Right after I was hit by that drunk driver, I didn’t know what to do.
Duh! I had a concussion! And, for anyone who has ever had one, you know that having one makes thinking, organizing, and planning very difficult.
Today, a year and a half into trying to recover my life, I got mad. Not mad at the stupid kid who hit me, not mad at the effects; I got mad at the utter lack of proper diagnosis, generalized medical coordination, and treatment of concussion patients.
It can’t be that hard people! Just put all the right people together and track the progress!
So, in the spirit of one of my favorite performances, if I can help somebody – then my living [through this] has not been in vain. (Music soothes the soul – If you’d like to see the whole concert, it is here.)
Here is a list of some of the things I wish I had known about concussions right after my accident.
- Remember: When you have a concussion you need ONE doctor who cares about you and will coordinate all the different treatments (if at all possible – all in the same place – like a hospital.)
- Neurologists may all be “brain doctors,” but they are NOT all concussion specialists. You need to find a concussion specialist lead your care because only a concussion specialist can properly treat you.
- Don’t let the concussion be the afterthought. Even if you have physical problems from the incident which caused your brain trauma, don’t think that the visible problems are more important. You can see both an orthopedist and a neurologist at the same time. In fact, the sooner you treat the concussion, the better.
- Get your eyes checked. Don’t go to a regular optometrist – go to either a neuro-ophthalmologist or a board certified vision therapy optometrist who can perform a neuro-eye exam. These are different than a regular exam because they are looking for misalignment that may be missed by a regular exam.
- Get your ears checked – you may have dislodged the tiny balance crystals in your ear which affect your balance (see an ENT).
- Therapists are your best friends in this process!! So make sure you choose wisely. Whether they are vestibular therapists (for balance); physical therapists; occupational therapists; speech therapists; or vision therapists, they often understand your problems and progress better than your doctors.
- There are other ways to go than traditional western medicine – acupuncture, cranial sacral therapy, essential oils, supplementation, diet, and CBD can each play a role in your recovery.
- Water is (brain)life!
- Get yourself a comfortable hat with a brim, a pair of sunglasses(possibly two – one that covers the sides and front, and one regular pair), and a light blocking sleep mask.
- Sleep is (brain) life. The value of sleep and rest cannot be underestimated.
- Physical activity is essential to recovery – no matter how badly you feel – try to do something.
- RED FLAGS! A) If your doctor’s go-to method of treatment in medications, pills, and the like – he is probably not a good one. This shows the tendency to medicate the symptoms rather than treat the underlying issue. A good doctor will more often try to see if therapy can help you first and will respect your therapist’s findings. B) Your doctor should listen to you. He or she cannot tell you what your symptoms are – if you express concern about something and your concerns are dismissed without investigation – s/he’s probably not a good doctor.
- Concussions and other brain injuries do not follow the standard consistently upward trending graph recovery. Often, they are more like two steps forward one step back, over and over and over again.
- Concussion treatment is not the same for any two people. There is no silver bullet. The severity of the concussion AND whether you have had any brain trauma’s before this – are all huge factors in your condition.
- Count Concussions ‘Cause Concussions Count! Concussions and brain injuries have a cumulative effect. The first one may not be bad, but if you have had a number of head injuries, even a minor concussion can have an outsized effect because they are cumulative in nature.
- DON’T LET DOCTOR’S BULLY OR DISMISS YOU! Write down your concerns ahead of time, take a friend with you who knows what’s going on.
- You CAN have a concussion even if you have not hit your head on something. A concussion is caused when there is an impact on the brain – that means, if your brain is jolted violently inside your skull – hitting the walls of your skull – you can sustain a concussion. If you have sustained whiplash – you were probably hit hard enough to have your brain crash up against the inside skull. You don’t have to have smashed through the window or hit the dashboard.
- Getting better means taking it slow. If you are a go-getter, a hard-worker, a determined person, you must be careful because all of these tendencies can work against your recovery. Brain injuries are not like the injuries you can see on the outside – you can seriously impact your recovery by pushing too hard.
- BE YOUR OWN BEST ADVOCATE! Don’t blindly accept what you are being told – research best practices. Research on brain injury treatment has shown some dramatic changes in thinking in the past few years. It was once thought that you could do nothing to regenerate brain cells (you can), you won’t be able to rewire your brain (you can), and that brain injury cannot be treated past a certain point (they can.) Make sure your doctor is working with the most up-to-date treatment and research and not still treating like we are living in the 1950s.
- Keep records of everything your doctors and therapists do all in place.
Here is a list of the types of doctors and/or specialists you will most likely see.
- Your family doctor can be your coordinator OR you can have your neurologist fill this position
- Neurologist specializing in concussions.
- Neuropsychologist – yes there are psychological issues (including anxiety and depression) which can accompany concussions.
- Neuro-ophthalmologist or board certified (FCOVD or COVD) vision therapist.
- ENT-Ear, Nose and Throat specialist
- Physical therapist
- Occupational therapist
- Vestibular therapist
- Speech therapist
- Purveyors of alternative medicine – acupuncturist, cranial sacral chiropractor, herbalist
Feel free to leave your experiences or any questions below. I might not have all of the answers, but I can certainly try to find them!