We are deep in the throws of football season again! With so much focus placed on the tragic plight former NFL players losing their memory skills, doctors all around the country are noticing a rising anxiety around concussions. On many levels this fear has spurred important and positive changes in how athletes, and others, care for their brains. Changes in sports rules, better concussion management and improved return to play procedures demonstrate an incredibly beneficial result of the intense focus on brain injuries.
However, in my clinical practice, we are also seeing a downside of this intense media focus on concussions. The result is a neuropsychological condition called post-concussion syndrome (PCS) that is severely limiting the lives of far too many patients. Before I explain what PCS is, let me first emphasize that PCS is treatable, and the caring providers at CCCW work hard to restore hope to our patients with this condition.
The reality is that we are not all NFL players. One, two, or in many cases even three concussions is not the same as what these former NFL players are experiencing. Chances are your concussion(s) will not cause you will develop the condition we are all so worried about chronic traumatic encephalopathy (CTE), originally described in pro boxers and formerly called dementia pugilistica.
It is important to note the state of the science for CTE is currently only at the “case study level.” That means the science is in its earliest stages. Scientists, primarily those at Boston University, have collected brain tissue from former athletes (most of the NFL players who donated their brain). The brain donors had repeated concussions in their lifetimes, and the scientist have identified the characteristic tau tangles associated with CTE. Tau tangles are not unique to CTE. It’s likely you’ve heard of them before. They (along with beta-amyloid) are one of the two hallmark pathologies linked to Alzheimer’s disease; therefore, we are not entirely sure yet if CTE is even distinct from Alzheimer’s disease. We also do not know yet that CTE is progressive on its own. It may very well be the case that the multiple concussions and tau tangles deplete cognitive reserve and therefore accelerate the declines that would have resulted anyway (just later in life) from normal aging or Alzheimer’s disease.
We also do not have any longitudinal evidence that would allow us to characterize a “syndrome” associated with CTE. Therefore, symptoms like memory loss, irritability, depression, substance abuse, rage and the numerous other behaviors that have been liked by the media to CTE cannot be reliably linked to CTE for two reasons:
1. Those behaviors are prevalent in many other disorders (such as run of the mill depression, personality disorders, addiction, etc.), and
2. To establish a syndrome, numerous cases need to be followed over time and shown, through statistics, that CTE and not something else caused the behaviors. Efforts to conduct those types of studies are under way, but for now the jury is still out.
The important thing to remember about concussion and more severe brain injuries is that long term trajectory of cognitive skills and functioning is UP, not down.
The early days of a concussion or TBI are terrible! Managing symptoms in those early days is crucial, and it can be incredibly challenging to do what you need to do to manage a concussion effectively. This is especially true given our hard-driven, device viewin’, no relaxin’ society. With the exception of the most severe cases of brain injury resulting in a persisted vegetative state, the long-term course of a brain injury recovery is continued improvement over time. The largest recovery does tend to happen in the first year, but there are many cases of continued improvement over the long term.
In cases where a person is doing worse at the 1-year mark than he or she did at the onset, doctors are going to look for other factors. It is possible that the brain injury lowered cognitive reserve enough to trigger the onset of dementia that, due to some other progressive condition such as Alzheimer’s pathology happening in the background, does get progressively gets worse. However, unless the person is over 65, this is highly unusual. It most cases the cause of the continued decline is most likely linked to mood, anxiety and beliefs, or other ongoing physical symptoms such as pain or vestibular injury. This is what we call post-concussion syndrome (PCS), and it is treatable with the right type of help.
Now let me just say that I get it, concussions suck! If you’ve had a concussion, I hope to in no way invalidate your experience by focusing on mood, anxiety and beliefs. These symptoms are an understandable result of having been through what is typically a traumatic experience. It’s scary when your brain, your most valuable resource, stops working the way it used to. That sucks! It’s frightening and potentially life altering. Therefore, it is completely understandable that you would be hypervigilant for signs that your brain isn’t working or you’re scared to resume normal activities or you can’t stomach the idea of getting together with friends especially in big groups. However, these behaviors also create a fertile ground for the development of depression and anxiety, which themselves can rob you of your sense of cognitive vitality.
So what do I do if I had a concussion a year or so ago and I’m not getting better, or worse, I’m getting worse?
The answer to this question is to go talk to a neuropsychologist. Neuropsychologists have the ability to test your memory, attention and organization skills objectively. We compare your scores with those of people your same age and of similar backgrounds to determine if the concussion had a lasting impact on your thinking. Neuropsychologists are also psychologists (we all practice under the same license), so we can also determine the role that things like mood, anxiety and beliefs are playing in your recovery. Neuropsychologists understand the brain and the body. We are connected to other professionals like neurologists, psychiatrists, physiatrists (rehab doctors) and physical therapists who can further aid in your recovery.
The bottom line is that there is hope for people with brain injuries, especially for concussion. We are not all NFL players, getting knocked in the head every Sunday, over and over and over again. Take a deep breath, relax your neck and shoulders, and pick up the phone to get help. We here at CCCW are always here to help your brain. Support is right around the corner.