Post-Concussion Syndrome: A Physician-Mother’s Perspective
“I miss my mind and my body”
This poignant but accurate statement of my daughter’s is her description of her post-concussion world. In January 2012, my daughter, Caitlin, two-time Olympic women’s and professional ice hockey player, Harvard graduate and law student, suffered a concussion (without loss of consciousness) during a game. A month or so later, deemed “recovered,” she returned to play for her professional team. She was reinjured as a result of a vicious blindside hit and subsequently found herself unable to read, remember, think clearly, go outside without dark glasses, or stand for 5 minutes without debilitating headaches, dizziness, and crippling fatigue. She consulted a variety of mainstream medical concussion experts and was basically told to go home and rest. Five months later found Caitlin still in the throes of post-concussion syndrome shared with so many others, including some of her teammates:
- Somatic (headaches, dizziness, fatigue)
- Cognitive (memory and concentration problems)
- Affective (irritability, emotional lability, depression, anxiety, trouble sleeping)
In addition a particularly difficult problem is the sense of isolation experienced by the patients due to the loss of their normal intellectual and physical sense of orientation, really the loss of their world. Their isolation is exacerbated by the lack of understanding of others due in part to the invisibility of the injury. To the outside world the patient looks ok. As an example, a teammate who also suffered a concussion related that when she reported that she was unable to walk to an appointment at the rink, it was suggested that she ride her bike!
The sense of isolation is compounded by the difficulty of reaching providers with questions or symptoms of anxiety (often worse at odd hours). From the point of view of busy providers, the plan has put in place and the patient is supposed to be resting. This need for frequent reassurance and support (a clinical hallmark of the anxiety of post -concussion syndrome) is not included in the traditional plans many of us parents found. As a parent one feels completely helpless: your child is desperate for help and support and there seems to be none.
We were fortunate, through Caitlin’s agent, Brant Feldman, to be referred to the Carrick Institute at Life University in Atlanta. I knew that Dr. Carrick had successfully treated many athletes, including Sidney Crosby. I was unfamiliar with chiropractic neurology as a specialty and as a physician, was somewhat skeptical, but we had tried everything else without improvement, so we went to Atlanta.
It is hard to describe the environment adequately. There are a number of patients and their families being treated individually but simultaneously by a group of chiropractic neurologists and their residents, and by Dr. Carrick, who is hands-on and seemingly everywhere at once. The common area from which patients and their families move to different evaluation and treatment rooms is a warm, friendly and hopeful place. Staff are clearly selected and trained both for their expertise and as well as their empathy in dealing with patients with a variety of neurologic disabilities. We encountered a number of practitioners during our time there and without exception found them caring and capable. In the waiting area, families share stories and offer support; patients encourage and support one another. Family members can attend all evaluation and treatment events. For me as a physician this was very informative and reassuring.
I was impressed by the thoroughness of the evaluation. All patients have a very comprehensive history and physical exam and a detailed neurologic assessment. It is common that the thoroughness of this physical exam discloses findings not identified by providers previously seen. Patients are then given specialized neurologic evaluations including videonystagmography (VNG), which is designed to test inner ear and central motor functions, saccadometry testing visual and cognitive coordination, and computerized dynamic postural studies (CAPS), which assess the interaction of vestibular, somatosensory and visual systems.
From all of these assessments, a diagnosis of the area of injury is made and an individualized therapy program is constructed. This may include vision exercises, left brain exercises, gyrostim treatments, and cranial nerve non-invasive neuromodulation. Some of these treatments are being used by “mainstream” medical specialists such as neurologists (cranial nerve stimulation for migraine and gait disturbance in multiple sclerosis (1) and otolaryngologists (gyrostim for balance issues), but, coordination of these treatments in a single program for concussion patients is not yet widely available.
The hockey players were given on-ice, individually tailored drills. So, for several days a week, we would go to a local rink where the players would carry out their programs under the close scrutiny of staff who monitored sats and pulse rate and handed out snacks. It was wonderful to see the players re-enter a world about which they were passionate and see improvement in areas they had not imagined would ever occur.
From my direct observation of Caitlin and others, I know that this treatment works. I observed remarkable improvement in Caitlin and the other patients in the first week, subjectively in their reported symptoms, and objectively in their personality; in physical and intellectual functioning; and in VNG and CAPS data.