Concussion diagnosis (and why you feel discarded by doctors)

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Concussion diagnosis

The moment of concussion diagnosis is when most of us start to feel that the medical system doesn’t have a place for us. Even though doctors have listened to your symptoms and ascribed them to a concussion, you don’t feel helped at all.

You left many a doctor’s office with the same post-concussion symptoms, but feeling even more confused and lost than before you came in. And the absence of hard proof of brain damage may have even made the doctor falsely assume that there is no physical reason for you to feel unwell. It feels like this concussion diagnosis is more of a curse than that it’s helping you.

In this post, I am going to walk you through all current and new concussion diagnosis tools and how they explain why you don’t feel helped by the medical system. Also, I’m going to give you tools to move forward with your post-concussion recovery yourself!

Table of contents:
How to diagnose a concussion?
New cutting-edge concussion tests
Still no concussion diagnosis, what now?

How to diagnose a concussion?

How to diagnose a concussion

How to diagnose a concussion? That’s the question. It appears that concussion diagnosis is very tricky. The tests that are used today to assess (the severity of) your concussion are very limited.

1. Cognitive tests

Doctors may have run down a list of questions with you about your injury and symptoms. For example, they may have asked you if you can recall what happened before the injury or if you’re having changes in your mood or sleeping. 

The doctor probably also checked your neurological and cognitive function by examining your senses, coordination, reflexes, concentration and memory.  

CENTER-TBI: cognitive tests are insufficient

The detective power of these cognitive tests can be really small when it comes to concussions. CENTER-TBI is a large research group focusing on improving the care for patients with TBI, which means traumatic brain injury. A “concussion” is a label for a set of signs of mild traumatic brain injury (mTBI).

CENTER-TBI research on these tests has shown that two weeks after injury, mTBI patients score similar to people without TBI! That’s despite the fact that mTBI may very well cause cognitive impairments. 

2. Grading traumatic brain injury

When you are diagnosed, the doctor may have also used a grading scale to measure the severity of your traumatic brain injury. An example is the Glasgow Coma Score. This scale assigns points to verbal, eye opening and motor responses. 

Eye opening response

  • Spontaneous – open with blinking at baseline: 4 points
  • To verbal stimuli, command, speech: 3 points
  • To pain only (not applied to face): 2 points
  • No response: 1 point

Verbal response

  • Oriented – 5 points
  • Confused conversation, but able to answer questions: 4 points
  • Inappropriate words: 3 points
  • Incomprehensible speech: 2 points
  • No response: 1 point

Motor response

  • Obeys commands for movement: 6 points
  • Purposeful movement to painful stimulus: 5 points
  • Withdraws in response to pain: 4 points
  • Flexion in response to pain (decorticate posturing): 3 points
  • Extension response in response to pain (decerebrate posturing): 2 points
  • No response: 1 point

Based on those points, a traumatic brain injury is considered mild (14–15), moderate (9–13) or severe (3–8).

Also, when possible post-traumatic amnesia continues for more than 24 hours and someone is unconscious for more than 30 minutes, the traumatic brain injury is no longer considered “mild.”

3. CT and MRI scans for concussions

As you might recall from my previous blog post about concussions and CT scans, brain scans can be performed depending on what symptoms you have. They may be done for example in case you have to vomit, experience post-traumatic amnesia or have speech, vision or hearing problems.

Microscopic brain damage remains invisible

Imaging techniques such as CT and MRI can show bleeding and bruises in the brain. Usually, CT is used for diagnostic imaging after someone sustains a concussion. However, they cannot visualize damage on a smaller scale, making them of less diagnostic value for concussion. CT scans are more useful for diagnosing moderate or severe traumatic brain injury. 

CENTER-TBI: new concussion tests are needed

This has been one of many important findings of the research of Emeritus Professor Andrew Maas and his colleagues at CENTER-TBI. And since around 90% of TBI cases are mild, new ways of concussion testing are absolutely necessary to help diagnose concussion survivors.

Better concussion tests are being researched

All of the above emphasizes the need for better diagnostic tests because there is no simple and foolproof concussion test yet. And doctors and scientists are starting to realize the importance of this. Which explains why you may very well feel discarded by medical professionals. 

Since research on new and better concussion tests is ongoing, the protocols aren’t changing yet. Until findings have been forged into protocols and these are accepted by the medical community, many doctors basically don’t know what to do with and for you. But you can already learn about the possibilities yourself!

New cutting-edge concussion tests

New cutting-edge concussion tests

In a previous Concussion Stories podcast episode, we have already established that current medical care is lacking. The current concussion assessments do not suffice and there is a lot of room for improvement. Ideally, everyone would know exactly what’s wrong with them and nobody would leave the doctors’ office with the feeling that they are not taken seriously. 

Luckily, new post-concussion syndrome assessments are on their way to make a more straightforward diagnosis and you can already learn about them and see if they could benefit you. Let’s take a look at the most promising ones. 

Two types of diagnosis

Looking at new cutting-edge concussion tests, there are two groups. The first group makes a diagnosis by means of a scan or test showing brain injury. The second group makes a diagnosis based on your signs and symptoms. 

Biomarkers: a blood test for concussions

One of the potential new concussion tests is a blood test. For this, a blood sample will be taken and tested to see whether so-called biomarkers for concussion are present. 

They can not only help diagnose a concussion, but can also help predict the development of the injury (impact). 

When brain cells are damaged and inflamed, they release a set of molecules when they reach the bloodstream. Certain molecules are indicative for a certain condition or disease and scientists can measure these molecules in your blood. 

Post-concussion syndrome and treatments

The presence of those molecules can not only help diagnose concussions, but possibly also tell us something about how your concussion will develop. For example: are you likely to develop post-concussion syndrome? Moreover, it might also tell us how well certain treatments may or may not work. 

Though such blood test need to be developed further to enable concussion diagnosis, several potential biomarkers have already been identified

MRI scans instead of CT for concussions

MRI can map smaller injuries in the brain compared to the conventional CT scan. At the moment, MRI doesn’t really have a place in mTBI diagnosis. 

New MRI techniques are being developed to visualize even small lesions and diffuse axonal injury, making it a more promising technique for imaging mTBI. One example is the diffusion tensor imaging MRI method

Genetic tests for concussion outcome

The field of genetics has made tremendous advances in the last two decades. New techniques enable us to read the DNA much faster. 

This is useful because disease outcomes can be predicted by variations in the DNA. 

For example, some gene variants possibly can predict difficulties in cognitive functioning after a concussion. And genetic research can pinpoint variations such as these. 

Diagnosis based on signs and symptoms

Then there is the second group of new concussion diagnosis tools. This diagnosis wouldn’t require any technology, because it is based on the signs and symptoms that patients describe. 

This would require medical professionals to have a way to rate and interpret these experiences and the CENTER-TBI research group has created very detailed questionnaires for this. They have made sure they are already available in all languages of the EU (including English).

Concussion diagnosis by questionnaire

These questionnaires help diagnose a concussion and help better assess concussion outcomes. That means they help a doctor predict whether or not a patient is going to suffer from post-concussion syndrome, for example.

The way these questionnaires help doctors make their diagnosis is that they include questions about anxiety, depression, cognitive ability and how you perceive the quality of your life. In our Concussion Stories podcast interview with Andrew Maas, he shares more about these questionnaires. 

Symptoms are markers for diagnosis

You and I don’t have to think about how valuable such a diagnosis tool would be! When these questionnaires are integrated into protocols and doctors start using them, symptoms we perceive suddenly are diagnostic criteria that have to be followed up on.

Still no concussion diagnosis, what now?

Still no concussion diagnosis

So there’s some promising research on new and better diagnostic tools for post-concussion syndrome tests. This, however, doesn’t help you in the present, not yet. 

The reality is that you may have visited the doctor and left empty handed, without a ‘proper’ diagnosis. Please remember you can trust yourself: you know when something is off. 

Also know that we are here to help you move forward with your recovery. We know your struggles and we certainly don’t need a straightforward diagnosis to acknowledge that you have a concussion or post-concussion syndrome. 

Have a look at this free guide to help you recover faster than I did and make sure to subscribe to the Lifeyana email list: we will send you updates and materials to support you every Friday. You can also check out this page to get you started.

And now I’d like to hear from you. 

What do you recall from visiting the doctor after your concussion? Did you come home without a proper diagnosis or treatment, just like the majority of post-concussion syndrome patients? I would like to hear your story: leave your comment below. 

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