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.