The Invisible Injury
As concussion patients and their supporters, we've found that people with concussion and Post-Concussion Syndrome (PCS) are often on their own, for several reasons.
Reasons Why People with Concussion and PCS Feel On Their Own
Concussion and post-concussion syndrome can be diagnosed only by symptoms.
There is no type of scanning device available to the public in a clinic setting that is sensitive enough to detect diffuse axonal injuries (DAI) which is the major brain injury in a concussion, also called mild traumatic brain injury (mTBI). The brain of concussion patients appears normal on MRI and CT scans.
Concussion and PCS are often referred to as "an invisible injury," which causes a host of problems for the patient's health care, self-care, and social, school and work connections.
People forget or discount the patient's injury because they can't see the injury and often (subconsciously or otherwise) take the injury less seriously than they would another.
Additionally, patients often experience a sense that other people have a recovery date in their heads and when the injury extends beyond that date, other people stop understanding or even caring.
As Concussion Legacy Foundation described it: "While each person's recovery is unique, there is a common thread among patients. Often, those around them don't understand their suffering - even their closest friends and family." We recommend the page Coping with PCS on the Foundation website.
There exists a controversy with some doctors suggesting that long-term concussion symptoms are "psychogenic", i.e., arising from emotional or mental stress.
Patients with PCS may also have depression and post-traumatic stress disorder (PTSD) which need to be treated. However, numerous research studies of people with post-concussion syndrome do show brain abnormalities when the researchers use tools not available to the general public, such as Diffusion Tensor Imaging (DTI) or lab measurements taken from brain/spinal fluid. (Imaging)
There is no agreed upon protocol for treating concussion or PCS, and patients symptoms vary widely as well.
There are clinical trials being done on medications and new medical devices, but the treatment of PCS is a relatively new field.
Difficulty finding appropriate treatments:
The most common symptom of PCS is a headache, and there is no medication that has been developed specifically for a Post-Concussion Syndrome headache. Primary care doctors or neurologists may prescribe medications that were developed for migraines, depression, or epilepsy.
Patients sometimes don't know to ask their doctor for referrals to therapies for vision problems, balance problems, depression/anxiety, and related injuries such as whiplash.
Some doctors and sports physicians now suggest (and sometimes refer to) alternative therapies such as acupuncture, massage, or craniosacral therapy. We agree with them and recommend you explore your alternatives.
The CDC estimates that there are 3.8 million concussions in the US each year, and only 1 in 6 are diagnosed. Most people heal within a couple of weeks, but 15-30% of those diagnosed will have cognitive and/or physical symptoms that do not resolve following the first 3 months after injury. Instead, the symptoms persist, and in some cases lead to long-term disability. This condition is referred to as Post-Concussion Syndrome or PCS.