Do patients with concussion, also known as mild TBI, receive adequate follow-up care? No. Absolutely not. About 3 million Americans have some symptoms due to a concussion.
Fewer than half of these patients are scheduled to receive follow up care. Even patients with multiple concussion do not receive adequate care, in part because the name “mild Traumatic Brain Injury” is misleading; there is nothing “mild” about having daily headaches, dizziness, nausea, difficulty doing simple tasks such as typing, cooking, or driving as well as not being able to read, understand, or manage your daily affairs. But why is this?
Unfortunately, there are no guidelines on “standard of care” for concussion the same way we have standards on how to care for patients with diabetes, heart failure, multiple sclerosis, or hypertension.
Moreover, physicians do not have any instructions on how to care for patients who often have multiple interacting symptoms such as irritability, insomnia, poor attention, and inability to organize their daily tasks.
Those patients who do show up for regular follow-up care often get fragmented treatment by specialists who focus only one aspect of their symptoms (such as insomnia or attention – not taking full responsibility for all of their problems).
Until we have standard guidelines and multi-disciplinary centers (such as our brain center) throughout the country, patients need to take an active role in caring for themselves.
They need to appreciate that their lingering symptoms can be treated and should insist on getting effective interventions that will end their misery – even if this means seeing multiple specialists and multiple treatment programs. They should not accept their symptoms as their new “norm.” They should fight to get back to their usual self.