My New Vocabulary

Unless you work in the medical field or have experienced something as traumatic as we have you probably have no idea, like me, that there was so many “words” out there to describe and prognosis a brain injury.  I began to live and breathe my new found vocabulary while being completely consumed by things like Glasgow Coma Scale, posturing, shearing among a few.  The worst thing in the world to do at a time like this is to start “googling” about these words because there’s nothing very positive to read.  The first time I ever heard the term GCS (Glasgow Coma Scale) was on the paramedics’ report that my brother and I had read shortly after I arrived at the hospital.  Shawn’s GCS was 3, we thought that maybe a 3 was a good thing and that the lower the better, nothing to base this on other then trying to stay positive.  Well I found out when Shawn’s sisters arrived at the hospital and read the paramedics’ report that it was a very bad thing.  Glasgow Coma Scale is what EMS and doctors to access someone’s level of consciousness after a head injury use.  The score you receive is basically a good indication of how severe the brain injury is and also a basis to determine what type of outcome to expect.  The scale ranges from 3 (deep coma or death) to 15 (fully awake person).   The scale looks like this:

Feature	Scale	Score
Eye Opening	Spontaneously opens eyes	4
	Opens eyes in response to voice	3
	Opens eyes in response to pain	2
	Does not open eyes	1
Verbal Response	Orientated	5
	Confused Conversation	4
	Words (inappropriate)	3
	Sounds (incomprehensible)	2
	Makes no sound	1
Best Motor Response	Obey Commands	6
	Localize to painful stimuli	5
	Flexion to painful stimuli          - normal	4
	- abnormal	3
	Extends to painful stimuli	2
	No movement	1

Shawn’s GCS of 3 was based on a 1 in each category.  The severity is based on how you score.  A severe brain injury is a GCS of less then 8, Moderate is 9-12 and Minor is over 13.   So even though his nurses and doctors and my own family tried to persuade me from “googling” all of this, I still did.  I wish I had listened and taken their advice because when you have so much uncertainty in your life and the person who you love so much is lying there unconscious the last thing you want to read about is all the worst-case scenarios.  On top of having to understand what all this meant for Shawn’s future, I had to cope with all the test results and diagnosis that we were getting.  Even though there was some conflicting opinions they all agreed his deficits would be severe and long term. 

It was sometime in the afternoon that next day, after his accident, that Kathy, Karen and I meet with the neuro surgeon that came to visit me in the early hours to tell me about the “2 small brain bleeds”.  The brain bleeds were in the left side basal ganglia and the right side thalamus and the CAT scan also showed as described at the bottom of the report “ the constellation of findings are in keeping with significant shear injury”.    Shearing, as I was to learn is a Diffuse Axonal Injury and because of the nature of this type of injury it is very difficult to determine to what extend of brain injury Shawn would have.  We also had the unknown of whether the time he went into cardiac arrest on the operating table caused lack of oxygen to the brain, known as Hypoxia.  Diffuse Axonal Injury is a very common brain injury that happens, especially when it is something so traumatic like Shawn’s accident because the brain gets thrown around in the skull.  The medical definition of DAI explains that the major cause of damage is destruction to the axons, which are the neuro processes that allow one neuron to communicate with another.  The connections between the neurons get stretched, damaged and completely broken.  One of the articles that I had read about this type of injury said that 90% will never wake up and the other 10% with have a very poor prognosis.  So like I said and what others warned me against, don’t go looking for answers on the internet, it will only upset you.  I watched a movie once that used this analogy to explain what happened with Shawn’s brain… Imagine that neurons are cars and the axons are the highway, suddenly there has been a major accident on the highway and everything has come to a stand still.  Within time some of the cars (neurons) will not be affected and can continue on home, others will be able to find alternate routes home which may be quick or may be long depending on how far they need to go, and others will just never make it home.  Now Shawn’s CAT scan did show bruising in pretty much most of the brain but the main concern and most of the discussions we had with doctors were around the Diffuse Axonal and the bleeds in the Basal Ganglia and the Thalamus.  So the Basal Ganglia is located in what is considered the “deep” brain area and its' deterioration is what is responsible for Parkinson disease primarily.  Its’ function is movement coordination and voluntary movement (stopping and starting).  So a lot of times with Parkinson patients you can see them have tremors and this is because this area has been affected.  I am in no way trying to sound like I have any medical background, just basically going on what I was told and have read over the years.  I know the basal ganglia have many other functions but this is the main one and the one that has impacted Shawn’s life.  The thalamus is located in the mid/fore brain and is kind of like the mailbox of the brain.  It plays a large part in relaying messages to the cerebral cortex and coordinating motor responses.  It just seemed like a devastating blow after devastating blow anytime we received new information from the doctors.  When we were given all this information there was still one test that had yet to be done and that was an MRI.  The CAT scan can show the doctors what type of injury there is to the brain but it doesn’t show how deep of a bleed it is.  So even though we had all this information we still didn’t know if the bleeds and injury to his brain had penetrated deep enough to know if “the lights may be on but never no one was ever going to be home”.  It was probably close to a week before the MRI was even performed and I barely ate or slept waiting for that very important piece of the puzzle. 

Posturing is something so deceiving because when you see it happening it almost resembles “purposeful movement” as I learned to refer to it.  Everything was based around “purposeful movement” and sometimes I wanted to rip the eyes out of those nurses who would want to make sure that I knew it was NOT purposeful movement.  So posturing is movement that you definitely do not want to see after a head injury.  Shawn was posturing for a few days after his accident and it terrified me because that meant that the messages to his brain were short-circuiting.  I am not sure how common it is to happen but by day 4 and we were seeing no signs of it anymore I was relieved, for the time being.  It you look up posturing and the definition, it once again talks about the presence of posturing being an indication of severe brain injury.  It states, “It is an involuntary flexion or extension of the arm and/or legs, indicating severe brain injury”.  However, once the posturing started to disappear, he started to slightly withdraw from pain stimuli even though he was still in a medically induced coma.  I remember Kathy, Karen and I were about to call it a night and head back to the hotel when an excited nurse called us back into Shawn’s room.  It was slight but he withdrew from pain stimuli, they stick a sharp pencil into his finger, sounds mean I know.  We were so happy and it felt so promising that I actually ate a full meal for the first time in days!! 

I really wanted to try and stay away from sounding so medical especially because I don’t want to take away from all the emotion and anxiety surrounding that time.  However, in order to really grasp what we were dealing with, I want to paint an exact imagine of how serious this all was.  To this day, many people that weren’t part of our lives or around us that much, have no sense or idea of what it was like.  I am a pretty strong person and not an overly outward emotional person, which is different then not being emotional.  I just didn’t share a lot and usually kept my feelings private but back then I was a mess.  I could not carry on a conversation or fill family and friends in without bawling.  I pretty much left it up to family to talk to everyone and keep them updated because I was just so devastated and completely emotionally a wreck.  I am not sure how long I was in that state but it seemed like awhile but realistically maybe a week.  Once I picked myself up and pulled myself together I knew that we had a long road ahead and if we were going to get through this I needed to focus on one thing, and that was thinking positively and being there for Shawn no matter what happened.