Table of contents:

00:45 Andrew Maas
02:53 Traumatic Brain Injury (TBI) Research
03:32 CENTER-TBI
05:12 Mild TBI is NOT so mild
08:58 Concussion diagnosis and treatment
09:31 It’s the patient that matters
11:04 Concussion awareness
16:10 Changing mTBI treatment
23:24 Andrew’s research: concussion care is insufficient

Introduction to this episode on mTBI

In this Concussion Stories episode, Emeritus Professor Andrew Maas and Melanie talk about mTBI (mild traumatic brain injury, or concussions). Andrew is a retired neurosurgeon. But he is not your classic retiree. He is co-leading one of the largest scientific study on TBI (traumatic brain injury) ever done.

In this epic episode, Melanie finally experiences the acknowledgment that she and many others never got in the medical system. This is a must watch episode if you feel like you’re not heard and if you feel lost in your concussion recovery. You are not alone in this!

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.

Andrew Maas

[00:45 Melanie] Today, I’m so happy to speak with Andrew Maas. Andrew is Emeritus Professor of Neurosurgery at Antwerp University Hospital in Belgium after having been head of the department of Neurosurgery in that same hospital. He has also spent a big part of his career as a neurosurgeon at Erasmus MC in Rotterdam.

CENTER-TBI

Andrew is now retired, but is still very active. He is the Principal Investigator of the CENTER-TBI study, which is why I’ve gotten in touch with him. CENTER-TBI is a large European research project that aims to improve the care for patients with Traumatic Brain Injury. It is part of a larger global initiative with many research projects ongoing in Europe, the US and Canada.

Concussion research

Now, I know several of you have had bad experiences with specialists and hospitals – as did I. So believe me that I won’t pass the mic to just any specialist on Concussion Stories. Andrew is involved in a lot of the most cutting-edge research being done on TBI at the moment.

Studying his publications, it is my experience that Andrew is open to wherever findings may lead him, not afraid to simply point out the failings of a status quo that is no longer helpful. Those are traits I value, especially in a field that needs as much change as the medical field of TBI does. Let’s hear Andrew Maas.

Introducing Andrew

[02:16 Melanie] Welcome to the concussion stories podcast, Andrew, and thank you for being here with us.

[2:20 Andrew] Thanks. It’s a pleasure to join you. Happy to contribute!

[02:27 Melanie] I’m glad to hear. So even though you are officially retired, I really want to thank you for your time because you are not one for withering away on a beach somewhere. Am I right?

[02:38 Andrew] Right. And being retired doesn’t mean doing nothing. In fact, I find myself just about as busy as always.

[02:50 Melanie] How come? What are you spending your time on?

Traumatic Brain Injury (TBI) Research

[02:53 Andrew] I’m mostly spending my time on research: research into traumatic brain injury, TBI. I lead a… I’m still leading actually, a large scale project in Europe called CENTER-TBI. I do that together with my colleague from Cambridge, David Menon, who is head of the intensive care there.

And that’s a large-scale project, which was supported by the European Commission, one of the funding programmes. It’s like a small management business, running a study like that.

CENTER-TBI

[03:32 Melanie] So can you tell us a bit about the CENTER-TBI project? So: how come it was so important what you were doing and what exactly were the things that you were hoping to achieve – and are still hoping to keep because as I understand, it’s ongoing?

TBI is a huge worldwide health problem

[03:50 Andrew] We can talk for a full day on that. I’ll try and summarize in a couple of sentences. Traumatic brain injury, many people don’t realize it, but it is a substantial public health burden throughout the world. On a global perspective, the estimates are that about one out of every two people will suffer a TBI sometimes during their lifetime.

The total costs worldwide due to the injury itself and the indirect costs after that because of disability, etc., they amount to about 400 billion US dollars. Which equates to about 1 dollar or one euro out of every 200 of the gross economic product.

Long term effects of traumatic brain injury

So it’s a substantial problem from the global health perspective, but more in particular for the patients and their relatives who have suffered a TBI. Because many have long lasting complaints. And actually, that was one of the things that came out of CENTER-TBI.

Mild TBI is NOT so mild

We’ve learned that what was still called mild TBI is in fact not so mild. Of patients who would meet the definitions for mild TBI, which is rated according to the level of consciousness, we found that approximately 50% do not reach full recovering by six months after injury. That is a tremendous amount.

Post-concussion symptoms

And if you look at other outcomes, like health related quality of life, or post-concussion symptoms, and you include that in your scoring, then it’s about two thirds of the patients with mild TBI, who still have complaints at six months.

So the big message there is: mild TBI is not so mild. And 90% of all TBI is mild TBI. So if we could make a difference there, that would be a tremendous advance.

[06:29 Melanie] This is… thank you for acknowledging this. It feels wonderful to me personally to hear this.

I had mild TBI

[06:37 Andrew] Because, you had a TBI.

[06:39 Melanie] I had mild TBI. And I have felt like, a bit of… how do you say that, the black sheep? I have felt being weird, like doing something wrong myself, because I was not recovering. There were no protocols for me. I fell outside the regular medical system.

The medical system wasn’t interested in you

[07:00 Andrew] In fact, you didn’t go you feel that you were outside of regular medical system because they were not interested in you.

[07:11 Melanie] Okay, well, normally I don’t choose my words that way. But if you say that way, yeah, it has felt that way. Yes.

“No CT scan abnormalities means no TBI”

[07:17 Andrew] Yeah, yeah. And it’s also even within the mild TBI, many patients will undergo CT scanning, so computed tomography of the brain, to see if there’s any damage.

Most patients will show no abnormalities, and then medical professionals kind of are inclined to say: well, you did not have a very serious TBI. Maybe you didn’t even have a TBI at all.

TBI and legal procedures

And when you get into litigation procedures, that becomes a problem. Because there’s no objective evidence of having had a TBI. However, we looked at MRI scans in patients with TBI and a normal CT scan when they presented to hospital.

We find that 30% at two to three weeks after injury, show traumatic abnormalities on the MRI scan. So a normal CT scan certainly does not mean no structural damage to the brain.

[08:36 Melanie] No, I believe it’s actually mostly performed in order to exclude more serious trauma like brain bleed, for example, right?

[08:43 Andrew] Yes, that’s the way medical professionals look at it. But when we get into insurance like business, they will tend to say normal CT, no TBI.

Concussion diagnosis and treatment

[08:58 Melanie] No, and I believe this is one of the things that you have tried and are trying to do with CENTER-TBI right? You just mentioned all of these very significant numbers. And I’m even shocked by the “one in two persons will suffer TBI in their life”. I didn’t know that. 

But what you were trying to do is for all of these people’s people find ways to better diagnose; find ways to better treat, right?

[09:30 Andrew] Correct.

It’s the patient that matters

[09:31 Melanie] What I gather from all this is a very patient centered approach.

[09:37 Andrew] Yes, I mean, it’s the patient that matters. So what else do you want?

[09:45 Melanie] This is what a lot of us believe, of course, but this is not what a lot of us get from the medical system. Well, I would speak for the Netherlands, of course, for myself.

TBI expert and fighting dogmas

So it’s really wonderful again, to hear something like this coming back, and especially from someone who is the expert, because you have spent so much so many years on researching TBI and…

[10:10 Andrew] But that has a risk too. That has a risk that because you’ve been in the field for so long, you are biased into certain dogmas. And that’s something that I continuously fight against. I kind of critically look at myself: are you not to fixed on something? And let’s say: using healthy scientific critique. Is this really true? Is this valid? How certain are we?

[10:44 Melanie] Yes. You gather all the data and from the data with the most open mind that you can imagine you try to derive your conclusions.

[10:54 Andrew] Correct.

[10:54 Melanie] Yes. But of course, that’s also what science is for, right? You have peer reviews, and you have so many other studies following up on whatever you will find.

Concussion awareness

I think the most important thing for us right now, for the concussion community even, is the awareness that you’re creating, and all of the new information that we already know, but science hadn’t uncovered before about the seriousness and the implications of brain injury.

[11:26 Andrew] Yes, and that’s so important. Because one of the things we’ve learned is that no matter how good your science is, and how many scientific publications you produce out of a project, it is patients and patient organizations that can make a difference with policymakers.

Influence TBI policy

And that is one of the reasons why I’m so enthusiastic about what you are doing, because you are bringing patients together. And as an organization, as a group of patients, you can influence policymakers.

Of course, people are looking for drugs, for newer agents, which can make post-concussion complaints less and things like that. That’s important.

The structure of concussion care

But I think one of the lessons we’re learning, is that the structure of the care makes the biggest difference. That is highly relevant, because we find that the majority of patients with so-called, I can’t stop so-called, because it is so-called “mild TBI”, they don’t get any structured follow-up after discharge home.

And, in fact, we found that 90% of centers did not routinely schedule a follow-up appointment after discharge from the ER, and just under 50% did so after discharge from hospital. So patients are seen, they’re evaluated accurately, but then they’re sent into no man’s land.

[13:26 Melanie] Exactly.

The GP doesn’t know what to ask for

[13:26 Andrew] Without any care, maybe a message: go and see your general practitioner. Which many patients will not do. And even the GP doesn’t really know what to ask for. And patients themselves aren’t always aware of complaints in the early phase. And become aware of later on.

Appropriate patient care for mild TBI

[13:53 Melanie] It feels like you are telling my own story to me.

[13:57 Andrew] That’s good.

[13:58 Melanie] Yeah. So you have been listening, and I am not so afraid of that bias of yours.

It is indeed, the struggle that I have been, how do you say, putting forward, spreading the message about so much and and it has to do with indeed no immediate appropriate patient care for mild TBI – so-called. But also aftercare, indeed.

Taking rest after a concussion

The advice of taking rest after a concussion. Maybe for the first 24 to 48 hours, may be important, but still – that’s being doubted so much in research as well.

[14:42 Andrew] Yeah.

“Brain damage does not recover”

[14:43 Melanie] And then, after two years, especially for me, but I know it has been for others as well, the message from take rest, take it easy, make sure your brain is in this space where it isn’t stimulated too much so that it has a capacity to heal, the message turns and it becomes: brain damage that has been going on for two years or more will not repair.

Losing hope of recovery and choosing hope

And that’s the message that in the end made me – or I make myself – lose hope of recovery. And that made me tumble into depression. And in the end, I found that I had to make a choice. Because I didn’t want to lead the life the doctors advised me to accept.

And I chose that there had to be hope. And that’s when I started looking. And that’s when my entire recovery started, because there was hope. And I was finding it, for example, with researchers such as yourself. And I believe that you have one said that hope is as important as food in recovery.

[16:01 Andrew] Yeah.

[16:03 Melanie] I couldn’t agree more.

[16:04 Andrew] I can’t recall on what occasion that was, but it’s like me say that, yes.

Changing mTBI treatment

[16:10 Melanie] Yes. And having seen all the data that you have seen until now, what influence do you think that all of these more human aspects, that could be inside the TBI treatment, would have on patients and their recovery?

[16:33 Andrew] I think they could have a tremendous effect. I don’t know if I would call it human. To me, it’s medical approach. Let’s say: compassionate approach, feeling for the patient.

No matter how good medical care in the hospital is, no matter what type of miracle drug may come up at some point in time. To me the simple, but dedicated after-care and a system to ensure that every single patient has access to that, that will make a difference.

Improvement of concussion treatment

And in terms of improvement, I would see a few different dimensions. The first of course, is in, well, one of the dogmas, for example, which people believed up to a few years ago: brain cells – neurons – do not regenerate. Yes, they do. Stem cells can differentiate into new brain cells, we know that now.

Brain tissue does not recover. Well, it can. And moreover, where there’s a damaged part… The brain is hugely complex. But there are many connections. So other parts of the brain can take over certain functions from more damaged parts. That is part of improvement and of restoration of function.

TBI is not an event

[18:27 Melanie] I believe you have also written something about TBI should not be viewed as an event. That’s something that is a new paradigm as well. Am I right?

 [18:42 Andrew] Yes, actually it was one of my American colleagues who came up with that. But it’s absolutely true. And that was one of the dogmas that people believed in. It happens and after that, you can recover or you don’t, period. But we’ve learned that some patients can even deteriorate later on. So it’s a process.

And yes, there is a link between TBI and neurodegenerative diseases in later life, such as Parkinson’s, such as a Amyotrophic Lateral Sclerosis – ALS – and other diseases including dementia. So it’s a process. And it can be a lifelong process. Fortunately, not in all cases, but in some: yes it can.

Long-term effects of concussions

[19:40 Melanie] Yes, and I also don’t want some of our listeners now to get afraid of all these diseases that you just mentioned. It’s just that you’re really exposing all of the links that are there and all of the long-term effects.

[20:00 Andrew] Correct, it’s only a very small number of patients that will get that. But it is higher than in the general population.

[20:08 Melanie] Exactly, and it goes to show that TBI never is just one moment. And the care especially should focus on long-term improvement.

Coping with concussion effects

[20:22 Andrew] Yeah. And then apart from that, let’s say biological improvement, coping with the problems is absolutely relevant. And coping does not mean doing nothing and going to bed and rest.

To the contrary: it means accepting certain problems, working on them will improve them, but also while they’re still present: how to best deal with them? And there, professional advice can be a huge help. But you have to give it to patients.

[21:03 Melanie] Yes, exactly. And that’s the part that I call human; you call medical, but that’s the part and…

[21:10 Andrew] It’s the interface. Yeah.

A concussion impacts your whole life

[21:13 Melanie] Yes, we can call it psychological, whatever it is, it’s the helping deal with whatever is happening with you because a concussion – or also other versions of TBI – influence your whole life. Because this is your the center of your whole life. And if it’s broken…

[21:37 Andrew] It is you: it determines who you are.

Depression and grief

[21:40 Melanie] Exactly. And then this is also something that I have experienced during my recovery, especially when I was experiencing depression: that I was grieving. I was grieving for the life I no longer had, for the dreams that I knew I couldn’t achieve anymore – now I don’t want them anymore – but I was grieving in order to be able to let go of course.

And also of this life that others around me were living and I couldn’t be a part of. And these are things that have to do with coping indeed.

Coping helped me cure my concussion

And once I learned better how to cope, I was able to move from, I would say in my in my situation more a situation of victimhood where I felt like I was enduring my injury passively, into active things I could do, because suddenly I felt in control of my emotional state. And that’s what coping can do.

A broken mirror

[22:46 Andrew] Yes. One of the things you said a couple of minutes ago reminded me what of one of the patients once told me. He had had a more severe injury, or moderate actually. But what he said, after a couple of months, was, when I look at myself in a mirror, it’s like looking at myself in a broken mirror. And that, to me phrased it so well. It’s exactly as it is.

[23:18 Melanie] Yeah, yeah, that touches me.

[23:23 Andrew] Yeah.

Andrew’s research: concussion care is insufficient

[23:24 Melanie] I wanted to focus a bit on some specific quotes of yours because…

[23:34 Andrew] Oh dear.

[23:36 Melanie] Oh dear! Here we go. You have proofread them, so I know I can read them out loud.

Andrew makes strong statements to make a change

Because what stands out to me, reading your research is that – if I may say so freely – is that you really don’t beat around the bush. I am used to reading research and researchers writing, for example: these results may affect, these results may have implications, and everything is a “may”.

And I think, in general, researchers are very prudent with our words, which is very important, because, of course, research takes a long time to be validated. And it’s important to also be open, coming back to the bias again, to other possibilities.

But you don’t seem to use these words so often. You also have the capacity to make strong statements, in my opinion, if you feel that change is needed somewhere.

[24:43 Andrew] That’s easily explained: I’m Dutch.

[24:48 Melanie] That’s no excuse.

[24:50 Andrew] And Dutch can be fairly direct, they can be much more direct than other people. So I would say it’s an inborn error of – I wouldn’t say metabolism – but of…

Concussion protocols need to be changed

[25:10 Melanie] I would like to correct you because I don’t think it’s an error. I believe, especially in a field like this, where so much change is needed, itt’s well, at least highly appreciated, by me. And I think it’s also very important that we say to things like they are, and also where protocols or dogmas or ideas or whatever, don’t suit us anymore, that we make that explicit.

[25:42 Andrew] Um, I completely agree with that. And, of course, I do build in some caveat where it is appropriate. But in general, if you are fairly confident of your data and confident of your conclusions, you can make a much bigger difference if you phrase it in a slightly provocative way.

That’ll capture people’s attention. If you’re very careful: it may be this, but we’re not sure, it may also be that people will not be angry.

[26:20 Melanie] I agree, but then again, I’m also Dutch.

Acknowledgement for our listeners

I would like to read some of your statements to some of our listeners because I think that this will help in their sense of acknowledgement in the process that are going through. So I’d like to do that right now.

[26:38 Andrew] Yep.

Quotes from Andrew’s TBI research

[26:40 Melanie] At the bedside, treatment strategies are generally based on guidelines that promote a one size fits all approach, and are insufficiently targeted to the needs of individual patients.

Traumatic brain injury represents one of the greatest unmet needs in medicine and public health. TBI is not just an acute event, but can trigger a chronic process with progressive injury over hours, days, weeks, months and even years.

Research has greatly advanced our knowledge of the mechanisms involved. However, translating this research into patients’ benefit remains a challenge. One factor slowing down our understanding of traumatic brain injury is that our criteria to categorize traumatic brain injury are at best superficial, or ill defined an outdated.

Well…

[27:44 Andrew] Well that’s a direct statement for you.

[27:47 Melanie] That’s very direct. I want to thank you first, again for your work and also your advocating role because I believe you’re not necessarily working consciously as an advocate, but that is what it feels like to me, and I believe to a lot of our listeners, because…

The CENTER-TBI team

[28:07 Andrew] Glad to hear it. But let me say it’s, if we go back to CENTER-TBI. Yes, I may be the coordinator together with David Menon, but it’s a large team. It’s a team of over 14 scientific institutes, involving nearly 200 scientists worldwide, top scientists, and it’s an entire team. So I wouldn’t like to run away with all the laurels et cetera. It’s truly a team effort.

[28:48 Melanie] And it’s wonderful of you to acknowledge that because I believe so, of course. Having heard these statements, can you share your vision about what you feel is most important in the post-concussion or concussion care system?

Andrew’s vision of concussion care

[29:11 Andrew] The most important to me is that the patient has a fixed point of contact to which he can not only go in case of problem, but which serves to create a structured system where problems can be identified, and intervention can be given early on. To me that is the most important. And in current medical care that is lacking.

[29:50 Melanie] Yes.

Changing perspectives

[29:51 Andrew] And then it’s the doctor’s perception, recognizing that mild TBI is not so mild. And the patient’s perspective, recognizing that yes, there may be complaints, yes, that can take some time. But chances are high that they can get better or you can at least deal with them and return to as normal as possible life.

[30:20 Melanie] Yes.

The art of listening to patients

By means of closing this interview, I would like to quote you again, as well as one of my teachers – Thich Nhat Hanh. And you both described something so natural and so simple that is often overlooked, especially, I believe, in the medical field of brain injury.

So, in one interview with the Lancet, you said:

I once had a patient who said I changed her life. When all I had done was to listen to her troubles. It’s an art many of our colleagues are forgetting.

Thich Nhat Hanh

And Thich Nhat Hanh wrote:

Compassionate listening brings about healing. When no one listens to us, or understands us, we become like a bomb ready to explode. When someone listens to us compassionately, we feel some relief right away. Sometimes only 10 minutes of deep listening can transform us and bring back a smile to our lips.

I want to thank you for dedicating your experience and your valuable insight with the TBI community and for spending your time with us.

 [31:39 Andrew] Pleasure.

I’d love to hear from you

[31:42 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 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.