Searching for Female CTE?

ORIGINALLY POSTED 11/21/15

There is nothing to be found on the internet about CTE in women. Is CTE is very rare in women or are women's brains very rarely examined for CTE? 

I wanted to find out and I thought Dr. Bennet Omalu was the best person to interview on female brains and CTE. And in February 2015, I had the chance to ask Dr. Bennet Omalu in person if he had ever seen a case of CTE in a female's brain. I was at Santa Clara Brain Injury Conference presenting on the PINKconcussions female concussion research study, and he was presenting "Emerging In-Vivo Diagnosis of Chronic Traumatic Encephalopathy (CTE)" on his efforts and reasons behind his naming of term "CTE." 

Meeting Dr. Bennet Omalu at Santa Clara Brain Injury Conference, Feb, 2015

Meeting Dr. Bennet Omalu at Santa Clara Brain Injury Conference, Feb, 2015

When I asked, Dr. Omalu told me he had not himself seen an example of CTE in a woman's brain as very few female brains have even been examined; but he had read a paper about one case of CTE in a female.

Finding this one paper became my quest for the Holy Grail, but despite my best efforts and asking a number of knowledgeable people, I was unable to find any such paper. Even my regular scientific sleuths were unable to find any reference of female CTE in their queries. 

With the National Summit on Female Concussions and other TBIs only four months away, I was running out of time and decided if anyone would know of this paper, it would be Dr. Ann McKee of BU CTE. So I made it my mission to ask Dr. McKee who I knew would be at the Concussion Legacy Foundation Gala on November 4, 2015. Luckily for me, there was an empty seat at her table, and I was able to ask her if she knew of the paper Dr. Omalu had read. 

Dr. McKee replied, "there is not just one paper, but there are two papers on female CTE," and she would send both to me. And she did send me the two papers for which I am most grateful.

One paper she sent was by Dr. Patrick Hof on "Lucy," a 24 year old Autistic woman and the other paper by Dr. G. W. Roberts on "Wilma," a 76 year old woman who was the victim of domestic violence.

I was able to track down and interview Dr. Hof. Here are my post on my interview with Prof. Hof on Lucy. But since I have not yet been able to locate Dr. Roberts, here are just my thoughts on Dr. Roberts' paper on Wilma. I hope to find Dr. Roberts to learn more about Wilma. 

LINKS: Lucy, Wilma

Coming soon: Our census on female brains and potential female donors in US Brain Banks

Guest Blog: Concussions: The Gender Differences

Arleigha Cook By Arleigha Cook as a Guest Blogger

“You just have to get back out there.”

“That’s not a concussion headache.  That’s just a hunger headache.”

“Just start exercising.  That helped me.”

These quotes are all from conversations I had regarding concussions.  At a glance, I’m sure you sense a pattern.  Each of the above is a well-intentioned piece of advice, but, characterized by the notorious word “just,” each of these replies is incurably dismissive. In fact, they all tore at something inside me, as if the speaker took a look at me, saw my hope for validation of my concussion symptoms, and then pulled out the carpet from underneath me with an overtly simplistic suggestion of a quick recovery method that I should have seen before.

Interestingly, these people were brain injury survivors themselves.  And they were all male.

Hearing from another concussed individual that I should have been doing something different from the get-go – especially something as simple as beginning to exercise or just “getting back out there” was devastating.  To this day, each time I hear a suggestion of that nature, I sigh and push away an emotional reaction.  It was especially invalidating to hear from one of my friends (a skier and rugby player who had previously sustained three concussions) who said, “That’s not a concussion headache.  That’s just a hunger headache.”  To me, the pain of a “hunger headache” is the same as that of a “concussion headache.”  A hunger headache is a concussion headache.  Likewise, I have not been able to exercise without almost immediately experiencing concussion symptoms for over a year and seven months – I’m sure you can imagine how quickly I dismissed his “advice.”

These interactions got me thinking: men seem to recover from concussions more quickly than women do.  And even when they don’t, they seem to have a dismissive or nonchalant attitude about their recovery. So I started researching that idea, but only came across studies suggesting the contrary.  For example, a recent study published in the journal Radiology suggests that men actually take longer to recover from a concussion than women (see a Huffington Post article about the study here).While I have always thought I sounded like a hypochondriac, my tendency to air on the safe side may actually prove more beneficial than the laissez faire attitudes of concussed males. More than a few times I’ve come across men with concussion experience who think I’m exaggerating my symptoms (hence, “That’s not a concussion headache.  That’s a hunger headache.”).  The study featured in the Huffington Post article above even found, through diffusion tensor imaging (DTI – a form of MRI), that men seem to sustain significantly more abnormalities in a particular area in the white matter of their brains, otherwise known to scientists as the Uncinate Fasciculus.

Is this related to a basic genetic difference between men and women?  Is it the significant change to the Uncinate Fasciculus that causes male concussion patients to underestimate the time, importance, and attention their brains need in order to recover more quickly and effectively?  Presently, it’s hard to say.

My observations – which largely consist of college-age male athletes who receive concussions from football, lacrosse, and soccer – indicate that most men may have an oversimplified idea of the effort and duration involved in a timely and effective recovery.  While many women who have sustained one or moreconcussions seem to doubt their recovery or want to protect themselves through limiting exercise or other potentially dangerous activities, men seem to bear few reservations about returning to physical activity post-injury.  And, research has shown that maintaining a lower level of physical activity – if possible – can aid in the recovery process (see University of Buffalo’s 2013 study “Exercise treatment for postconcussion syndrome: a pilot study of changes in functional magnetic resonance imaging activation, physiology, and symptoms”).

This leads me to consider whether or not one’s cognitions can influence recovery speed.  There are biological differences thatinfluence concussion incurrence rates and recovery in men (such as neck strength, which can affect the damage done to the brain upon impact), but psychological state may be crucial in regards to recovery as well.  My questions: Is a healthy mental state essential for faster recovery?  Do males with concussions tend to have healthier mental states than do females with concussions?  If so, how and to what degree does this impact recovery?  My personal observation dictates that many athletes who have ended their careers as a result of concussion buildup have experienced long-term depression and anxiety because of the sudden life change due to the incurrence of brain injury.  I have especially noticed this in females.  This is not to say that males do not experience these manifestations of psychological distress; rather, it is to insinuate that psychological elements of recovery seem to affect women to a more severe degree and for a longer duration.

For now, we can only hypothesize.  The question of gender influences on concussion recovery is one that is currently being studied, and with the accelerating growth of the concussion field, there is much more to learn about gender, psychology, and outside factors that impact the recovery process.  And of course, with the more that we learn, the more we discover there is to learn.  There may be a large psychological component in recovery, and males may be predisposed to more easilyreframing cognitions surrounding this invisible injury.  Certainly there should be research done on this in the future.

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Arleigha Cook is a brain injury survivor and a former soccer player and sprinter for Trinity’s Womens’ soccer and track and field teams.  After surviving her fourth concussion and receiving a diagnosis of Post-Concussion Syndrome, she has turned her focus to educating others about the effects of concussions.  An English major with a concentration in creative writing, Arleigha started a blog, www.brainmatter4.blogspot.com, on which she posts her thoughts about her own personal experiences with brain injury.  She has also been a guest blogger for B Stigma-Free and has spoken with Elite Sports Medicine at the Connecticut Children’s Medical Center about concussions, using her personal story as an example.  Currently, she is over 1.5 years into her recovery.

 

Briana Scurry Guest Soccer Inspiration/Concussion Education

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Mind Your Melon Invites

Youth Soccer Families to an Evening of

Soccer Inspiration and Concussion Education

with Special Guest Briana Scurry

Legendary US Goalkeeper

World Cup Champion

and Two Time Olympic Gold Medalist

Thursday, May 1, 2014

Sponsored by Shoreline Football Club

This event is pro-sport, upbeat and educational for young players from age 7 and up. Learn about the joys of soccer plus concussion education. Produced by Katherine Snedaker, MSW, the Mind Your Melon speakers don’t believe in scaring kids. We provide kids with helpful information to help make playing all sports safer.

3 PM Hangout with Briana @Location TBA in Darien/Stamford Briana and Katherine meet and chat with athletes with concussions or post concussion syndrome for a quiet, supportive 45 min talk – any age – no cost  - Please RSVP with tickets here.

7-8 PM Soccer Inspiration and Concussion Education Event @Bluestreak Briana gives talk of inspiration and concussion education, plus local youth players/parents tell their stories followed by Katherine’s educational game “Concussion Simon Says.” General public, please buy tickets here. Shoreline Families have been sponsored by their Club and just reserve a free ticket.

Want a Ball signed by Briana for Your Child? The Education Event will end with Briana handing out up to ten pre-signed balls to raise funds to cover event expenses. Your child will be called up on stage to receive the ball from her, and be thanked as a supporter. Suggested donation of $200 for a soccer ball for Briana will sign with your child’s name and hers before the event. Please buy balls here BEFORE the event.

8:15-9 PM Intimate “Meet and Greet” Reception @BlueStreak (Total of 6 family tickets are available) Briana meets with kids and their families after the event. Dessert. Briana will sign photographs which we supply. Suggested donation of $400 for one family up to 5 members – Please buy tickets here.

Briana was a goalkeeper for the United States women’s national soccer team for most of the years between 1994-2008, earning a record 173 caps for the United States. She started 159 of those games and finished her international career with a record of 133-12-14. She also earned 71 shutouts.

 

Event would not be possible without support of our sponsors:

Bluestreak InjureFREE SoccerAndRugby and Fairfield County Sports Commission

Mind Your Melon is the youth outreach program of SportsCAPP.com

See all our websites for more information on Concussions

SportsCAPP.com Youth Sport Concussion Education for Players-Coaches-Parents

PinkConcussions.com Info & Research on all Types of Female Concussions

TheConcussionConference.com Professional Training for School Nurses-Staff-MDs-ATs on Return To School next event is May 7, 2014, Parents are welcome to attend.