Traumatic brain injury: All in your head?

We all know someone who went through an event like a car accident, military tour, or sports injury and never seems quite the same. They often turn inward and make their world very small, withdrawing from friends and family. Life feels too complicated, and their self-esteem takes a beating. They look at life from the outside, wondering if they will ever feel normal again. They see doctor after doctor who can’t help or tell them what’s wrong. 

With women, especially, it is often insinuated that it’s “all in your head.” Well, the head thing is correct. That’s because your brain is in your head!

The stakes for understanding the effect of head trauma on brain function are high. Daily news is filled with the stories of NFL players who are openly confronting what may be a much bigger issue for us all. So why is identifying traumatic brain injury (TBI) tricky for the injured or even trained professionals? 

 I am a psychotherapist and neurofeedback specialist who treats traumatic brain injury (TBI). I am also a person who recovered from it. 

My 2005 car accident and resulting injury were nowhere near as bad as many. My doctor diagnosed a moderate concussion the day after an emergency room visit and prescribed physical therapy for head and neck injury. 

During that time and after, I regularly saw physicians and other health-care professionals. No one seemed to connect my dizziness, emotional roller-coaster, and the trouble I had focusing, organizing, and getting back to my life. Before the accident, I had written a book, been on TV and radio and had done countless book signings. After the October accident, I read my Christmas cards in February and couldn’t keep track of my wallet. 

As it happened, I got very lucky. I was having coffee with a friend from my old Toastmaster’s group, and she happened to be a neuropsychologist. As we caught up, I told her how happy I was to be almost finished dealing with the insurance company of the man who drove into me. I’d finished physical therapy and was looking forward to settling the claim. She leaned over and said kindly: “Dear, maybe you should have a brain scan before you settle … just in case.” 

A psychologist in Skokie did a QEEG (Quantitative Electroencephalograph) brain map. By then it had been a full six months since the accident. Through the many pages of colored brain-shaped circles and data from the EEG analysis, one number stood out: I had a 96% probability of having traumatic brain injury. My friend was right, I’m sure she knew. 

I was surprised and sad that I was still injured and had spent so much time this way. But how I could have gotten help from people who were so esteemed in their fields, yet never noticed it? One example was the physical therapy I had. It was at a very reputable center within a tony health club in Chicago. Patients included high-profile politicians and members of the Chicago’s major dance companies. How did my therapists miss this? 

In many ways, the diagnosis was a relief. It made sense out of a lot of things, like why my life was not coming together, even months after the accident. I found myself uncomfortable driving and taking on things with too much complexity, my confidence was low, my emotional life was so consuming, and my sense of personal stability felt challenged. While I was devastated and embarrassed to realize I was this injured, somehow knowing the truth gave me hope. 

Later, when the book, Stroke of Insight, came out about a scientist who observed the devastation of her own stroke, many people said, “Diane, this must be how you felt.” I’m grateful for the book and brave Dr. Jill Bolthouse for sharing her experience. 

However, brain injuries are not all alike. She had a stroke in one side of her brain while the other side was intact. Concussions typically cause diffuse axonal injury (DAI) from the brain’s movement in the skull, like shaken baby syndrome. The whole brain can be affected. The changes are more subtle and global, often with lack of awareness like I had. It wasn’t until I was well into my recovery that I could put things together and see the world I had created to manage my deficits. 

After the brain scan, I went into the psychologist’s office once or twice a week for my two years of neurofeedback treatment. They put electrodes on my scalp and I watched computer games to help heal my brain. The electrodes monitored my brain waves. When they were doing what my doctor wanted, the little Pacman would move along nicely, gobbling up the monsters. When my brain was not, Pacman would sit and spin stupidly, over and over. 

Based on a principle called “operant conditioning,” which is used to train animals at Sea World, the brain gets rewards (Pacman moving) for producing brain waves that were more adaptive. My brain was the joystick.

Improvement 

As my brain learned new patterns, and with each major shift in brain waves, my psychological states and cognitive skills would improve. Over time, working through the layers of recovery, I improved my sense of self, ability to focus, read, drive and concentrate on the world around me. Physical balance and stamina, memory and speech fluency also improved. People later told me I stopped talking slowly and was more present, as opposed to being lost in my head. 

Through the hours of treatment, something else developed: A deep desire to help people, the way this neurotherapist was helping me. I truly felt lucky to have been diagnosed and to have found treatment. I am very aware that many people aren’t so lucky. An estimated 1.6-3.8 million sports-related concussions occur annually in the United States.

As we all become more knowledgeable about the brain and brain injury, my hope is more lay people and professionals will be able to identify the symptoms of injury and help people get the care they need. 

Yes, there are costs to be borne in recognizing and treating previously undiagnosed brain injuries. But the costs of ignoring them may be far greater. When our society recognizes and accepts that, we may all be in a better place.