a whole lot of people.

Research papers on post-concussion syndrome (PCS) and psychological factors

Happy reading!
Happy reading!

On PubMed I found over 500 papers for a search on “PCS and a history of psychiatric disorders”. You can see the full listing here – click to see the list

Check out Google Scholar’s listing, to see what’s been published regarding post-concussion syndrome and having a history of psychiatric disorder – https://scholar.google.com/scholar?q=post-click to see the list

Happy reading.

What’s in a word? Finding out how we talk about #TBI and #concussion

Here are the vast majority of the unique terms in Ruff et al.'s 1996 "Miserable Minority" paper
Here are the vast majority of the unique terms in Ruff et al.’s 1996 “Miserable Minority” paper

I’ve been doing a lot of reading, lately, about the “Miserable Minority” – the roughly 10-15% of the concussed population who do not recover fully within 3 months of their injury.

I managed to get hold of a copy of the paper, and I’ve spent days reading and re-reading it, marking it up with my notes, and wondering about how to think about this.

Since I work with data on a daily basis, I decided to get some metrics around the words that are used in the “Miserable Minority” article. I copied all the text out of the paper, stripped out the citations, removed the headers and footers, then the text through a program I developed to grab the numbers of unique terms in the text.

I removed the “stopwords” — common words like “a”, “the”, “and”, etc — and I took out the numbers. Here are the top 20 most frequently used words in the paper:

Rank Word Frequency
1 her 123
2 in 114
3 she 88
4 with 71
5 was 60
6 for 49
7 had 46
8 mtbi 45
9 on 38
10 this 37
11 he 37
12 not 33
13 or 30
14 from 28
15 have 28
16 were 27
17 his 26
18 emotional 24
19 but 23
20 can 23

So, you can see there’s a pretty strong focus on the female aspect of it. And of course, there’s the emotional part, too.

All in all, there are over 1,800 unique terms used in the paper, which surprised me a little bit. I kind of expected some clear “winners” to come out, but the authors cover a lot of ground. But if you look at the larger picture (click the wordcloud image above – it will open in its own window) there is a strong emphasis on emotional symptoms and premorbid conditions.

That’s not surprising, since the paper pretty much boils down to the idea that while mild TBI / concussion is a widespread and problematic injury throughout the population, the brain injury itself is not to blame for symptoms that last more than 3 months. According to the paper, concussion issues should clear up within 12 weeks or so, and if they don’t, there’s something else going on — something pre-existing, like a rough childhood or a history of abuse.

According to the authors, mild TBI may trigger unresolved issues — or re-ignite formerly settled issues — thus causing the patient to mistake them for brain-injury-related issues. They admit that imaging is not yet sensitive enough to pick up microscopic damage. However, that was 1996. This is now. And 20 years later, we know from research that concussion does indeed cause structural changes to the brain. The damage is subtle. But it’s real. And repeat concussions result in cumulative damage which can produce significant deficits on down the line — whether due to yet another TBI (like the one I had in 2004), or organic changes that come with age.

This whole idea that enduring TBI symptoms are emotional and psychological in nature needs to be revisited. We simply know better now. And to persist in that old ideology serves neither the patient nor the provider, who may be struggling to understand why the patient is responding the way they are (or aren’t).

We know that concussion alters the brain. We know that the biochemical cascade that’s unleashed in the cells of an injured brain can have lasting consequences over time. We know that even a blow to the body can cause concussion, without the head ever being impacted. We know so much more about the mechanics of the process, than we did 20 years ago. So, why would psychologists and neuropsychologists persist in relying on outdated assumptions based on obsolete data?

They shouldn’t. They should change their “tack” with regard to assessing and treating mild traumatic brain injury in the PCS population. And that’s true for men, as well as women.

Perhaps most importantly, they need to change how they talk about PCS — and stop labeling us similar to malingerers and attention-seekers. Stop with that foolishness, already. Get your facts straight, and quit calling us names. If you can’t seem to help us, don’t assume it’s us — maybe you just aren’t taking the right approach, and you need more (and better) information.

While Googling “miserable minority”, I found a sign of positive progress. Result #3 at the top of the page is a December, 2014 article on the American Psychological Association’s website,”Women and mild TBI“, which makes some great points about how the designation of “miserable” and “minority” blurs the topic and puts the focus on psychological, rather than organic issues, thus missing the mark in terms of understanding the true nature of “mild” TBI.

Not only that, but that choice of words / approach runs the risk of sending

“the message that “this is all in your head” (pun intended). . . unintentionally foreclos[ing] scientific inquiry, driv[ing] persistently symptomatic patients away from the resources meant to proffer support (to them and their families), [and] reinforc[ing] ugly .. . stereotypes”

The article focuses only on women, but you could expand the reasoning to include men — and children — in the population of concussed folks. It’s a great read, and it comes from someone in the mainstream — a professional, no less, which gives me hope. Check it out — I think you’ll like it.

Brava to that. Clearly, there is a gender component to professional understanding and treatment of concussion/mild TBI. But only recently have researchers discovered significant differences in how men and women are brain injured and heal. It’s been a long time, coming, with countless individuals marginalized and stigmatized, simply because the folks who were treating them didn’t take them seriously.

Now that new imaging techniques are coming out and researchers are finding (and talking about) the fact that men and women may have very different experiences before, during, and after concussion, I’m hopeful that some of the really harmful materials that have steered (mis)treatment will be revised, with the harmful parts thrown out.

This isn’t isolated to women, either. PCS occurs with men, as well. And one of the dangers that comes along with a gendered focus, is that the men who suffer from prolonged symptoms may get lost in the shuffle. There’s so much activity — flurry-flurry-flurry — rush-rush-rush — around concussion, these days, that people seem to be racing towards conclusions without stopping to consider all the aspects.

Sure, it’s only human to do so, but what about the human cost?

Ultimately, it’s going to take a lot of rethinking, a lot of advocating, and a lot of promotion/publicity to get people to change course. There needs to be a compelling reason to do so, or professionals aren’t going to deviate from their preordained patterns. Even if it means they “risk coming up on the wrong side of history (again)” as the Gorgens article says, unless there’s an overwhelming body of proof — as well as incentive to go with it — providers are going to keep on keeping on their usual track.

Where that leaves us, I’m not sure.

I know there are some providers out there who are interested in learning more about how to better help the folks who continue to suffer with post-concussive issues. And I know there are some who are genuinely curious and good-hearted, who want to do the right thing. We just need more information out there about the cutting-edge research that’s being done, and some advocacy would help.

There are folks who are doing that, but they/we are few and far between.

Still and all, if we get the right information in to the right hands and provide the right motivation, who knows? We might just be able to move that needle in the right direction.

Classification and Complications of Traumatic Brain Injury – still much work to be done

Medscape has a helpful guide to Classification and Complications of Traumatic Brain Injury – http://emedicine.medscape.com/article/326643-overview, with a clear indicator that much, much more needs to be done to expand awareness of TBI complications.

See the following list of Complications”

Complications include the following:

  • Posttraumatic seizures: Frequently occur after moderate or severe TBI
  • Hydrocephalus
  • Deep vein thrombosis: Incidence as high as 54% [6]
  • Heterotopic ossification: Incidence of 11-76%, with a 10-20% incidence of clinically significant heterotopic ossification [7]
  • Spasticity
  • Gastrointestinal and genitourinary complications: Among the most common sequelae in patients with TBI
  • Gait abnormalities
  • Agitation: Common after TBI
  • Chronic traumatic encephalopathy (CTE)

Long-term physical, cognitive, and behavioral impairments are the factors that most commonly limit a patient’s reintegration into the community and his/her return to employment. They include the following:

  • Insomnia
  • Cognitive decline
  • Posttraumatic headache: Tension-type headaches are the most common form, but exacerbations of migraine-like headaches are also frequent
  • Posttraumatic depression: Depression after TBI is further associated with cognitive decline, [8, 9] anxiety disorders, substance abuse, dysregulation of emotional expression, and aggressive outbursts

It’s a start, but it’s nowhere near as comprehensive as it needs to be. And this is a September, 2015 article.

Granted, it’s helpful that they point out: Long-term physical, cognitive, and behavioral impairments are the factors that most commonly limit a patient’s reintegration into the community and his/her return to employment. 

But not fleshing out the list of known issues, paints only part of a picture and doesn’t equip readers with the appreciation of the depth and scope of issues that can really do a number on TBI survivors. Leaving out those details really puts our doctors at a disadvantage, which I’m sure they do not appreciate.

We really need more — both patients and doctors deserve better.

Traumatic Brain Injury—Focus on Heterogeneity, Secondary Damage

A fascinating read I just found out about via Twitter: http://www.alzforum.org/news/conference-coverage/traumatic-brain-injury-focus-heterogeneity-secondary-damage

From the text (emphasis is mine):

TBI Beyond Tau
Overall, few of the talks at SfN focused on tau, instead highlighting other aspects of brain damage. Michal Vascak in John Povlishock’s group at Virginia Commonwealth University, Richmond, detailed what happens to axons after brain injury. Vascak used a model of mild TBI in which a device rapidly injects a small volume of saline into a mouse brain, subjecting cells to a fluid concussion wave. This does not cause brain lesions or hemorrhages, but a diffuse, widespread axonal injury ensues as fragile neuronal connections twist and shear around the injury site. Moreover, even those axons that do not break may be affected, Vascak said. He reported that two days after injury, intact axons did not fire properly. He wondered if this might be due to changes in the axon initial segments, where action potentials are generated.

To get a closer look at those segments, Vascak used confocal microscopy to image individual uninjured axons in postmortem mouse brain two days after injury. Using specific markers to identify the ends of initial segments, he found that the distal end had shrunk by about 2 μm. Since this end triggers action potentials, the change would alter neuronal firing properties, and that in turn might affect overall network excitability, Vascak suggested. The data demonstrate that TBI can affect the properties of even intact axons.

Read the full article here: : http://www.alzforum.org/news/conference-coverage/traumatic-brain-injury-focus-heterogeneity-secondary-damage

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