Tackling trauma head on
A teen athlete’s struggle to overcome brain injuries sustained through concussions
A month before Cara Griffith’s 16th birthday in 2012, a soccer game unexpectedly changed the course of her life. It would be two years before she would be able to resume the everyday activities.
It started with a concussion.
It was diagnosed as a fairly mild concussion, but it wasn’t as mild as the one she got just two months before while playing soccer. The initial injury resolved itself in a week. But this time Cara was told it would take a month to three months to recuperate.
The Amherst teen’s earlier concussion resulted from a collision with another player while playing club soccer. This concussion, which happened during a high school soccer game, occurred when she fell on the soccer field.
The recommended treatment at the time she was injured included ‘dark rooming’ – a process in which an injured individual stays in a room with no light, trying not to focus on anything.
“Things are little foggy for me around that time, but after a couple of weeks of dark rooming, a neurologist recommended taking certain supplements and prescribed some pills that help people with migraines,” said Cara. She had also been advised not to play contact sports and to take things very easy.
“This is typical protocol, to take it easy, stay low, keep stimulation to a minimum and to ‘dark room,’” said Marcia Griffith, Cara’s mom. “Basically block out as much stimulation as possible, reintegrate into school and life in a week or so, check in with the pediatrician for continued observation – obviously there would be no soccer for a while.”
Soccer isn’t a casual thing in the Griffith family’s life. According to Marcia, they’ve been a soccer family forever, and for more than a decade had been on the sidelines rooting for their kids. Cara’s older brother is a college soccer player. There was no reason to think at the time of her injury that Cara might never play again.
With each day, Cara’s symptoms magnified. It was tough for the family to know just what happened when because she was quiet and in pain, a lot of pain.
“She couldn’t listen to even a whisper of music on the radio in the car,” Marcia said. “Motion in the car became difficult as was light, sound, motion.” In time she would be able to gauge Cara’s good days based on the volume level she could tolerate on the car radio, but it would be a year before that happened.
Cara developed back and neck pain, light and sound sensitivity and fatigued very quickly. “I couldn’t focus, had trouble regulating my body temperature, vision issues, and worst of all, I had debilitating headaches,” she said. For the first six months, they never went away, and they became a daily occurrence that only grew worse after a year and a half. She experienced such bad double vision and blurriness she had trouble reading and had to stop driving.
Spinning their wheels
With each new doctor Cara saw, a new treatment plan began. She saw an osteopath, who was part of the children’s neurology unit at Elliot Hospital. During the first four months, they tried hypnosis and cranial sacral massage, changed her diet and saw a naturopath. From there Cara was referred to the sport concussion center in Boston, who referred her to a neuropsychologist.
“Seeing the neuropsychologist was one of the most frustrating pieces of my entire journey,” said Cara. She and her mother drove to Boston, where Cara said she filled out a thick packet about her emotions and pain.
“The doctor talked to me for about 10 minutes, and we did multiple brain exercises like repeating phone numbers by memory. He then had the audacity to tell me that I was so close to getting better, but that I wasn’t trying hard enough, that I didn’t want to get better.”
A great believer in the power of a positive mindset, Cara knew she wanted to get better, and while that’s all she was focused on at the time, the doctor’s words daunted her and she began to doubt herself. “I started to doubt my pain and believe that I was making it up,” she said. “As you can probably guess, second-guessing myself and doubting my beliefs led my symptoms to get a lot worse.”
Some of Cara’s medications were changed. She began physical therapy, and focused on meditation and guided imagery. By the summer of 2013, Cara had about two months where her pain was very low and she thought she was finally getting better.
But school started and that first weekend, Cara was sent to the ER due to the severe pain she was in. She was going downhill rapidly again. “I was given a take-home version of what they give you in the ER for ‘unbreakable’ headaches,” she said. Cara saw a psychologist and began chiropractic sessions seven days a week.
She was referred to Boston Children’s Hospital’s headache clinic in Waltham, Mass., where occipital nerve blocks – a combination of steroids and numbing agents – were administered; 12-14 shots in her head, neck and back, once a month, over a four-month period, while continuing physical therapy.
Cara was accepted into the Mayo Clinic Pediatric Pain Program at Boston Children’s at Waltham, and she spent a month as an outpatient there, engaged in a multi-dimensional treatment plan that included physical therapy, occupational therapy psychology, coping and meditation.
“While I was going through treatment there, I loved it,” said Cara. “I was with kids every day who had a common issue with me.”
Despite this small consolation, Cara was told by medical staff that she was either going to miraculously wake up one day completely fine or be in pain for the rest of her life. She was told the program would teach her how to cope with the pain, not make her better.
“As a parent, there is nothing worse than seeing your child in pain,” said Marcia. “I could look at her and ‘know’ exactly how she was feeling. It was in her eyes.”
During her treatment at the pain center, Cara’s back pain and some of her headaches began to get better. However, she had other types of headaches and her vision began to get much worse. At this point, Cara had just had enough.
“She was tired of being led down a path of hope only to be disappointed,” said Marcia. “We were literally spinning our wheels driving around looking for answers. It was exhausting and mentally draining.”
Resolution at last
Although Marcia was optimistic about the chronic pain program, she refused to believe her daughter would live her life in pain.
One night, Marcia was on Facebook and came across a post by a woman who she had met and befriended at a conference several years earlier. The woman had posted a video on her wall that caught Marcia’s attention. The video titled, “FOCUS Covering Concussions,” is an Emmy-nominated piece about a girl’s experience with a concussion and the treatment that healed her.
“I could hardly contain myself when I realized that the doctor responsible was her husband,” said Marcia. “I cried and had a ‘knowing’ in my gut that I’ve never had before. This was our answer.”
Marcia saw the video on a Wednesday in August 2014 and immediately reached out to the doctor. She and Cara were in his office the next Wednesday for an evaluation and she started treatment the following Monday. For Marcia, there was no hesitation – “In my gut I knew. From the beginning, he was truly invested in helping her get better.”
Cara, though, was skeptical. She knew her mom had talked to Dr. Victor Pedro, the director and founder of Rhode Island Integrated Medicine, and arranged for an evaluation to see if she would be eligible for treatment. But, “at that point, it had been almost two years from my concussion and I had promised by so many doctors that they would be the ones to help me get better, that it almost became less about me and what I wanted and more about the puzzle my symptoms were.” After many disappointments, she was reluctant to see yet another doctor.
During Cara’s evaluation, Pedro was one of the few doctors she said was truly listening to what she was saying. “He is also the only doctor who could tell what was specifically wrong in a certain part of my brain and made sure I understood how my symptoms tied into the larger picture,” she said.
For Cara, the biggest difference was that Pedro treated the base and cause of the problem. “All of the other treatments I tried all worked on symptoms and not the root of the problem,” she said. “He made sure I understood what was wrong, why my symptoms were happening and how the treatment would affect those changes.” He also checked in with Cara via text or phone call once a twice a day and gave her suggestions on how to relieve symptoms at home.
For Marcia, the evaluation itself brought news that they had been hoping for two years to hear – Pedro told them where in Cara’s brain the issue was and how he was going to fix it. “If the brain healed, the symptoms would go away. What a concept!,” Marcia said, “No pills, non-invasive, gentle, no infliction of pain for gain. Hard to believe, I know, but she even felt better after her evaluation.”
The treatment Cara underwent is called Cortical Integrative Therapy. According to Pedro, CIT provides an alternate and highly effective approach that doesn’t use drugs or surgical interventions. It’s based on the presumption that the symptoms of many nervous system-related disorders are the result of the brain losing its ability to properly control its functions.
“Cortical Integrative Therapy is a non-invasive diagnostic process and treatment program designed to locate the area or areas of neurological dysfunction in a patient who has sustained a traumatic or acquired brain injury and determine the optimal treatment protocol for the patient,” said Pedro.
The diagnostic process establishes a unique treatment plan, which is patient specific, because no two brains are alike – nor are any two injuries. As such, there is no one universal treatment for all patients. “Cortical Integrative Therapy attempts to identify the best, most proper stimulus/modality/exercise (aka ‘competent stimulus’) that will be the most effective treatment specific to each patient,” said Pedro.
Victor Pedro’s background and training is in vestibular disorders and visual systems and their effects on the autonomic nervous system. “That system dictates the flow of blood to the brain and body and their ability to repair or restore themselves,” he said. “Many of concussion’s long-term/chronic symptoms are related to the dysregulation of the autonomic nervous system. This lack of proper regulation is a major component in many, if not most, neurologically based disorders.” Cortical Integrative Therapy addresses dysregulation as one of its first priorities.
“When Cara first came to our office, as part of her initial evaluation, we found that her fatigue, headaches, heart racing, inability to recover from minimal activity and overstimulation by movement, light and sound was in part due to poor fuel delivery by this now chronically deregulated system,” said Pedro. In taking several physiological – not symptomatic – measures, and determining they were abnormal and not functioning properly, a treatment plan was devised based on their findings. Pedro said if she were responsive to this treatment in real time, it would be a strong indicator she could be a candidate for treatment in their clinic.
When he first heard Cara’s story, Pedro was hopeful he would be able to help her. Once he spoke to Cara and Marcia, it was clear that her story was quite similar to many other severe chronic concussion patients.
“Despite the doctor and treatment fatigue, Cara maintained her strong drive and determination to fight through her symptoms and try again to get better,” said Pedro. “Her positive attitude was her greatest asset.”
The first and most important step in her treatment was to stabilize the areas that had been injured. Cara’s treatment would be in phases, as she was unable to walk or exert herself for more than 5-10 minutes. The first step was stabilizing her autonomics or fuel delivery, before proceeding to use her visual system to stabilize her vestibular system and increase her sensory processing capacity and endurance. Next, she was introduced to moving environments and moving in them. Then they focused on strengthening those areas of the brain and integrated functional systems, building and increasing metabolic capacity. They also had to promote growth (neuro-plastic changes) within the entire system in which the injured area resides. “Finally, to put all the pieces together, nutritional, social, emotional and physical to help her become the optimal person she can be,” said Pedro.
And those pieces were all put together, culminating in successful treatment for Cara. She’s at a point where she is relatively asymptomatic, able to travel in a vehicle, sustain a high level of mental activity, enjoy mild physical activities for 75 minutes, interact with family and friends and has been working with professionals to reintegrate into school once again.
Loss and re-entrance
All of this is nothing short of a miracle for Cara and her family. Not even taking into account the pain she endured for so long, there were so many other changes in Cara’s life. She felt completely isolated during that two-year period, and many of the medications she took made her feel stupid and slow. “I had major issues going to school and connecting with kids my own age. I lost a lot of friends and I felt like I stopped being able to connect with a lot of people,” she said.
Cara was also a good student, who loved learning, and loved the outdoors and music. She played the saxophone and the cello and most of all, loved soccer. She envisioned playing soccer, like her brother, at the college level. “But I realized that part of my life was over and letting that go wasn’t easy,” she said. “When I got sick, all of that changed. I struggled and barely attended school, I stopped playing music, I couldn’t connect with my friends, and stopped playing soccer. It completely changed who I was.”
Marcia, who is self-employed, focused for two years on Cara’s needs, noting that it would have been impossible to work for an employer and be available for her daughter’s medical treatments and doctor visits. If there were a silver lining at all, it would be the time they spent together.
“Cara and I have grown incredibly close through all of this and she’s absolutely my hero,” said Marcia. “To see her come through all this holding her head high and for the most part, free of complaining is amazing.”
As for Cara, she’s been getting her footing again back in high school, spending time with friends and figuring out how to enjoy life once more. She’s focused on seeing if she can catch up on school time she missed – this is her senior year – and graduate on time with her class. “It still feels very surreal being better and cured.”
She wants to raise awareness and support those with concussions; to let people know they aren’t alone. She said athletes need to know that that they have to stop when they get a concussion.
“In a sense, they need to be selfish, to focus on getting healthy and healing their brain, instead of immediately getting back into the game. Athletes need to know what a concussion actually is and what it means to get one, because I never fully understand until about a year into mine. Just understanding what one is can help you protect yourself.”
Pamme Boutselis is a N.H.-based writer, a content director at Southern New Hampshire University and a serial volunteer. Follow her at pammeboutselis.com or on Twitter @pammeb.