‘Post-concussion symptoms’. Professor Tenovuo states that this is the better way to name the range of lingering concussion symptoms that many of us experience after sustaining a concussion. He shares how the term ‘post-concussion syndrome’ confuses patients and doctors alike. Wanting to provide better concussion care, he advocates for a change of terminology.
Table of contents:
Concussion Stories podcast introduction
[00:00 Melanie] If I say there is hope for complete recovery for people with a concussion, you say…?
[00:07 Professor McCrea] 100%!
[00:08 Professor Maas] And in fact, you didn’t only feel it] you were outside the regular medical system, because they were not interested in you.
[00:16 Professor Sitskoorn] Neuroplasticity actually opens you up to the world. It makes it possible to develop; it makes it possible to rehabilitate.
[00:25 Professor Wilson] Traumatic brain injury has been called a silent epidemic for that reason, because it consists of changes and disabilities that are not obvious to other people.
[00:35 Dr. Zasler] If, as a physician, you felt you had nothing to offer a patient, then I think ethically, you need to say] “I don’t think there’s anything I can offer you. Maybe you should see Dr. M.”
[00:48 Professor Diaz-Arrastia] Historically, we have called these things mild traumatic brain injuries, which implies that, well… It may be a brain injury, but it’s not going to have great consequences, right? And that’s frankly not true.
About the Concussion Stories podcast
[01:05 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 post-concussion recovery journey. My name is Melanie and I spent six and a half years learning, experimenting, and training in order to find a way to heal myself from post-concussion syndrome.
After making a full recovery by the end of 2018, I embarked on this mission to make the recovery journey easier for you. This is why I started this podcast, wrote detailed blog post and downloadable guides, offer coaching and also the course that I wish I had back when I was recovering — teaching you everything that I needed to know in order to make my recovery happen.
On Concussion Stories, we dig deep while discussing hopeful stories of recovery as well as the hard stuff in the messy middle. Let’s dive right in!
I am so happy to announce the first expert of this season. His name is Olli Tenovuo and he is a professor of neuro-traumatology at the University of Turku in Finland. He is part of CENTER-TBI, the large research group in Europe, researching traumatic brain injury (TBI) and advocating for better concussion care. Remember, traumatic brain injury is the medical word that doctors use for all sorts of injury, including concussion. But let me tell you how I got to know Professor Tenovuo.
The first time I heard him speak, was in a big room filled with doctors and researchers. He defended all of us who experience lingering symptoms after a concussion, stating how doctors essentially ignore us and tell us to our faces that we are imagining symptoms. He’s been wearing a superhero suit in my mind since that moment.
Trigger warning: post-concussion symptoms
I want to give you a heads up beforehand. In this episode, Professor Tenovuo says that there is no such thing as post-concussion syndrome, because all patients have different post-concussion symptoms and, therefore, we cannot speak of one syndrome that everyone has.
However, this may be triggering for you. As I know, it would have been for me. To hear that what you believe you suffer from may not exist. Your post-concussion symptoms do exist and still fall within the diagnosis that would now be called post-concussion syndrome.
What Professor Tenovuo is referring to, is the fact that a group of researchers and doctors worldwide are looking for a better definition of post-concussion symptoms. The first change they aim to make is about the wording, helping doctors better understand what all of us experience, and from there, improve patient care.
You are in the right place right now. And Professor Tenovuo and I are here to help you move forward. He’s rooting for us and truly understands the frustrations and struggles most of us go through with regard to the medical system. Having said that, let’s start with the first out of no less than four episodes with Professor Tenovuo.
Professor Tenovuo’s passion
Thank you again for doing this recording, this podcast episode with me, because after our meeting at the CENTER-TBI, I really felt that you spoke up for post-concussion syndrome patients when you took the mic. I don’t know if you remember?
[04:42 Professor Tenovuo] Yeah, I do remember.
[04:43 Melanie] I want to ask you about that, but maybe I can start with a more general question first, so that listeners can get to know you a bit. Outside of work, what are things that bring you joy?
[05:05 Professor Tenovuo] Oh, that’s an easy question. I have been an eager birdwatcher since I was 15 in the 70s. When I have free time, I always go birdwatching at my summer house by the Baltic Sea. I like to go with my boat to small islands on the sea where it is easy to find birds and to see them nearby. I also do photography, that is my passion.
[05:49 Melanie] And do you then sometimes share your pictures with colleagues, or is it something that you do outside of work and nobody ever gets to see your pictures?
[05:57 Professor Tenovuo] Well, my birdwatcher colleagues see them. We share our photos on Facebook.
[06:09 Melanie] So you have special birdwatcher colleagues!
[06:15 Professor Tenovuo] I think all birdwatchers around the world are colleagues in a way.
[06:20 Melanie] Possibly friends too, right? Because you share the same passion?
[06:25 Professor Tenovuo] Yeah, sure.
[06:26 Melanie] I understand. Circling back to the CENTER-TBI conference, I really got the idea that you understand what post-concussion syndrome patients are going through. You spoke about their symptoms, but especially about what they hear from doctors in the medical system when those patients consult them. Could you share a bit about what you have learned?
[07:04 Professor Tenovuo] Yeah, of course. The whole concept of post-concussion syndrome is a problem because actually, there is not such a syndrome. With a syndrome, you mean a specific constellation of symptoms. Although many patients share similar post-concussion symptoms, they are always individual, so there is a great variety of different symptoms. However, you often hear the term post-concussion syndrome. Actually, you should speak about post-concussion symptoms.
There is no concussion definition
Using the word ‘concussion’ is a problem, too. That is because there is no accurate definition for concussion. This also means that if a patient is diagnosed with concussion, doctors think that there should be no major consequences to this kind of injury. And if there are consequences, they must come from something else, like depression, post-traumatic stress, psychosomatic causes, litigation, or anything else.
Brain injury classification is misleading
The other side of the problem is that it is very difficult to accurately define the true severity of the injury. This is one reason we try to get rid of the definitions of mild, moderate, and severe traumatic brain injury. This categorization is based on obscure grounds, and it often has a lot of confounders assessing the severity. These labels are often very misleading, and they actually cause patients more often harm than benefit.
[09:26 Melanie] Yes, well-spoken. This is about the summary of my experience with the medical system.
[09:34 Professor Tenovuo] You are not the only one.
[09:36 Melanie] No, I know. And I am laughing now, but of course it isn’t funny at all. It’s clarifying how you explain the trouble with these concepts. All of us in society, but also doctors, have concepts in their minds about what something is or isn’t, and what the results of that can be.
Mild TBI needs to be taken seriously
You co-wrote a paper stating that we should revise mild, moderate and severe traumatic brain injuries as categories. The biggest problem, of course, is that this categorization suggests that a ‘mild’ brain injury isn’t to be taken seriously, and that it doesn’t have long-term effects. However, CENTER-TBI has uncovered that over 50% of people who visit the ER have post-concussion symptoms over six months after sustaining a concussion.
Now, I understand what you’re saying about concussion and post-concussion syndrome actually not being helpful words to use, because we have the wrong ideas about it. But, of course, we have to work with them as long as we haven’t developed new words.
[11:05 Professor Tenovuo] Yeah, we, in a way, base our classifications, our treatments and the pathway of care on these kinds of uncertain and often misleading labels. I hate that.
[11:26 Melanie] I agree with you!
MRI and CT often can’t diagnose concussion
I feel that with brain injuries, especially micro injuries that we can’t see on CTs and we sometimes start to be able to see in blood or on very good MRI scans, only now we are starting to uncover what is a concussion, really. And maybe it will need a new word, indeed. But concussion was something that we couldn’t see before.
Identifiers such as having amnesia, or having a brain bleed, were shaped by doctors who were working with things they could see. Only now are we uncovering that concussion is much more subtle, but the effects can be major.
Diffuse axonal injury is microscopic
[13:10 Professor Tenovuo] Yeah. There is an old saying: what you can’t see, doesn’t exist. You can recognize that in many issues in our lives. But yes, you can very often still see the attitude: “Head MRI is normal, so there is no major problem with you. Everything should be okay.”
However, we know that a diffuse axonal injury is by far the most common mechanism of brain injury. And this always happens at the microscopic level. So, in principle, conventional MRI is unable to show it. It is fully unable to show it.
Recovery potential after severe brain injury
On the other hand, we also see patients who have fairly large contusions, so large injured areas in the brain, and they may have a full recovery. That is another side of the coin: you may have fairly large focal lesions in your brain and recover well if your brain network is spared.
Better concussion diagnosis tools
[14:41 Melanie] So, new tools are needed in order to assess post-concussion symptoms and diagnose people with concussion or mild traumatic brain injury. I now feel like I shouldn’t say concussion, because of your thesis, but we still need the words for people to understand.
[15:04 Professor Tenovuo] I forgive you.
[15:11 Melanie] We need better tools.
Practitioner awareness & concussion protocols
But mostly I feel that whatever tool there will be in three, four or five years from now (I don’t know how slow or faster we will go), the first thing we need is awareness on the caretaker’s side. So, GPs or practitioners in the ER – people who first encounter patients with a concussion – need to know that if patients complain about fogginess, or ringing in their ears, or headache, or blurry vision or anything, they need to take it seriously.
This might be a brain injury, and just describing the symptoms is enough to start a new protocol that we so desperately need. They especially need to start communicating with patients: “This is a serious thing. You need not only rest, but you need other things as well in order to recover.”
Penny for your thoughts?
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.