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By Lori Shridhare
May 5, 2023

Unexpected Finding: In-Person Assessment Study of Former NFL Players Leads to Treatable Neurological Condition

Five Questions with Adam Tenforde, MD, associate professor, Department of Physical Medicine and Rehabilitation, Harvard Medical School, and co-investigator, In-Person Assessment Study, Football Players Health Study at Harvard University.

As part of the In-person Assessment Study, a 54-year-old former NFL player was tested after he was previously diagnosed with frontotemporal dementia prior to his participation in the study. A brain MRI examination revealed instead that he suffers from Normal Pressure Hydrocephalus (NPH). What’s the significance of this finding?

Hydrocephalus refers to increased fluid that compresses the brain. In our case report, we describe radiographic features that were suggestive of hydrocephalus. The brain normally generates cerebral spinal fluid, which helps to bathe the central nervous system, but hydrocephalus is an accumulation of this fluid. Essentially the excessive fluid can compress the brain. This can then lead to a number of different neurobehavioral changes.

Sometimes the effects are noticeable to those who have this condition – their mood can be altered. Balance is affected if the excess fluid compresses the cerebellum. It can also control some of the brain stem functions and contribute to urinary continence. So essentially this player had a number of these symptoms, but he only learned he was suffering from Normal Pressure Hydrocephalus (NPH) after participating in our In-Person Assessment Study which includes an MRI of the brain. After each player completes our study, which we describe a “head-to-toe” evaluation, key investigators review the findings and debrief with each study participant.

Once we discussed the radiographic findings, there were follow-up tests that were advised to confirm this diagnosis. If radiographic findings were confirmed with other tests to support diagnosis of hydrocephalus, this condition could be treated under the care of a neurosurgeon. The good news from his case was that he did undergo follow-up tests, had surgery, and reported that it made a significant difference in terms of how he was thinking, feeling, and functioning. He was incredibly grateful to our research team for identifying a treatable cause of his cognitive and functional decline.

Your case study notes that those who have a history of playing collision sports are at a higher risk for developing NPH. What guidance can you offer to athletes and former athletes?

One of the interesting features of this investigation was identifying hydrocephalus in a former NFL player. This isn’t something that’s well described in the literature. When reviewing risk factors for hydrocephalus, this can happen spontaneously, or it can be related to head trauma. So when we examine MRIs of the brain, as part of our standard process in these assessments of players, it wasn’t with an a priori suspicion that we were going to identify a subset of former players with hydrocephalus.

This was an interesting finding. And what we try to do when we identify abnormal findings is to understand whether they might also be found in the general population or in certain medical conditions. In this player’s case, NPH was identified as consistent with what some of the conditions we might see in an individual who is symptomatic with cognitive or behavioral changes.

What is the treatment for NPH that this player underwent?

While we don’t have access to the former NFL player’s external clinical notes, we know that he completed surgical treatment of hydrocephalus with placement of a shunt. Essentially what a shunt does is it creates an alternative pathway for the excessive cerebrospinal fluid to leave through the central nervous system. In this way, the fluid can essentially re-equilibrate. Normally cerebral spinal fluid flows through a series of chambers in the brain, and is also reabsorbed by cells that line the central nervous system. So the shunt creates an alternative a pathway for the fluid to leave the central nervous system, allowing the body then to deal with that excessive fluid.

Can this case study provide guidance for providers in diagnosing cognitive impairment, and to avoid misdiagnosing CTE, which can only be diagnosed post-mortem?

We see with this case report that it’s important to always be curious as to why an individual experiences a change in function. When we conduct these assessments, we have standard measures including MRIs to scan systems and organs in the body, as well as functional and cognitive tests. We flag any abnormal findings, as well as review the results with each participant that could be clinically actionable.

So when we think about any potential changes in overall clinical management of a patient who’s presenting with cognitive impairment, I don’t want to overstep in saying that we are providing a strong recommendation that every patient needs an MRI of their brain. But I think the big takeaway is to avoid preconceived notions about why a patient or study participant may present with a particular set of symptoms.

In medicine, we are always trained to document and ascertain a detailed history and physical examination of our patients. But if you can identify possible biases in how you approach a current or former athlete, you may identify alternative diagnoses other than CTE. It’s one of those challenges – to date, there’s no definitive way to diagnose CTE pre-mortem. So we can only currently rely on a post-mortem diagnosis.

We note there can be unconscious bias in how we approach former and current athletes, and those can affect care. For example, potentially harmful bias is when conditions may include not addressing high blood pressure or other cardiovascular risk factors that would normally be treated in individuals who are less physically active or athletically gifted. As a result, sports medicine providers may miss the opportunity to appropriately counsel patients and offer primary prevention of medical risk factors that would be treated in the general populatoin.

In professional football, for example, with the prevalence of concussions and the elevated concern around the long-term effects of traumatic brain injury, these can all become grouped together into assumption that all of these symptom are indicative of a diagnosis or condition that is untreatable. One of the key findings from our work on this ongoing study is that when we take a more comprehensive approach, we may find alternative explanations for functional decline.

This case highlights the challenges in diagnosing cognitive decline. In our case, participating in a research study allowed for a fresh perspective that challenged the prior diagnosis of frontal temporal dementia. For this former player who was ultimately diagnosed with NPH, one of his motivations for participating in our study was to try to understand his overall health and well-being, which is one of many reasons why people feel called to participate in research. So it was quite rewarding for us to be able to identify an alternative cause of cogntiive decline which is treatable.

These are important points. Can you say more about what might stand in the way of having a clear picture of a condition or diagnosis when a physician is caring for an athlete?

Physicians and other sports medicine providers who works with athletes may make assumptions about athletes and their health at younger ages and miss the opportunity to treat conditions that are more common as we age. One of our studies aimed to address the question about athletes and the “healthy worker” bias in this population. Evaluating talented athletes with different sport exposures of Major League baseball players and former NFL players, the leading cause of death in former NFL players is not neurocognitive decline or other brain-related diseases, it’s actually cardiovascular disease as it was in MLB players. This is critical information and education that we’re trying to get out to the public and NFL community, so we can begin to change the way that we approach healthcare for athletes. So much is at stake.

On our study team, we spend a great deal of time disseminating information to former players, informing them on ways they can be proactive about their brain and heart health, about effective ways of treating muscular pain, treating sleep apnea, hypertension, weight gain, osteoarthritis and other relatively common conditions  in these populations. Once these common conditions begin to be treated, there can be a tremendous change in the way these former athletes think, feel, and function. We want to send the message that it’s possible to rethink the way we communicate with former athletes about their health, that many of their conditions are more treatable than they realize.

What guidance can this case report offer for providers who treat athletes who have a high concussion symptom score?

This is where we return to the role of imaging in helping to diagnose a brain condition or injury. We rely on imaging to identify structural injuries in the brain, and while scanning a patient, we may discover, through an MRI or CT scan, a diagnosis such as Normal Pressure Hydrocephalus.

With this case study, neuroimaging was helpful in guiding clinical decision making. So I would say, imaging is a reasonable consideration. If a provider sees a patient who has a history of head trauma, it’s worth considering alternative diagnoses. Recurrent head trauma can lead to neurodegenerative disease, but also may be the result in alternative neurological conditions.

One of the main takeaways of this case report is that some forms of cognitive impairment are treatable. Do you have any comments on this and how clinicians might change the way they evaluate neurodegenerative symptoms in players?

I think the big takeaway is to remain curious as a physician. Follow the principles we were taught in medical training. to conduct a detailed history, physical examination, maintain a broad differential diagnosis, and consider the role of advanced imaging and other testing. Not all cognitive changes are explained by post-concussion syndrome or signs of TES. Recognizing CTE is currently a post-mortem diagnosis, we should seek opportunities to explore treatable causes of cognitive impairment in former athletes.


Action items for former NFL players.

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