Table of contents: [00:45] CENTER-TBI convention 2022 [02:58] CENTER-TBI [05:15] 90% of traumatic brain injuries are “mild” [07:24] Concussions are not “mild” brain injuries [08:29] Concussion doctors are needed [09:24] TBI care differs per hospital [12:17] Concussion protocols need to change [14:13] Post-concussion treatment vision is lacking [15:42] The best post-concussion treatment
Introduction to this episode on CENTER-TBI
CENTER-TBI is one of the largest research projects studying traumatic brain injuries (TBI) worldwide. Concussions and post-concussion syndrome are TBIs, so that is why their work is so interesting for us.
This is the 3rd of 3 episodes covering the CENTER-TBI convention that took place on September the 30th and October the 1st of 2022 in Antwerp, Belgium. I am grateful to have been invited to join the brain injury researchers and to relay all I heard and experienced to you.
[00:00 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.
CENTER-TBI convention 2022
[00:45] Hi! Welcome to the third, and last, Concussion Stories episode covering the CENTER-TBI convention of September the 30th and October the 1st of 2022.
Episode 1 and 2
If you haven’t watched them, or listened to them yet, I advise you to head on over to the first 2 episodes (episode 1 is about mild traumatic brain injuries needing researchers’ full attention and episode 2 is about the researchers behind traumatic brain injury research) covering the CENTER-TBI convention, because those cover footage from the convention itself and it will give you an idea of everything that happened.
Recovering from post-concussion syndrome
This episode is my report of the convention. Why might this be interesting for you? It could be that you have visited doctors who weren’t able to help you recover until now, or you have visited doctors who were able to help you, but you haven’t achieved full recovery yet. And what typically happens to a lot of us, in the meantime, is that we are lost in a system: how do you get back to your normal energy, your normal self, and your dreams?
Cutting-edge concussion research
I try to bridge that by bringing you the newest scientific findings, so that you have access to facts and so that you don’t have to feel as alone as I did in everything you experience.
People are working to help you, even though it doesn’t reach you right away, today, in the doctor’s office, it’s still out there. That’s what I want to bring to you. In this episode, I combine everything that was said and shared at the convention with my experiences, so that it may almost feel like you were there with me.
TBI means traumatic brain injury
Before we get started, let’s first make sure that all abbreviations and difficult words you just heard are clear to everyone. It will just be short, but I want to make sure. In the name CENTER-TBI, you hear TBI. This means: traumatic brain injury. Concussions and post-concussion syndrome are brain injuries.
CENTER-TBI is one of the largest studies worldwide focusing on studying concussions and post-concussion syndrome, along with other brain injuries. That’s the context, it will help you understand everything that will be covered in this episode.
[02:58] So, what is CENTER-TBI exactly? For over 8 years, 175 researchers worked on studying traumatic brain injuries. And that’s just in the EU. Because CENTER-TBI formed part of a collaboration between funding agencies in the US, Canada and the EU. And that’s why CENTER-TBI has a sister project in the US and Canada, called TRACK-TBI.
What’s pretty cool is that they both work on similar research questions. And the thing is: if they both find similar things on different things, suddenly there is a massive body of evidence ready to change the perception about concussions and post-concussion syndrome and the way we as patients receive care.
You know the thing I really liked about CENTER-TBI? At the start, their leadership set out on a course of ego-destruction. You know, because specialists are known for their humongous egos, right? The conviction was, and I fully agree, that the field of traumatic brain injury is long overdue for a transformation, and you can’t transform a field filled with dogmas, sacred cows, and egos. Amen to that.
The wonderful thing is that, because of this selection of those who were willing to let their egos sail away, a really warm, informal, enthusiastic and passionate group of humans welcomed me to their convention.
Changing post-concussion care
It really took all I got to not stand their flabbergasted, but really listen to these researchers’ stories when they came to share them with me, because I was taken aback by the stark contrast of the specialists that I had met during my recovery and the ones I was now speaking to. The words that come to mind are: compassion. Understanding. Recognition. I heard people owning mistakes. And most of all, an unrelentless willingness to change the post-concussion care that can no longer be.
90% of traumatic brain injuries are “mild”
[05:15] One of the most important findings of CENTER-TBI has been that mild TBI, so concussions and post-concussion syndrome, are not mild. Another very important fact they uncovered is that 90% of all traumatic brain injuries are so-called “mild”. And at the convention, this was a critical point. Why was that?
Severe traumatic brain injuries got all attention
Well, historically, the more severe traumatic brain injury cases – such as patients entering the ER with a brain bleed for example – were seen as… yeah, the ones that deserved all the attention. Those were the patients who needed to be operated on, their lives were at stake – and yes, that work was and always will be extremely important.
Milder brain injuries were less “serious”
But… this unconsciously warped the common vision in such a way that milder brain injuries, being concussions, were overlooked. The how and why of this situation is a research topic in itself, so let’s focus on the fact that concussions were not being taken seriously since they were – from a specialists’ point of view – not that serious.
“We are failing patients”
Like with many things in history, this is a painful awakening – and the CENTER-TBI researchers fully acknowledge this. In his opening statement, Andrew Maas, one of the project coordinators of CENTER-TBI, directly stated that the medical community is failing concussion patients. And that was just one of many more of such statements.
Mild traumatic brain injury needs most focus
So, at the convention, researchers made the case to shift most of their focus to concussions and post-concussion syndrome from now on. They said things that reflect our own experiences, like: patients are being told that there is nothing wrong with them, that their symptoms are psychosomatic and that they have to live with it. That can’t be! This has to change.
Concussions are not “mild” brain injuries
[07:24] One other thing I noticed, during and after the convention, is that traditionally, concussions have been labeled as “mild” traumatic brain injuries – as being different from moderate and severe traumatic brain injuries.
But, as I just mentioned already, CENTER-TBI uncovered that “mild” traumatic brain injuries are not that mild. A lot of researchers – such as Dr. Diaz Arrastia and Dr. Zasler from the US as well as Prof. Tenovuo from Finland, whom you can listen to in other Concussion Stories episodes – want this TBI categorization gone as it is misleading on all fronts.
Since CENTER-TBI has now unmistakably proven that concussions and post-concussion syndrome are not so mild (we already knew it, but now everybody knows it), this finding is the start of the much needed realization and change by doctors, policy makers, lawyers and society.
Concussion doctors are needed
[08:29] One thing that also became apparent during the convention, is that there is a need for specialized concussion doctors. Of course, there are some around the world who have seen this need and who have specialized by experience.
Globally, there needs to be consistent post-concussion care by neurologists and other specialists who know everything about concussions and post-concussion syndrome.
Current specialists are no concussion specialists
As one of the intensivists present openly acknowledged – which I found very courageous – that he is not suitable to treat traumatic brain injury patients who don’t have injuries that need operation, he asked: who is suitable? I don’t know. If I have something to say about it, this is a specialization that needs to be developed in practice, and that was also the point that he was trying to make.
TBI care differs per hospital
[09:24] One finding that really left me astonished, but honestly, in hindsight, I should have known based on my own and a lot of your experiences, is that it really matters which hospital you choose to visit. This of course influences the outcome of your recovery path, but also determines the outcome of your treatment there.
Treatment outcomes vary heavily
One of the facts researched and found was that the chance to die – I’m not trying to scare you here, it’s just one of the things I heard and I want to make a point – in case of a severe brain injury, can be as much as 3 times higher depending on the hospital one visits. That’s of course an extreme example, but it shows one very important point that I learned the hard way.
Doctors are people, and all people are fallible. It is so important to go through all the motions, check everything you can check, and follow your doctor’s advice when it sounds logical, or when you’re in a situation you simply need to trust them.
Your own team of concussion specialists
However, when you feel that a doctor is working against you – like when they are telling you that you have to learn to live with symptoms while your gut is telling you there just needs to be another way – go and look for it. Always follow your gut.
Be your own best doctor. This is the one lesson that I paid dearly for with years of my life. Compile your own team of specialists that can help you, whether you meet them in real life or learn from them through books, podcasts, research papers, magazine articles, documentaries: you name it. This is the age of information – and if it’s too much for you to go search for it all, I’m always here to help you.
Tons of resources for you
Know that I already did all of this for us, and through my interviews with people on Concussion Stories, all of this information is available to you, too. There is no need for you to reinvent the wheel. Just head on over to the concussion resources page, to the post-concussion blog, to the Concussion Stories podcast page: anywhere you want to go on the Lifeyana website and collect whatever you need right now.
Driven to improve traumatic brain injury care
These are the things that really spoke to me during the convention. I believe I just mentioned it already, but I just want to point it out again: the thing that spoke to me most was the kindness and the warmheartedness of people. They were all so driven to help patients with traumatic brain injuries get better care. It was wonderful to be there and I was so grateful to have been invited, and having been a part of those two days with them.
Concussion protocols need to change
[12:17] There have been two things I missed during the convention. The first thing I missed, I already addressed at the end of the first Concussion Stories episode covering the CENTER-TBI convention – so 2 episodes ago.
Future brain injury research
The pillars on which future research coming from CENTER-TBI will be based, are prevention or traumatic brain injury, personalized categorization of patients, precision treatments and prognosis. You can take it from me: these are very important things.
Translating research findings to new protocols
However, the thing that I missed is: who is going to translate all of these super important findings that CENTER-TBI has found into protocols?
The thing that I learned after going to this convention, and being in touch with some of the researchers afterward, is that these researchers have done a lot in order to get all of these facts about traumatic brain injury on the table. They continue doing research in order to get even more facts, figures, anything on the table.
Who will change post-concussion care?
But a researcher is a researcher. It is not their job to translate all of these findings into practice. But my question is: who then? Whose job is this? In my opinion, we need to change the care that all of us with concussion and post-concussion syndrome are getting yesterday. Not today: yesterday. The day before even.
What I also learned later, is that recently, a specialized field called “knowledge transfer” or “implementation science” has developed. This has as its goal to translate research findings into practice. However, it can be quite hard for research groups – alongside moving mountains while doing research – to get this moving.
So, since the convention I have a new, secondary mission – I’ll get back to it later 🙂
Post-concussion treatment vision is lacking
[14:13] The second thing that I realized I had missed during the conference, only after it was finished, was a full spectrum approach to treating concussions and post-concussion syndrome – like I applied for my recovery – was missing.
Referring patients to different care providers
I learned that some countries are way ahead of others when it comes to recognizing and having plans on how to help concussion and post-concussion patients. However, the countries that are most advanced in this, as I understood, are focusing on referring patients to existing care providers such as physiotherapists, psychologists, and so on.
Yes, this is so much better than what most of us get or got. I acknowledge that. But. What I missed is the complete package of concussion care that can help cure so many patients right now.
Brain training and lifestyle changes
What I believe post-concussion care should entail is everything medical that CENTER-TBI is already researching, plus the whole range of training and lifestyle changes that isn’t covered with biomarkers or future medicine and that is such an crucial part of post-concussion recovery.
The best post-concussion treatment
[15:42] What I am talking about is a treatment that makes sure that your primal needs are well taken care of, so that your body is in the state that recovery is possible from.
What’s also needed is resilience training and rehabilitation tools, in order to keep you going when recovery gets hard, which it always does.
Specific dietary changes to feed your body and your brain the building blocks they need to heal. Provide your body and brain with the right physical exercise, at the right intervals, followed by the right breaks.
Learn how to help your body and mind get out of the constant state of stress and how to respond to chronic pain.
And last but not least: your brain needs training focused on the functions that you have lost or that have diminished since you sustained your concussion.
This is how I cured my concussion
That’s a lot right? I know. But these are the most important, but not all, elements that I applied to finally and fully recover from my concussion after 6,5 years of post-concussion syndrome.
As long as this care can’t be found in the conventional medical system, you can find it in the Cure My Concussion course. It contains everything that I have spent years learning in downloadable lessons, so you don’t need to watch a screen, and it includes 1 free coaching session to help you tailor the materials to your situation.
My secondary mission I talked about before? I truly hope that the Cure My Concussion course becomes obsolete, because everybody gets the full package of care that they ought to get.
Improving concussion care
So, those are 2 things that I missed during the convention. It doesn’t mean that the researchers aren’t doing their jobs. They have done a great job: everything that they have found is so meaningful to us. And I will also use this to help change the system. I will do my best, in whatever humble way I can, to make sure that all of you who sustained your concussions after me will get better care.
[17:31] All in all, I am thankful to the CENTER-TBI coordinators to invite me and to be able to relay all of this information to you. It was wonderful meeting so many passionate researchers, dedicated to changing the way concussion and post-concussion syndrome patients are being treated.
As a closing note, I understand that this has been a lot and that it may also raise questions in your mind. If you want, you can always drop questions below this video or in the comment section on the Lifeyana website – lifeyana.com – and I will be happy to answer them or to ask one of the researchers to answer them for you.
What do you think?
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. Or you can leave it below this video.
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.