Until August 2018 I thought a concussion was:
- A blow to the head from car accidents or athletics
- An easy 1 -2 week recovery
- Doctors knew how to help
Then I had a concussion and my world changed. What I’ve learned about concussions isn’t pretty or fun and however un-fun this post is, what I’ve learned may surprise you and might save you if you bang your noggin.
Since August 2018 here are the top 10 things we’ve learned:
1. It is a significant blow to the head from all sorts of ways. There are many categories and types of concussions. The primary criteria for each category of concussion is determined by the self reported moments immediately after the blow, I.E. did you lose consciousness, for how long, could you stand on your own, could you go back to work, etc.
The categories assigned are not based on any standard medical test. Very often symptoms might not show up for several weeks and if the first visit to a doctor or an emergency room is delayed, the official grade level is dropped, regardless of the over all symptoms.
Because the grade level is based on anecdotal criteria and may not reflect the patient’s overall concussion experience but may determine the aftercare allowed by insurance companies.
2. Sometimes there is a 1-2 week window for recovery but often it takes much much longer to recover. A recent study from a city emergency room discovered that 40% of concussion patients that went through their hospital were still having concussive symptoms one year after their injury —40%– after a year (See below).
3. Very few doctors, including neurologists, know how to help. Concussions are the wild west of medicine.
My concussion specialist, a highly reputable physician with an impressive pedigree and world class athletes as patients, told me that treatment is based on symptoms and crossed fingers.
My neurologist, also a highly thought of doctor with an impressive pedigree who also treats world class footballers and soldiers, told me that just about everything they guess about concussions comes from studies on stroke victims.
4. Routine hospital tests, MRI/Cat scans, do not show concussion damage, so early treatment is often misdiagnosed.
5. While concussions are now being studied, there are only 2 longitudinal studies being done in the world and they focus on athletes and the military.
Even though the fastest growing group of of non-military concussion victims are women over 60 —NO STUDY EVEN INCLUDES THIS GROUP.
6. Unless you are near a really good teaching hospital, and maybe even if you are, if you have a serious concussion you are on your own.
7. Concussions can be life altering. The list of symptoms; memory loss, trouble with memory, light and sound sensitivity, recurring Migraines (often constant migraines). vertigo, loss of fine motor skills, loss of reading and thinking skills, inability tolerate large and open places (like the outside or your living room), inability to follow two step directions, inability to follow a conversation, crazy uncontrollable emotions, anxiety and the list goes on and on.
The most basic daily chores like making morning coffee become a challenge equal to high school calculus.
8. Dark scary thoughts that don’t match how you feel are natural. Concussion victims often have suicidal or self-harming thoughts that seem to come out of nowhere and don’t match with their personal experience. Most doctors don’t know that these thoughts are the brain’s way of saying “ouch” , that they will burst into the mind and pass, so they put their patients into pysch units or use heavy medications unnecessarily rather than teaching them how to manage this sort of pain.
9. However, real serious situational depression and anxiety follow the concussion victim everywhere. The loss is enormous and so is the daily grief.
10. Healing is a grizzly process for the caretaker. It is terrifying for them to watch their loved one stumble about, wracked with pain, unable to do what they used to do. Their loved one isn’t who they used to be and the care taker is left taking care of a very needy stranger with a familiar face. Paying work stops for the patient, grades fall/school work is impossible, friends drop away, medical bills mount, and home can become a stress packed zone without relief.
All-in-all, concussions are not the easy peasy wound I thought they were.
There is help, but it comes mostly from other concussions/TBI survivors.
People do get better and heal, but there is no expected time-line.
The “how we get better” part will come in Part 2. and elieve me you can get better.
As Always,
Beth
Irish Medical Journal, September 2019 {http://imj.ie/wp-content/uploads/2019/09/Telephone-Follow-Up-of-Mild-Traumatic-Brain-Injury.pdf}