Post-Concussion Syndrome: A Physician-Mother’s Perspective
One treatment response we all learned to recognize was that, as the week progressed, in the waiting room, one by one the patients took off their dark glasses as their light sensitivity resolved! Depending on the particular situation, patients might stay a second week or return at intervals.
As with any serious illness or injury, the rehabilitation process continues at home with exercises tailored for the patient, and which may be adjusted from time to time by the Carrick team or Carrick-trained practitioners closer to home. And perhaps one of the most important aspects of this comprehensive treatment program is the accessibility of the staff and Dr. Carrick. They are available literally 24/7/365 for any questions or concerns. Once you are in the program, you are a part of their family forever, if you need them. This is a powerful gift to a sufferer and runs counter to the way much of medicine is practiced today.
The treatment at Carrick Institute makes it possible for patients to return to the productive life they were leading at the time of their concussion and, as importantly, with a sense that they have some control over their lives. Some have returned to hockey, able to play but chastened by the understanding of what they are risking. To our relief, Caitlin decided to retire in 2014 prior to the beginning of the Olympic training camp for Sochi. She successfully graduated from law school, passed the bar examination and is employed as a lawyer in Chicago. Another player finished her master’s degree in biomedical engineering and is applying to PhD programs while working in a research lab. Still another returned to her college hockey career, did well on the medical college admission tests and is applying to medical school. There are many other such stories, these belong to some with whom we took this journey.
All the patients (and their families) with whom I have been privileged to share Carrick Care identify this sharing with others as a profoundly inspiring experience. Feeling their own improvement in symptoms and capabilities and observing that in others gave patients a sense of hope, of optimism about their future and of their ability to regain control of their life. This, of course, gives them the courage to continue the work of getting well. Repeatedly I have heard patients say that having a concussion, as difficult as it was, made them better people, more empathetic and resilient.
Powerful treatments not widely available
So why is this powerful treatment approach not more widely available? There are several factors that I believe have hindered its broader use to date and which I would like to address.
First, there is the criticism that it is unproven, in the sense that no gold standard, controlled randomized studies have been done to prove efficacy. Given the fact that every concussion is really different from every other and the still substantial gaps in our knowledge of brain function and response to injury, it is hard to construct a sufficiently powered study of comparable treatment groups. However, where it is difficult to find appropriate comparison groups, it is possible to employ a validated “within subject” design where each individual serves as his/her own control before and after treatment. Recently in an NCI clinical trials program (2), Dr. Carrick’s group used a within subject structured study to evaluate the responses of veterans with PTSD to the vestibular rehabilitation program Caitlin and others have experienced. They reported statistically significant improvement in the CAPS (Clinician administered DSM-IV PTSD Score) at one week and at three months post treatment. Such studies can build acceptance of the treatment and give impetus to expanding what appears to be an effective therapy (currently not covered by insurance) to others suffering from traumatic brain injury.
A second line of criticism is that the successes are merely a placebo response. In the interests of clarity we need to use such descriptive terms accurately. A recent article in the New England Journal of Medicine (3) reminds us that, although today the term “placebo” is often used perjoratively, it is in fact a misrepresentation of its effects. Placebo effects are defined as “improvements in patients’ symptoms attributable to their participation in the therapeutic encounter.” They “rely on complex neurobiologic mechanisms involving neurotransmitters (e.g., endorphins, cannabinoids, and dopamine) and activation of specific, quantifiable and relevant areas of the brain (e.g., prefrontal cortex, anterior insula, rostral anterior cingulate cortex and amygdala.)” and “many common medications also act through these pathways.”
All therapeutic endeavors rely for success to some degree on the patient’s belief that the intervention will help, that the practitioner has a skill that will be used for his/her benefit. There is an extensive literature documenting the positive relationship between the patient’s optimism and the outcome of therapy in treatments from cardiac surgery to psychotherapy, as well as the negative outcomes when the therapeutic relationship has not been properly developed. As a surgeon I understood that the fundamental first step in caring for a patient, in allowing them to move through the anxiety of illness and confront the specter of surgery, was to engage the patient in the expected goal of a good outcome. But as with surgical patients, post-concussion patients still need the treatment! There is no doubt that the caring environment of the Carrick Institute Clinic exemplifies the ideal of the therapeutic encounter, which I am saying as a physician is a necessary part of good treatment and a critical element in working toward optimal outcomes.
It is interesting to consider the biological underpinnings of why an optimistic attitude might facilitate a good outcome. A body of research has suggested that humans possess an “optimism bias” (4). Sharot et al. (5,6) tested this hypothesis in a study combining a validated questionnaire combined with functional MRI evaluations. They found “that an optimism bias is maintained in the face of disconfirming evidence because people update their beliefs more in response to positive information about the future than to negative information about the future.” Specifically, their MRI studies showed that beliefs in a positive outcome are resistant to change even when subjects are given negative information. “This selectivity is mediated by a failure of frontal lobe regions to code errors in prediction that would reduce positive expectations. When optimistic individuals are confronted with unexpected statistics about the likelihood of encountering negative events, their right inferior frontal gyrus exhibits reduced coding of information that calls for a negative update.” They and others have suggested that this optimism bias may have been a necessary component of the evolutionary success of humans. Optimism may facilitate explorative behavior and healthy activities and reduce stress and anxiety. Of interest is the fact that the optimism bias has been shown to be lacking in depressed individuals. As practitioners we exploit this natural bias in developing a positive therapeutic relationship and securing a successful outcome.
