Persistent Post Concussion Syndrome
Yet another acronym to add to my already long list of chronic illnesses. This one is a misnomer though. A mTBI is short for a Mild Traumatic Brain Injury. Unfortunately there really is no “mild” brain injury. When a brain is injured describing it as mild is a misnomer because a brain injury is always serious, and that is something that many people don’t realize.
My brain injury falls under the diagnosis of Persistent Post Concussion Syndrome. That means my brain never fully recovered from the concussions that it received. One concussion usually isn’t too bad. You rest up, avoid electronics, do some therapies if needed and you’re usually back to it relatively soon. But repeated concussions cause problems. In the 2015 movie “Concussion” starring Will Smith, he takes an onion and places it in a jar with some water to demonstrate to his wife how impacts to the head affect the brain. He shakes the jar once. Then twice. Then repeatedly. The onion bounces around the inside of the jar, much the same way the brain bounces around the inside of the skull. Inside the human skull the brain is not attached, it is essentially free floating in liquid, and when the head is impacted the brain has waves of force that get sent through it that freak all the neurons out. The neurons stretch and shear releasing an electrical storm that causes a cascade of effects throughout the whole body. Once is ok. The brain a little banged up, but it has the ability to recover pretty well. Twice, it’s a little more damaged and it takes a bit more effort. But the more times that the head is impacted the more the brain has micro-damage all over and now has permanent injuries that it cannot recover from. This is what my brain looks like. I have suffered through repeated concussions from sports and other accidents and now I have permanent damage to my brain. Yes, my brain is still functional, so in that sense it is mild, but in reality there is no such thing as a mild brain injury.
It took me years to be diagnosed with a mTBI. Although I treated my “final” concussion properly, I never fully recovered from it and I lived with the symptoms for years before anyone recognized the fact that I was suffering from a brain injury. Although I told several doctors about my symptoms, they were too disparate for anyone to put together a full picture of what was going on in my brain. Concussions have a huge range of symptoms that many people don’t realize. Most folks look for dizziness, nausea and perhaps some pupil dilation. What many people don’t realize is that concussions can affect nearly every aspect of your life. For me personally, I suffer through a myriad a symptoms. I have mood swings. I’m Dr. Jekyll one minute and Mr. Hyde the next. I have vision issues which have impacted my life to such a degree that I can only drive for about twenty minutes before my system becomes so overwhelmed that I become unsafe driving. I have memory recall issues. I have trouble remembering words, short term memory issues, etc. It’s extraordinarily frustrating when trying to talk to folks and I cannot recall words or names and it seems as if I’m fumbling around. My sleep is affected, either by not being able to get to sleep because I have an adrenaline dump, or I wake up multiple times throughout the night, or I can basically go into hibernation mode and still be exhausted because I don’t have a REM cycle for weeks on end. Multitasking is a thing of the past. I get cognitively overloaded so easily that my brain will start picking and choosing systems to shut down in order to prioritize more important ones. I easily get overstimulated visually and aurally. I get migraines and/headaches on a nearly daily basis. I have vestibular/balance issues that cause nausea and dizziness. I suffer through neck pain/whiplash problems. I could go on and on with my symptoms check list. Many, many body systems are affected when the brain is injured. A brain injury is something to be taken seriously, even if it is considered mild.
That being said, the brain is absolutely amazing and the plascity of the brain is something that doctors and scientists are still learning about. My brain has recovered extraordinarily well despite the years of not having been recognized as a brain injury patient. The months and years of therapy that I have gone through have helped my brain to reroute and find detours around the injured areas. It may take me longer to do things, but I can still do many of the same things I used to be able to do albeit with some modifications. Medications have helped get many symptoms under control, different tools such as tinted lenses and frequency attenuating ear plugs help calm my visual and auditory systems down, accommodations like writing down lists and therapies (vision, cognitive, physical) have helped rebuild different functions that have been lost. With all the work that has been done repeated testing has shown marked improvement in many of my deficient areas.
Ongoing research continues every day and new discoveries are being made in the field of medicine regarding brain health. Players and sports enthusiasts are becoming more and more aware of the dangers of “mild” concussions/brain injuries. Coaches are being educated in recognizing the signs and symptoms of concussions and are being held accountable for making sure that the health of their players comes first. More and more doctors are learning the signs and learning how to properly treat patients, and making sure that they are fully recovered and not being rushed back onto the field, school, or work before their brain is ready to handle the load. It is a collaborative effort between us all, doctors, patients, players, spectators, and educators to help reduce the incidences of mTBIs as well as encourage the recovery of patients.
Knowledge is power and a well informed person is liable to make much better decisions regarding their health. In the meantime it is important to understand that a mTBI is actually a MTBI. This invisible illness is not one to be taken lightly.