POST-CONCUSSION SYNDROME RESOURCES
WHAT IS PCS?
Post-Concussion Syndrome, or PCS, is the persistence of concussion symptoms beyond the normal course of recovery. The majority of concussion symptoms will resolve within about two weeks, and with proper recovery almost all dissipate within a month. In cases where symptoms last longer than one or two months, doctors may diagnose Post-Concussion Syndrome. Patients with PCS can experience concussion-like symptoms at rest or in response to too much physical or cognitive activity, often forcing them to withdraw from their usual physical, professional, and social lives.
IS PCS NORMAL?
Post-concussion syndrome is a relatively common complication of concussion recovery. In high school athletes diagnosed with concussion, researchers have estimated approximately 10% will develop PCS, and other estimates of other age groups and populations range from 5 to 30%. While most patients will not suffer from PCS, it is important for PCS sufferers to know they are not alone.
RISK FACTORS: WHY DO SOME PEOPLE SUFFER FROM PCS WHILE OTHERS DO NOT?
While it is difficult to predict who will suffer from PCS, research provides some clues as to who may be at more risk. Demographic variables play a role, with women and older adults being at greater risk than men and younger individuals. In addition to demographic variables, a person’s concussion and medical history can affect PCS risk. Below are risk factors that appear to increase a person's odds of developing PCS.
INTERRUPTING A LIFE: HOW SERIOUS IS PCS?
Post-Concussion Syndrome can be extremely disruptive to a patient’s life. In addition to having to constantly manage concussion symptoms, which can intensify with normal activity, long-term PCS patients often have to restructure their lives to avoid activities and situations that cause symptoms to worsen. For children, this can mean extended absences from school and removal from sports and extra-curricular activities. In severe cases, it may be necessary for a child to repeat a grade. In adults, PCS can seriously impact a patients’ personal and professional life, interfere with family life, as well as the ability to focus, communicate, and be effective at work.
ARE THERE ANY TREATMENTS FOR PCS?
Management of PCS is most often a matter of resting and allowing the brain’s natural recovery process the time to heal the damage caused by a concussion. After a period of rest, doctors may prescribe active therapies to help alleviate symptoms of PCS, but there is no single treatment that is effective in all cases.
PCS therapies identify the worst symptoms for an individual patient, and target them with specific therapies to reduce the symptoms or eliminate their cause. These therapies are especially helpful in cases where one or two symptoms simply won't go away.
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HOW CAN I HELP SOMEONE SUFFERING FROM PCS?
Patients with PCS often report feeling isolated by their illness, and it is difficult for parents, friends and any outside observers to see how disruptive PCS symptoms can be. This can often lead to observers dismissing or minimizing a patient’s symptoms, which hurts. They hear, "Are you still hurt?" or "Are you sure you're not faking to get out of school?" PCS is an invisible injury, and many patients often wish they had a more visible injury requiring crutches or a cast so that they would receive more respect.
Family and friends of a patient suffering from PCS can help by recognizing that PCS is a serious condition, and being understanding and supportive if the patient needs to socialize differently. A person with PCS may no longer be able to handle the noise or crowds of a party, but they still need to spend social time with friends, so offer a movie night or just pay them a visit and talk. Other situations may bring on more severe symptoms, so expect someone with PCS to sometimes remove themselves from a loud, bright, crowded, or otherwise over-stimulating situation. Instead of questioning if their headache is really that bad, a supportive friend will offer encouragement and remind their friend that they’ll be ready to continue their activity when they’re feeling better.
Learn more about what PCS is like by checking out our Personal Stories page, where sufferers of Post-Concussion Syndrome tell their recovery stories.
IS PCS THE SAME THING AS CTE?
No. Post-Concussion Syndrome is completely separate from other long-term consequences of brain trauma, such as Chronic Traumatic Encephalopathy (CTE). While symptoms may appear similar, the onset of PCS symptoms by definition follow a concussion. PCS does get better over time and in most cases eventually resolves completely. It is not progressive, and it is not degenerative. You will feel better, especially if you work with an experienced medical professional! Click here to learn more about CTE.
COPING WITH PCS: TIPS FROM THOSE WHO HAVE BEEN THERE
Life with Post-Concussion Syndrome (PCS) is hard. Symptoms can get in the way of anything that requires you to use your brain: school, work, social life, and hobbies all find themselves on the back burner while the brain slowly heals. Here are some tips about how to cope, from those of us that have been there.
TRUST YOURSELF: PCS IS REAL.
Not everyone is aware of Post-Concussion Syndrome – even some doctors don’t know that concussions can linger for so long. But rest assured, this is a real thing that happens to real people. The first step to recovery, after all, is admitting there is a problem. Don’t listen to the haters.
SETTLE IN FOR THE LONG HAUL.
PCS doesn’t get better tomorrow, but it does get better. Timelines for PCS are usually counted in weeks and months, not days. Along that timeline you will have good days and bad days, and often times you will make a big improvement, then plateau, and maybe even take steps backwards. Don't worry about it – eventually, the bad days will become the exception, not the rule. Try to take things day by day (even though it’s hard!), and remember that you can have a bad day, or even a bad week, and still be on the right track to recovery.
FIND A STRATEGY THAT HELPS YOU MANAGE YOUR SYMPTOMS.
Every case of Post-Concussion Syndrome is different, and what works for some won’t work for all. Find something that works for you, and stick to it. Be sure to keep trying new things, even after other strategies don't work. It's hard to know what will work until you try! Here are some things that have helped other PCS patients stay on the right track.