New CTE Study Categorizes Stages of Degenerative Brain Disease in Veterans, Athletes

By Brenda L. Mooney

BOSTON – For the first time, researchers have categorized chronic traumatic encephalopathy (CTE), the degenerative brain disease associated with repeated brain trauma in military combat and contact sports, into four stages of severity.

In a recent study from the Veterans Affairs Boston Healthcare System, Boston University Center for the Study of Traumatic Encephalopathy (CSTE) and the Sports Legacy Institute (SLI), 68 cases of CTE were identified among deceased athletes and military veterans whose brain and spinal cords were donated to the VA CSTE Brain Bank. The study, which was published in this month’s issue of the journal Brain, represents the largest case series of CTE published to date.

Co-Directors of the BU CSTE include, in order, former wrestler Chris Nowinski; Robert Stern, PhD, professor of neurology and neurosurgery at BUSM; Ann McKee, MD, professor of neurology and pathology at BUSM and director of VA CSTE Brain Bank at VA; and Robert Cantu, MD, clinical professor of neurosurgery at BUSM.

Of the 68 cases of CTE found in males between 17 and 98 years old, 64 were athletes, and 18 of those were also military veterans. Of the athletes, 34 were professional football players, nine only played college football and six had only played high school football. The group included three additional veterans who did not have a sports background.

Evaluation of one of the study subjects — for whom self-injurious head-banging behavior was the sole environmental exposure — underscored the view that repetitive brain trauma alone is sufficient to trigger CTE in some cases.

“This study extends our knowledge concerning the spectrum of the clinical and pathological abnormalities associated with CTE, although further studies are needed to investigate critical aspects of trauma-induced neurodegeneration, including the incidence and prevalence of CTE; whether the symptoms of CTE are distinctive from other conditions; how genetics influence susceptibility or resistance to CTE; and whether other environmental exposures also play an additive role in the development of CTE,” said lead author Ann McKee, MD, director of the Neuropathology Service for VA New England Healthcare System, professor at Boston University School of Medicine (BUSM) and co-director of the CSTE.

McKee also is director of the CSTE and the Brain Banks for Boston University’s Alzheimer’s Disease Center, which are based at the Bedford, MA, VA Medical Center.

CTE, which appears to be slowly progressive in most individuals, is characterized in early stages by the presence of abnormal deposits of a protein called tau in the form of neurofibrillary tangles, glial tangles and neuropil threads throughout the brain. These tau lesions eventually lead to brain-cell death. Currently, CTE can only be diagnosed postmortem.

Among the veterans found to have CTE were marines, soldiers and sailors from World War II, the Vietnam and Gulf wars, as well as the wars in Iraq and Afghanistan. Researchers also found evidence of the condition in 50 football players, including 33 who played in the National Football League (NFL), one in the Canadian Football League (CFL), one semi-professional player, nine college players and six high school football players. CTE also was identified in four National Hockey League (NHL) players, one amateur hockey player, seven professional boxers, one amateur boxer, and one professional wrestler.

“While it remains unknown what level of exposure to brain trauma is required to trigger CTE, there is no available evidence that occasional, isolated or well-managed concussions give rise to CTE,” explained co-author Robert Cantu, MD, co-director of CSTE and co-founder of SLI.

The new study provides specific pathological criteria for the diagnosis of CTE and divides CTE into four stages of disease (Stages I-IV). Based on interviews with families of the deceased donors, researchers were able to develop a list of symptoms common to stages of the disease:

• In Stage I, headaches and issues related to attention and concentration were common;

• In Stage II, the symptoms expanded to include depression, explosivity and short-term memory impairment;

• In Stage III, reported symptoms included cognitive impairment and problems with executive functions, specifically planning, organization, multitasking and judgment.

• In Stage IV, there was evidence of full-blown dementia (i.e., memory and cognitive impairments severe enough to impact daily living).

While CTE appeared to be slowly progressive in most of the study subjects, it may not progress or progress at the same rate in all patients, study authors noted. Overall, however, 89% of those diagnosed with CTE through pathological studies had demonstrated clinical symptoms involving cognitive, behavioral or mood impairments before death, according to the report.

In addition, one-third of the CTE cases were diagnosed with additional neurodegenerative disease, including:

• Motor neuron disease (12%);

• Lewy body disease (16%;

• Alzheimer’s disease (11%); and

• Frontotemporal lobar degeneration (6%).

Years before the onset of cognitive and behavioral symptoms, most of the individuals with CTE and motor neuron disease (CTE-MND) had suffered symptoms of motor weakness, atrophy and fasciculations, or muscle twitches, the study notes.

The next goal of researchers is developing methods to diagnose CTE during life, according to co-author Robert Stern, PhD, Boston University professor of neurology and neurosurgery.

“The ability to diagnose CTE while someone is alive is an important next step to allow us to address some of these important issues, as well as develop and test treatment and prevention strategies for the disease,” he said.

In addition to raising troubling questions about the safety of contact sports, the research underscores that CTE could have devastating implications for military veterans and the VA’s ability to care for them.

A study released this summer also found CTE indications in brain tissue from blast-exposed military personnel. That study noted that as much as 20% of the 2.3 million troops deployed to Iraq and Afghanistan since 2001 could have suffered a traumatic brain injury (TBI) as a result of exposure to IEDs. In a worst-case scenario, 460,000 veterans could be at risk for CTE.

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Comments (13)

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  1. jennifer says:

    Is there currently any organizations raising awareness and funds for research to diagnosis while someone is alive? Partically veterans with TBI injuries. Currently too many veterans arhaving issues with Dr. Differentiating what is PTST relates and TBI related but display large characteristic of CTE without assistance or understanding.

    • Zach S says:

      Great question, my dad in the last 6 months has gone downhill quickly. he is exhibiting signs of CTE and so far the VA hasn’t even labeled him bipolar. Best way to proceed?

  2. Nathan says:

    Being seen for TBI and repeated blast exposure (currently on active duty) I am acutely aware CTE may already be playing a role in my life. But until further research is done and Army decides that CTE can be confirmed in soldiers not much will be done in the way of treatment. Military and va have to find way to determine it while one is alive before they will recognize soldiers who actually have CTE and many of its symptoms. Will continue to be labeled as TBI, PTSD or array of other things for now, many symptoms shown are one in the same. Out reach to neurologists and medical professionals is the only hope in recognizing it while alive and forming groups of support.

  3. Bob says:

    I am a retired Navy vet and I played football in high school. I have had 8 concussions with lose of conscience. I have had two concussions with permanent memory loss. I don’t recall the three days prior to one of my concussions. I have had seizures after one concussion when I was in high school. I have since had what I would say were smaller more subtle and I could hide the fact they were happening to me. Now i’m in my fifties and the symptoms are much more acute and they change all of the time. All of my sensor functions don’t always work. Hearing, seeing, smelling, tasting are all things that I have just recently learned to question all of the time. Anger came come on so fast and for no reason at all. For the first time ever about three days ago I felt something that I only can describe as a flush of anger, I mean i could actually feel myself turn from standing and meditating in my yard to this rush of anger. I stood there and thought to myself why am I so angry and I got even more angry just questioning myself. I also have what I would call active dementia. I can go to a store and be in isle looking at a product and forget I’m in the grocery store. I’m an engineer and I’ve realized that there is noway i can concentrate to work. It took me 10 or more years of frustration, not being able to concentrate or try to plan or organize to realize I couldn’t continue working. I have motion sickness nearly everyday now. It used to be once or twice a week but now it’s everyday or multiple time during the day. I’m not sure how this progresses but in the last two months I have been living in hell in my brain

    • Matt says:

      Bob, i am 44, ten years out since my lasf TBI of 4. I identify and experience much of the same my brother, you are not alone. with me the anger would also stay with me for 3 – 4 days. A very small dose, 15 mg’s of Cymbalta helped tremendously with the anger. i am know with a new doctor who seems to be guessing and he recently took me off the Cymbalta and the anger and rage came roaring back within days, it is a horrible existence. I am currently applying for VA benefits. Boston VA Healthcare is currently conducting trials of using a spectrum of some colored light directed at the skull. it was succesful in mice and healed brain injury and ceased progression of CTE in mice. My only hope is to get approval and beg whoever i have too to get into the human trials. I have friends who have found trenendous comfort from God via prayer. I have been trying to find him but he eludes me to date. I really wanted to let you know your not alone my brother.

      • Stephen says:

        matt,

        i am sad to read about what you’re currently experiencing… but am very, very relieved to read that an anti-depressant has helped you with your TBI-induced anger/rage. I too am suffering from multiple TBI’s (8+ concussions in a 12 year period. all alcohol-violence/accident related. i am now sober, thank god)…but my life is a living nightmare – to the point where i might just pick up the bottle again (if it’s CTE, what difference does it make anymore?). I become enraged for no reason. Depressed/suicidal for no reason. Emotional (crying) for no reason. Panic-y for no reason. sometimes all at once (worst). I hope that an anti-depressant will help me with this, otherwise I don’t know how much longer I can go on…
        they need to at least find a biomarker for this monster in the living, and soon. in a perfect, compassionate world the NFL/NHL/Boxing Federation would be throwing millions upon millions at these researchers.
        anyway, I am contacting my psychiatrist so i can get on cymbalta. i’m desperate to do something…
        thanks. take care (all of you).

  4. Brett says:

    I have had 4 and 2 were sports related 2 other from car accidents. But was diagnosed with 2 at the hospital and 2 other by an RN. Age 10, 18, 25, and 30. I am now 40 and have been experiencing what some describe as stage 2 CTE. I could be wrong, but I’ve noticed localized headaches that come and go but also memory loss, social instability & erratic behavior. I’ve also notice while very rare, trouble with the right side of my mouth making words. Wonder if those concussions are triggering this?

  5. Carrie says:

    I am a 50 year old female, non-military, have had a fractured skull and 7 concussions throughout my life and was finally diagnosed with the aftermath of a life full of brain injuries. I lost count of the number of times I was told by doctors and medical professionals “Just don’t get another head injury!” and not taken seriously. I understand it is difficult for people who have not experienced what we are all experiencing to understand, but frustrating when much of the medical profession is unaware of the recent progress in diagnosing and treating brain injuries, and give you antiquated care or direction.
    I am very sorry to hear of all the problems all of you are having, I can relate completely!
    Does anyone know of any studies for non-military and non- football/boxing/hockey people?

  6. Erik says:

    I hope the inclusion of VA personnel into these efforts is more than a token gesture or simple curiosity on their part. This work needs to be taken very seriously and it’s finding need to be disseminated into the regional hospitals and used and not buried in the bureaucracy where it never reaches the patient, This has been my experience thus far with this issue and I hope it gets better over time. Much time and data has been lost as veterans have been cast off when their symptoms did not fit into the neat little boxes the VA had ordered for them or proper lesions did not show clearly enough on CT scans, Said solders were often tossed out of TBI clinics and sent to mental health treatment due to the elusiveness of the physical evidences that were avalaible to demonstrate CTE. Once there these soldiers were not to be taken seriously for their symptoms and often ridiculed for them. As I stated.. much data is lost forever on the early stages of this as these were people who had sustained often catastrophic injury from massive blast pressures and were in a position to give good account of what they were percieving as that progression was occuring on a rapid scale and they were ignored completely as they were trying to tell people about it. This data could prove very useful in it’s early stages just as data in the late stages can be. Patient care does matter and the people that live with this stuff need to know early on what they are dealing with and how to handle it. Identifying these people is not rocket science and taking them seriously is a simple matter of respect and neither of these things is happening in the VA system to date.

  7. Fox says:

    I am a survivor of a brutal life of DV. Which thank god is over. I made it to stage IV with PTSD in the dark. I have had it for ar least 7 years. Every doctor and hospital missed it. They thought it was every mental illness going. Gave me meds that made it worse. Then they all, including my family, accused me of being on drugs because of my behavior, it was heartbreaking as I do not use drugs. I was treated like an idiot and constantly put down at work for being a bimbo. I did have a very high IQ and my neurologist attributs that to my ability to have survived without even knowing. I only found out I had it this year when I noticed a big change in my athletic ability. My left side did not move with my right, it was getting confused, slower. I lost my children, my family, my home and mind. I am 35, beautiful and wasrobbed of a good long healthy life. I fight it everyday just to see my children again. They have been told what is wrong but because of the lack of understanding of CTE in medicine let alone court system, I must wait till February to see them. I knew there was something really badly wrong but no one listened. We need, deserve more attention, funding and treatment not in mental institutions…CTE wards with respect. Regardless of who we are or how much money is in our wallets. We are survivours that live not even knowing what is going to really happen or even when. I have started having seizures and pray to see my children before time runs out for me. My tau is spreading through my whole brain. The worst part is, it is most dense in the front right temporal lobe. It is cruel and slow. My prayers for all of us. I attribute my survival to the love I have for my children. Be strong and don’t give in. I believe there is a cure xx

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