Table of contents:
[00:45] CENTER-TBI: Convention 2022
[03:53] Concussion research & facts
[06:20] Concussion rehabilitation is underutilized
[07:08] Mild TBI needs new specialists
[10:02] Most traumatic brain injuries are “mild” (concussions)
[11:53] Post-concussion protocols need to change
[13:05] Next episode: meeting the researchers
Introduction to this episode on mild traumatic brain injury
Mild traumatic brain injury (mTBI) is the medical term for a concussion and for post-concussion syndrome. The confusing thing is that concussions have been classified this way historically. However, new concussion research has found that it’s incorrect to call concussions “mild” brain injuries.
That’s why the CENTER-TBI research group makes a big issue of current post-concussion care and states that it needs to change. With this video, I want to show you that thought leaders, researchers and doctors have your back. You are not alone in this!
[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 Melanie] Hi, there. This video or mini documentary, if you will, is about the CENTER-TBI convention that took place on the 30th of September and the first of October 2022 in Antwerp, Belgium.
What is CENTER-TBI?
Now CENTER-TBI, as you may remember from one of the previous Concussion Stories episodes, is one of the largest research studies worldwide focusing on improving patient care for patients with TBI. And TBI is Traumatic Brain Injury.
Mild TBI is NOT mild
So, a concussion or post-concussion syndrome are labeled… I wanted to say: often labeled, but they are labeled as mild traumatic brain injury or mild TBI. But there is nothing mild about concussion, lingering concussions or post-concussion syndrome. And the research group, so CENTER-TBI, has also uncovered that. They have proven mild traumatic brain injury is not so mild. That’s something that you will hear in this video as well.
Now, the footage has been shot at a conference so that means that there will be a lot of background noise going on. So people coughing and sneezing and all that. If you’re sensitive to noise, please take this into account already and switch down your volume a bit.
Post-concussion syndrome support
The last thing that I want to say is why I made this video. So… I made this video as a vote of support to all of you out there with post-concussion syndrome. Because I want to show you that there are top researchers and doctors and thought leaders backing you.
It’s so important for you to know this. I know it won’t help you get the medical help that you so deserve, and you ought to get, I think, right now. But I hope it will instill in you a sense of positivity and acknowledgement, which is so important, and hope. So let’s see if that works and start the footage right now.
Concussion care is failing patients
[03:02 Melanie] The day started off with a statement that the current medical system is failing concussion patients. You’re going to hear “mild” traumatic brain injury a lot in the coming seconds. Remember that mild traumatic brain injury means concussions and mild does in no way represent the seriousness of your injury.
[03:25 Professor Maas] This patient is so illustrative of where we are failing patients. And also illustrative of the tremendous burden – I would say hidden burden – of mild TBI which exists in current day practice. So I’m very happy that Melanie is here, as one of the people who have taken initiative to help these types of patients.
Concussion research & facts
[03:53 Melanie] Emeritus Professor Maas then continued to share about the start of CENTER-TBI.
[04:00 Professor Maas] So the journey of CENTER-TBI. This is a picture which was made by Olli on occasion of our first CENTER-TBI meeting. Do you remember what this is? Anyone? Well David does, but that’s unfair. Something Japanese. Yes, sushi! No, not sushi. This is Kintsugi and Kintsugi is the art of mending broken pottery with gold.
Mild traumatic brain injury is not so mild
[04:40 Melanie] He then kicks in the door with important findings.
[04:44 Professor Maas] Mild TBI is not so mild. That is a major result of CENTER-TBI.
A CT scan for concussions doesn’t say anything
We found abnormalities on MRI scanning in about 1/3 of patients who have a normal CT on presentation. So, a normal CT does not mean the absence of structural damage. That’s important for patients, for science and also in the context of lawsuits, et cetera, where so often lawyers will say: “The CT was normal, so it was not a TBI.” Total nonsense.
Looking at the outcome, 51% of patients with mild TBI do not accomplish a full good recovery by six months after injury.
Gender and post-concussion syndrome
Gender affects: a hot topic. There has been much debate about it. I think we have now been able to clarify that. When you look at the moderate and severe TBI, we found no overall difference between males and females.
However, when you look at other domains, such as post-concussion symptoms, females have more complaints. We found that females with mild TBI were less likely to be admitted to the ICU. In mild TBI, we found poorer outcomes in females compared to males across all domains.
Concussion rehabilitation is underutilized
[06:20 Melanie] Professor Andelic states that rehabilitation isn’t always referred to – and certainly not to everyone.
[06:29 Professor Andelic] Rehabilitation is underutilized after TBI. Many patients report unmet rehabilitation needs.
Unequal access to rehabilitation care
Rehabilitation referrals are not only driven by clinical needs, but also by demographic, social and organizational factors raising issues regarding equity in rehabilitation care. So access to rehabilitation services should be improved.
Mild traumatic brain injury needs new specialists
[07:08 Melanie] Professor Stocchetti argues that we need a new specialization to take care of concussion patients.
Current brain specialists are not specialized in mTBI
[07:16 Professor Stocchetti] My view is that I don’t believe that people can be an expert in everything. I hate people who claim to be good at everything. It would be a waste to say: “Okay, now we self-claim that we are good for mild traumatic brain injury.” I am not. The question is: who is the best entitled specialist for the mild and moderate traumatic brain injuries? This is what I don’t know. And I’m afraid that it doesn’t exist yet.
Concussion awareness is needed
[07:46 Melanie] Then, Professor Menon and Emeritus Professor Maas highlight a needed change in healthcare and policy.
[07:53 Professor Menon] We have a duty to them.
[07:55 Professor Maas] I fully agree, David. I think you’ve hit the nail on the head. We can do no more as intensivists or surgeons, then create awareness for the larger population of mild TBI. We have come to recognize the importance of that. We had not recognized it. The community has not recognized it. The Ministries of Health have not recognized it.
So now that we have recognized it… We have learned the hard way, but now it’s up to us to make the community and policymakers aware of this problem and aware that it is a huge public health burden.
Mild traumatic brain injury needs to be overemphasized
[08:45 Melanie] Associate Professor Majdan reasons that the medical system should start overemphasizing mild traumatic brain injuries, so concussions.
[08:54 Professor Majdan] Here’s another way of looking at it. I’m not saying that we should put aside severe TBI or moderate TBI, but we should be over emphasizing and making mild TBI the priority or the most visible part.
“Your post-concussion symptoms are psychosomatic”
[09:10 Melanie] Professor Tenovuo pitches in to advocate for all of us with post-concussion syndrome.
[09:18 Professor Tenovuo] There are hundreds of millions of people with problems caused by so-called “mild” TBI. And when they seek medical care, they hear that: “Maybe you have depression,” or “Your symptoms are psychosomatic,” or “There should be nothing wrong with you”.
We need to help mild TBI patients
So we hear these stories all the time. And Andrew mentioned the story of Melanie, for example. It’s a shame for the medical community that these patients have to look for the cure by themselves. They don’t get any help from the medical community. That’s something we should do something about.
Most traumatic brain injuries are “mild” (concussions)
[10:02 Melanie] As the question was raised if specialists treating people with severe and moderate TBIs were losing work because of this, I felt the need to pitch in.
“Is there no more work for us, neurosurgeons and intensivists?”
[10:11 Professor Menon] So I think the question was that many of us who embarked on the CENTER-TBI journey take care of patients at the most severe end of the spectrum.
And with the concentration of mild TBI, the question was being asked: “Does this mean that there is no more work to be done at the more severe end of the spectrum?”. And I think all of us recognize this and we are having these discussions to clarify this.
Doctors couldn’t help me recover from concussion
[10:32 Melanie] Thank you for clarifying. So from the doctor’s perspective, I understand that you ask this question. From a patient’s perspective, I have experienced having no doctor to go to. I had doctors to go to of course but they had, honestly, nothing to offer to help me. And hopefully, I just went to the wrong doctors. I must believe that, being here.
Mild TBI requires its own specialization
But if from the data that it emerges, or it appears that, or actually… It’s proven that mild traumatic brain injury is the most common form of traumatic brain injury. And it has such a massive impact on society: economically, but also, so many other aspects.
Maybe this would open the discussion, or in my perspective – humble opinion – should open the discussion if there should be a new specialist kind of doctor, specialization, needed in order to service these patients. It’s just a question that comes into my mind, coming from where I’ve been, and also what I’m hearing now.
Post-concussion protocols need to change
[11:53 Melanie] I also wanted to press the importance of translating research findings into new protocols.
Changing concussion patients’ lives
[12:00 Melanie] The thing I’m missing as a patient or former patient, is protocols. That’s the exact point where you can make a direct difference in people’s lives. And of course, we are getting there.
Using CENTER-TBI findings to change protocols
All of the research you have been doing and are still doing, I am so thankful for it, and it’s so important. For example, the realization that mild traumatic brain injury is not so mild. It has been healing for me to hear Andrew say that after everything I’ve been through, because I never got the acknowledgement. So that’s something I’m sharing now with other patients as well.
But if we could – from all of these findings that you have found and you have put so much time and energy in – if we could direct all of that toward the impact of changing protocols, and having GP’s, for example, knowing what to do with traumatic brain injury, that will be massive.
Next episode: meeting the researchers
[13:05 Melanie] And then, there were some seahorses. We had dinner in the aquarium of the Antwerp zoo.
[13:23 Melanie] Thank you for watching or listening to this Concussion Stories episode. In the next episode, we will be meeting some of the researchers. I wanted to show you the faces and the stories behind the people who are doing the research. So that’s on the agenda. Thank you again for tuning in.
Penny for your thoughts?
[13:43 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. 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.
Thank you for listening to this Concussion Stories episode by Lifeyana. May you be well and may you be happy.