How and why the medical system routinely fails people with brain injuries
Many are treated as if they have some rare illness rather than a common injury
In December, 2020, I read the Los Angeles Times story about volleyball star Haley Hodson’s struggles with post-concussion syndrome. She had access to some of the finest medical institutions in the world, and yet they still botched her case.
Reading that story was one of the things that motivated me to create an informational resource for people recovering from brain injuries and post-concussion syndrome (which is the thing you’re looking at now, Brainwave).
Thousands of people suffer a concussion or TBI every year, but based on the way they’re treated, you would think they had some exceedingly rare disease.
Why does the medical system routinely fail patients with brain injuries?
There are of course many answers to this question. Let’s explore some of them, hopefully without getting too upset about the staggering volume of needless suffering that each of these failure points perpetuates. Who knows, this might even lead to some changes.
Lack of education and training in medical school
Fun fact: It wasn’t until the year 2015 that neurologists in the United States began receiving any training in the treatment of concussed patients as required element of their education.
When I suffered a sports-related concussion and the symptoms didn’t go away, I went to see my primary care doctor, who sagely explained, “You got your bell rung” (this statement is a common indicator of ignorance).
I was told to wait it out and avoid triggering my symptoms. He told me it might take up to a year to feel better, but eventually I would. Just hang in there. Nothing to do but wait.
This is not an unusual experience, but rather an example of a systemic problem (again, see Haley’s story linked above). Some version of that interaction happens in doctor’s offices around the United States every day.
As it turns out, the average primary care physician knows very little about brain injuries, having received little education or training about such injuries in medical school—and the older a physician is, the more outdated their views are likely to be. We walk into their offices assuming they know much more than they do. We trust them completely, believing they know all about this. They simply don’t.
Compounding this problem is the fact that, for many patients in the US, the healthcare system—the means by which we receive care—rests almost entirely on a relationship with a primary care doctor. Depending on your insurance plan, some or even all specialist referrals must go through this assigned gatekeeper.
Not only that, you‘re expected to circle back with the gatekeeper, who’s expected to put all the pieces together based on the prescriptive advice of multiple specialists. Most of us wind up educating our primary care doctors because, sadly, it doesn’t take long to know more about brain injury treatment than they do. Anyone with a chronic condition is familiar with the problem of knowing more about it than your primary care doctor, but it’s especially difficult for someone with a multimodal nervous system injury. And you can imagine how dispiriting that is.
An injury requiring integrated multimodal care in a system with no mechanism for delivering or coordinating it
In the course of your treatment, you’ll see a variety of specialists. Not only do they rarely talk to each other, in the vast majority of TBI cases, no one is putting the pieces together or coordinating your care in any way.
You see a specialist. They punt you to someone else. You wait months to see that guy. Repeat. Each specialist sees your symptoms through the lens of their particular specialty. Meanwhile, your multimodal nervous system remains in complete disarray.
By default, you—the patient with the brain injury—are the sole person coordinating your care. Actually, it’s worse than that.
Since most doctor don’t know what treatment options are available, you’re also having to research and vet possible treatments. Heck, if your only problem was coordinating your care within known protocols, that would be a breeze by comparison.
So most patients with a brain injury are forced to define and determine much of their treatment plan from scratch, with near-zero guidance. When you multiply this by many thousands of patients, the level of malfeasance is both staggering and indefensible.
A total absence of patient education about available treatment options
Due in part to your doctor’s lack of training about the breadth of treatment options available (in fairness, the system does not support ongoing multimodal training and education), you might remain completely in the dark about treatment options that could really help.
I’m not talking about unproven fringe treatments. In all likelihood, your primary care physician doesn’t know about mainstream treatment options, some of which are provided under the same roof they work under.
I can’t tell you the number of times I’ve discovered a treatment option months or years after my injury, and wondered why in the holy hell no one had told me about it before. One of my primary aims in building Brainwave is to shorten the amount of time it takes someone to survey the various treatment options. (Here’s what we’ve covered so far.)
For-profit healthcare’s emphasis on cost control
The last time I took a sports-related blow to the head, I sat in a doctor’s office and asked about brain imaging. I was told there would be no imaging. I asked how many concussed patients walked through his front door every day. He said about a dozen. “And none of them receive imaging?” And with a completely straight face, he said, “Think of the savings.”
I imagined the total volume of human suffering perpetuated by this one individual working within a system that rewards him for controlling costs.
That doctor offered to punt me off to the people who do physical and occupational therapy. Nothing else. And while those treatments are an essential piece of the recovery puzzle, they’re only two of the many things that can improve the condition of a post-concussive patient. (Again, I’m not talking about fringe treatments here.)
This man is the head of a university hospital’s concussion care center, responsible for the care of more that 4,000 newly concussed patients a year. Again, think of the savings.
One of the easiest ways to control costs is to make the patient feel a sense of learned helplessness, one of the saddest conditions any of us can acquire.
A “black market” of expensive brain injury clinics
With the mainstream medical system failing to serve patients with brain injuries, it should come as no surprise that a cottage industry of expensive brain injury clinics are ready and willing to take on patients.
These clinics typically charge around $10,000 a week. Existing outside the medical system, they take no insurance. And while they claim to produce results for patients (and probably do produce some results), they’re under no obligation to demonstrate efficacy. You might have looked at these clinics and wondered whether they’re worth it.
A brain injury is a neurological injury, and neurological recovery typically takes time. How much progress are you going to make in a single week?
If you went to a $10,000-a-week tennis camp, would you be a significantly better player one week later? You would likely be improved. Your specific deficiencies would have been addressed. Ideally, you’d learn concepts that could serve as a framework for moving forward, and leave with a toolset you could build on through continued targeted practice.
When I look at the reviews of these clinics, one clear theme emerges. Patients are thrilled to finally receive the multimodal care they clearly needed for a multimodal injury to their nervous system. The fact that they can receive such care in a guided way at a single location seems miraculous.
It isn’t miraculous. It shouldn’t be hard to do. The fact that such integrated and guided care is completely unavailable within the medical system is a real shame.
Patients who can afford to pay a clinic $10,000 a week may or may not benefit, while those who can’t afford these sums will never know. And those of us who can’t afford it have been paying health insurance premiums for years (many tens of thousands, all told) on the assumption that we would receive quality care if and when we needed it.
The fact that a brain injury is neither acute nor chronic, and not easily “solved”
The treatment protocols for acute and chronic conditions differ. In many ways, the US healthcare system excels at acute care.
The care a patient receives in the emergency room after, say, a skull fracture, will almost certainly outclass the care that same patient receives in dealing with post-concussion syndrome.
Americans aren’t keen on dealing with chronic conditions in general. It’s a cultural thing. We’re can-do people who like to believe all problems are solvable. The shadow side of this is that we don’t do well when faced with problems that aren’t easily solved.
This cultural predilection for the solvable problem befouls the care that a patient receives in the aftermath of a brain injury. Many patients with TBI are effectively put on a bus out of town and dumped off in the middle of nowhere, unsure what they’re even doing or why.
Sure, there’s no magic-bullet acute care option for TBI. But it isn’t a static chronic condition, either. We, the patients, have to rehabilitate ourselves over time with the assistance of others. Since most of the effort is on us, the least the medical system could do is create a functional framework for that effort, to guide and support it.
Doctors, masculinity, and vulnerability
Relative to the other failure points mentioned here, this might seem trivial, but don’t underestimate its impact.
Never mind that construction workers, soldiers, and athletes suffer TBIs no matter how mentally or physically tough they are, some male doctors are going to think of them as pussies. If you’re male, they might have weird hangups about their own masculinity (or really their own vulnerability), triggered by you or your story. If you’re not, they might dismiss you entirely—it’s all in your head, honey.
If a male doctor takes more interest in the narrative details of your injury than in the medically relevant details, that’s a telltale sign that his perceptions may be distorted by wrongheaded beliefs. Those beliefs can be a real poison pill. They will create barriers to proper care.
My general rule: Whenever I have a choice between seeing a male or female doctor, I choose the woman every time.
Asking too much of primary care physicians
In recent years, there’re been a lot of discussion about systemic problems in law enforcement, and one of the conclusions people often arrived at was this: We’re asking too much of police officers by expecting them to provide a wide array of public services, including intervening when people have mental health problems. Training them better to do a narrower scope of duties while unburdening them from other duties is seen as a potential way forward.
While the context and the challenges are completely different in medicine, when it comes to handling patients with brain injuries, it seems to me that we’re asking too much of primary care physicians. Some combination of focused training and unburdening them is probably appropriate—if not a complete reimagining of how the system serves patients with brain injuries.
The amount of unnecessary suffering perpetuated by the medical system’s routine mishandling of post-concussive care is staggering to contemplate, given the volume of head injuries that occur each year.
Patients with brain injuries are the ones coordinating their care. Worse, they typically receive no information about the treatment options available to them, in part (but not entirely) because the organizations caring for them are focused on cost control.
When primary care physicians receive little training about brain injury recovery, they are ill equipped to serve as the root of a decision tree about such care. So we not only have to coordinate our care, we have to figure it all out ourselves. Meanwhile, our symptoms persist and our suffering deepens. We lose jobs, relationships, and more.
Instead of learning anything useful from the “black-market” clinics serving people with brain injuries, the medical establishment turns up its nose, and turns a blind eye. Patients who can afford these clinics may or may not benefit, while those who can’t will never know.
Within a system that fails TBI patients in so many large ways, small things that should be inconsequential have an outsized impact, including any given doctor’s wrongheaded notions about gender and vulnerability. Things that should have no bearing on defining or delivering care become ruinous barriers.
Since post-concussion syndrome doesn’t neatly fit into the categories of acute or chronic care, too often it falls between the cracks. Patients receive little care, or totally fragmented care, or just a small fraction of the care they would receive if that care was considered, coordinated, sequenced, or managed adequately, if not well.
It’s hard to write (and difficult to read) a post that focuses largely on problems rather than solutions. I know that reading this will be emotionally difficult for those of you who’ve personally experienced these systemic failure points.
I hope you can take consolation in knowing that you’re not alone in your experience. I also hope this post will help you bring other people up to speed on the challenges you face in finding, receiving, coordinating, sequencing, and managing your own care.
Lastly, I hope that understanding these systemic issues will better equip you to deal with, offset, avoid, or counteract them. Who knows—this information might even help you have a productive conversation with certain care providers.
Brainwave is an informational resource for people whose symptoms haven’t resolved after a concussion or mTBI. I endeavor to present this information in a clear and concise way, spelling out what’s backed by science and what remains unknown. Nothing here is meant as a substitute for professional medical advice, diagnosis, or treatment. I am not a physician or a healthcare practitioner of any kind; I’ve simply had a lot of sports-related concussions and had to learn this stuff the hard way. If you found this information helpful or know someone who might benefit from it, please share and subscribe to Brainwave.