TBI severity needs to be redefined (Dr. Ramon Diaz-Arrastia)

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Table of contents
Dr. Ramon Diaz-Arrastia
Post-concussion syndrome is a brain injury
“Concussion” is a misleading word
The current TBI severity classification is outdated
Accurate concussion diagnosis and prognosis
Active concussion recovery is essential

Introduction to this episode on TBI severity

TBI (traumatic brain injury) severity is currently classified as severe, moderate and mild traumatic brain injury. These severeness levels imply that one brain injury is worse and has worse consequences than the other. It is true that severe brain injuries are often life-threatening and it is therefore a severe injury. 

On the other end of the spectrum, mild traumatic brain injuries (concussions) are expected by people to be mild. However, about 50% of people with a mild traumatic brain injury have not fully recovered 6 months after injury. There is nothing mild about a concussion.

Dr. Ramon Diaz-Arrastia pleads for changing the way the medical system currently ranks TBI severity. What follows is the transcript of 1 out of 2 Concussion Stories episodes with this outspoken expert involved in leading research on traumatic brain injury.

Concussion Stories

[0:00 Melanie] Welcome to Concussion Stories, a Lifeyana podcast series filled with hope. I’m here to let you know that you are not alone in your concussion recovery. I’m Melanie and I spent more than six years experimenting, training and learning in order to heal myself from a very bad case of post-concussion syndrome. And today, I feel better than ever before.

In Concussion Stories, we dig deep while discussing hopeful stories of recovery, as well as the hard stuff in the messy middle. If you’re struggling to focus, be sure to take breaks. Down in the description of each episode, you can find a table of contents – in case you want to skip ahead. Let’s dive right in. 

Dr. Ramon Diaz-Arrastia

Dr. Ramon Diaz-Arrastia

Dr. Ramon Diaz-Arrastia is Director of Traumatic Brain Injury Clinical Research at the University of Pennsylvania. He is involved in TRACK-TBI – one of the three largest ongoing studies worldwide on traumatic brain injury. And he is executive committee member of INTBIR, a worldwide coalition of scientists who are working hard on TBI research. (TBI, by the way, means Traumatic Brain Injury.) 

TBI diagnosis needs to change

I really wanted to host him on Concussion Stories because he is as outspoken as one can be about how current TBI diagnosis needs to change. By constructively criticizing the current system, he gives recognition to everyone feeling lost after their concussion, post-concussion syndrome or mild traumatic brain injury diagnoses. So let’s not wait any longer and hear what Dr. Ramon Diaz-Arrastia has to tell you. 

Family time and woodworking

[1:40 Melanie] Outside of work, what do you like to do and who do you like to spend your time with? This is my favorite question to start with for listeners to get to know you a little bit.

[1:50 Dr. Ramon Diaz-Arrastia] I don’t have that much time outside of work. But the time that I do have, I like to spend with my family. I have my wife and four children. 

And I have recently picked up a hobby of woodworking which is something that I had liked to do all my life, but now I have some space to set up a woodworking shop and buy some tools and equipment. So that’s kind of the new hobby that I’ve picked up over the last four to five years – making different things, sort of small pieces of furniture, little useful items for the house and things like that.

Using his hands alongside office work

[2:02 Melanie] Is woodworking similar to your job or just completely different and that’s why you like it?

[2:35 Dr. Ramon Diaz-Arrastia] Well, it’s actually somewhat similar to what I used to do. I am a scientist as well as a neurologist. And back, many years ago, when I was a student, I was an assistant professor starting up in my laboratory. I would do a lot of work in the laboratory. This means using sophisticated equipment and running assays and doing experiments and I like doing things with my hands. 

Then really for the past many years, I had to give that up and my work has really been exclusively in the office: writing papers, writing grants, mentoring junior people, etc. So I do miss doing things with my hands. I think that’s kind of what the woodworking hobby has replaced.

[3:30 Melanie] Thank you for sharing. That’s a really interesting thing to know. It’s something really different than the standard topics we talk about, of course, on this podcast. 

Post-concussion syndrome is a brain injury

Post-concussion syndrome is a brain injury

As someone who’s immersed in traumatic brain injury, not only now but you have been for many years, not only in research but also in practice, could you maybe give us a bird’s eye view or perspective of how we should feel concussions and post-concussion syndrome knowing what we know now?

The old belief: a concussion is no brain injury

[4:05 Dr. Ramon Diaz-Arrastia] This is something that has really evolved a great deal during my career. When I trained in neurology, when I was a resident, the usual teaching was that concussion was a purely physiologic process. It was a result of changes in neurotransmitter concentrations and ionic gradients across neurons, and there was a transient effect, and everybody recovered from it. 

It was never associated with any brain injury, per se, meaning, any permanent change in brain structure. The usual teaching was that people who have a concussion sometimes will have mild symptoms that may persist for a few days or maybe a week or so. 

Long-term concussions were seen as psychological

But if it goes beyond that, then it’s psychological. Then they are malingering, or they have a conversion disorder, or it’s a problem for a psychiatrist and not a problem for a neurologist. 

That actually was the standard teaching for many, many years. We’re talking up until about the mid-1980s, the early 1990s or so. Obviously, when I trained, I was taught by learned old men and you believe them. And then I went out and started setting up my practice. 

Epilepsy and traumatic brain injury

My clinical specialty is in epilepsy. So I became interested in the process by which a previously normal neural circuit becomes epileptic, and becomes able to sustain epileptic seizures. I realized fairly early on in my career that studying epilepsy after brain trauma would be actually a very tractable area of research. 

We knew quite a bit about brain trauma, we knew a certain frequency of how epilepsy happened after brain trauma, but we didn’t know a lot of the details from the point of view of neurobiology, from the point of view of imaging, from the point of view of biomarkers, etc. So that’s what I decided to set my career on. 

The same symptoms for all brain injury severities

Obviously, most people who develop seizures after brain trauma do so after a more severe brain injury. On the other hand, I would get patients with “concussions” – mild brain injuries  – who would come to see me in the office. What I very soon realized is that these people were not malingering, they were not having conversion disorders, and it was not a primarily psychological problem. 

They were complaining about exactly the same symptoms that my other patients who had had more severe brain injuries and had recovered to a similar degree were complaining about. They were complaining of headaches. They were complaining of fatigue. They were complaining of problems with memory. They were complaining of depression, anxiety, irritability. They were complaining of sleep disorders: exactly the same pattern. 

Post-concussion syndrome is an organic brain disorder

That really was what convinced me that this traditional teaching that if the post-concussion syndrome lasted more than a few days to a few weeks, it was a psychological problem… It clearly is not a psychological problem. It’s an organic brain disorder. 

I think over the years, this has been confirmed. In fact, now we know that a clinically evident concussion or mild traumatic brain injury resulting in either transient loss of consciousness or transient post-traumatic amnesia that inevitably, every single one of those cases, is associated with organic brain injury that can be detected with sophisticated neurobiological tools, such as biomarker test on the blood or sophisticated magnetic resonance imaging. 

Subconcussive impacts are detectable brain injuries

In fact, what we’re discovering is that even subconcussive impacts – impacts to the head – that do not result in the clinical syndrome of concussion, such as can occur during athletic events – occur very commonly during athletic events… That even subconcussive impacts are associated with a very small but detectable leakage of brain proteins into the blood or changes on magnetic resonance imaging, etc. 

Which frankly should not be a surprise. We know from other areas of medicine that there is such a thing as subclinical myocardial ischemia, and subclinical stroke, and subclinical multiple sclerosis. 

So it shouldn’t at all be a surprise that there is such a thing as subclinical traumatic brain injury. That’s usually of very little consequence, except as is the case in athletes, particular sports, that these subclinical traumatic brain injuries occur dozens, hundreds, and even thousands of times over their career. So they do add up and that can be a problem. That’s really an important realization and it’s surprising that it took so long for us to realize it, but it’s clearly the case. 

“Concussion” is a misleading word

Concussion is a misleading word

So my view is that actually I do not like to use the term “concussion” because it is so misunderstood. It’s deeply ingrained in the language. So it’s gonna be hard to totally get rid of it, but it’s really a very misunderstood term. It misleads everybody. 

People expect to recover within a few weeks

You tell someone they had a concussion, the normal expectation is: I’m going to get better in a few days or at most a couple of weeks. And luckily, that’s true for most people. But somewhere around 15-20% of people who experienced a concussion syndrome did not recover within a few days or a few weeks. In fact, it may take them months or years.

A “mild” traumatic brain injury can have major consequences

Then the other problem is that historically, we have called these things “mild” traumatic brain injuries, which implies that it may be a brain injury but it’s not going to have great consequences. That, frankly, is not true in… not the majority, but in a significant number of people. 

Brain injuries have major consequences in terms of the ability of people to return to work, return to school, return to work in some capacity, manage their affairs, deal with their family responsibilities. So, there’s nothing mild about that.

Communication about a concussion is hard

[11:18 Melanie] No! And in fact, I think you wrote along with your colleagues that the current TBI severity classification is misleading with regard to the uncertainty of outcome that patients face, but also their family members. It’s also misleading when it comes to the message they have to communicate to their teachers, to their colleagues, their bosses. It’s a misleading concept in itself because of where we are coming from.

The current TBI severity classification is outdated

The current TBI severity classification is outdated

[11:52 Dr. Ramon Diaz-Arrastia] So what we wrote in that paper, which Dr. Olli Tenovuo from University of Turku in Finland was also my other main co-author. What we wrote in that paper was really the argument that we should get rid of the terms mild, moderate and severe, because they are really misleading. They mislead our patients, they mislead the general public, and frankly, they mislead other medical professionals. 

TBI risk scaling

I think a more accurate way, which is not perfect either, would be low risk, medium risk and high risk. I think that is actually reasonable, because there is a difference between an impact to the head and to the brain that results in brief unconsciousness or brief amnesia without prolonged coma. That’s by far the majority of people sustained impacts to the head. 

Low-risk traumatic brain injury

So these are people who come to the emergency room after an automobile accident,  a bicycle accident, a fall, or whatever. 90% are going to be classified in that category. The good news is that the majority of them do pretty well, probably at least 80%. 

On the other hand, 20% of a very, very large number is still a very large number. But overall, they are relatively low risk – relatively low if you call 20% low. 

Medium-risk traumatic brain injury

On the other hand, people who sustained a more severe brain injury, meaning that they had a period of unconsciousness that may have lasted for several hours, a period of post-traumatic amnesia that may have lasted several days, well, their chance of making a recovery is not as good. 

Their chance of making a recovery, meaning that they are back to work or back at school in the same capacity as before, is probably only about 50%. So much lower than 80%. So we thought that it would be reasonable to call those people medium risk traumatic brain injury. 

High-risk traumatic brain injury

And then of course we have more severe injuries. These are people who are comatose, who require intensive care management to allow them to survive, they may require neurosurgical procedures, etc. The chance of those individuals making a complete recovery is only about 20%. And by the way, 20% is actually pretty good given how sick these people are. 

We thought it made sense to call them high risk traumatic brain injury. So the nosology of low risk, medium risk and high risk I think it’s a little better than the nosology of mild, moderate or severe.

Recovery can take long if you have a concussion

[14:52 Melanie] Thank you for explaining that. Personally, in my experience, having been through a mild traumatic brain injury myself and making a full recovery six and a half years after injury, I feel that the most value this new framing of brain injury brings – would have brought me – is the fact that you already highlight at the beginning that recovery can take long if you have a mild traumatic brain injury. It can also take short, but there’s not a normal, there’s not a standard. There’s an average maybe. There’s a mean. But it’s variable and it depends on so many factors. 

Accurate concussion diagnosis and prognosis

Last week, I spoke with a professor from Oslo University and she is involved in CENTER-TBI. She has researched, for example, the effects of male versus female effects on the outcome of mild traumatic brain injury. And the differences are significant. 

That is just one of the things that predicts outcomes. You already mentioned biomarkers. We know that DNA has markers, for example, but also, if people are athletes. There are so many factors, so many complexities. 

The TBI severity terminology undermined my agency

And had I known this at the beginning, I wouldn’t have felt like I was doing something wrong not recovering. Because that was the feeling for the first two years. I was just completely lost about what was happening with me, because the framework just wasn’t right. Well, the framework wasn’t right and I wasn’t looking for other answers because if doctors tell you something, generally you accept.

[16:55 Dr. Ramon Diaz-Arrastia] I think you raise a very good point. 

Traumatic brain injury therapies

Unfortunately, we do not have therapies for traumatic brain injuries, certainly not for low risk traumatic brain injury. We’re working very hard to try and develop those therapies, but it’s a tough issue. It has been a tough issue. 

There are very exciting studies in animals that several treatments, drug treatments or other non-pharmacological treatments can improve outcome, but it’s really not been possible so far to extend those results from animals into humans. 

The need for accurate brain injury diagnosis and counseling

On the other hand, accurate diagnosis and accurate counseling itself is very therapeutic. There have been studies done along those lines. If you tell people: you’ve had a brain injury and it’s a low risk brain injury. Chances are that you will recover, but it may take you a while. You should adjust your lifestyle for the next several weeks or even next several months to see how you’re doing.  

Frankly, that is counseling that is often skipped when folks are sent home from the emergency department. There’s nothing wrong with you, go home. And people believe that and then they try to resume a normal life, which means that if they had an important exam the following week, they go in and try to take the exam and they may well fail, because they had a brain injury. 

Or they tried to go back to work and they had an important business meeting or an important work assignment that they just aren’t able to do. They keep trying and they end up losing your job. That’s actually very common. 

So accurate counseling and accurate prognosis itself can be very therapeutic. And obviously, eventually, we want to develop therapies. But until we get there, I think being accurate in the language we use in the counseling that we provide can go a long way.

“Mild” concussion diagnosis is bizarre

[19:10 Melanie] Absolutely, I agree. One of the things that also stands out to me is: the thing I was diagnosed with was not only mild traumatic brain injury, but my concussion was “mild”. So I had a mild concussion. So it’s like they would say: mild mild traumatic brain injury. 

Only just this weekend I was scrolling through social media, I was seeing a person that I know who was now diagnosed also – still – with mild concussion. And the only thing I can think is, “How can your concussion be mild? It’s a brain injury. It’s never mild.” 

This is a thing that continues to… Even though the field is changing, and especially research is changing, for which I’m so grateful… But in practice, I still see so many people being diagnosed with these labels that I feel are outdated. 

Active concussion recovery is essential

Active concussion recovery is essential

People are being given advice that is outdated. For example, they are being advised to take a more passive approach to recovery rather than an active approach to recovery. Do you recognize this as well or is this different for you?

Cocoon therapy for concussions

[20:25 Dr. Ramon Diaz-Arrastia] I think this is something that there has been a lot of advances on. It used to be said that if someone had a concussion, a mild brain injury, low risk brain injury – let’s try and use what I think are better terms – you know that what they should do is to go cocoon themselves, go into a dark room and not do anything, not read, not watch television, not go and use your phone or anything like that. 

And it turns out that that’s exactly the wrong advice. People should be advised to do whatever they can. If they have a very severe headache, maybe they should go to bed. But if they don’t, then they should try and do whatever they can. 

All of medicine is focused on active recovery

And frankly, that’s the case in other areas of medicine as well. It used to be that if someone had a myocardial infarction, the traditional treatment after a heart attack was to put someone in bed for two or three weeks. And we now know that’s exactly the wrong thing to do. That’s a myocardial infarction. But once the ischemic event is over, get him into a rehabilitation program as soon as possible. Same is true for other areas of medicine. 

I think fortunately, that practice has largely gone away, although not completely. I do think we need to do a better job in educating other medical professionals or colleagues in other areas of medicine about the management of concussions, which are really very, very, very common.

Part 2 with Dr. Ramon Diaz-Arrastia

Part 2 with Dr. Ramon Diaz-Arrastia

This was part 1 of 2 Concussion Stories episodes with Dr. Ramon Diaz-Arrastia. Continue listening in our next episode to hear his ideas about hope, clinical trials and about the importance of sleep for your recovery.

Let me know what you think?

[22:15 Melanie] Now I would love to hear from you. What do you take away from this episode? Is there something that you can apply to your life right away? Head on over to lifeyana.com and leave your comment now. 

And if you want to hear and read more concussion stories, actionable steps and inspiration, be sure to subscribe to the Lifeyana email list while you’re there, so that you never miss out on new materials we constantly make for you. If you want to support this podcast, head on over to patreon.com/concussionstories

Thank you for listening to this Concussion Stories episode by Lifeyana. May you be well, and may you be happy.

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