Excerpted from “Who’s Crazy Now?”
By Todd Clements M.D. & Sue Rueb

Thousands of people suffering from brain injuries are not diagnosed or misdiagnosed each year in this country.  The misdiagnosis often lasts for years or a lifetime.  Many victims of brain trauma are told they have a psychological disorder and are forced to live in psychiatric facilities.  Others end up spending years in jail or prison due to their inability to follow the laws of the land.  Sadly, many people who cry out that they have a brain injury are accused of feigning their symptoms.

Why do we have such a difficult time recognizing brain injury in our society today?  We are living in a time of super advanced technology that can find a virus in the body that’s way too small for the human eye to see.  We can not only find the virus but type and classify it as well.  The brain injured in this country often do not receive the attention nor treatment that they deserve.  I think there are several reasons for this.

People with brain injuries often look normal.

If there’s a gaping hole in the skull with brains leaking out from a gunshot wound or an automobile crash that’s a different story, but most people with brain injuries aren’t that obvious.  Many of them look just like you and I.
While our skulls are rock hard, our brain tissue is the consistency of soft butter, or tofu (it is not rubbery like people often assume).  This puts the brain in a very vulnerable position for injury—especially from bouncing back and forth against the inside of the skull.  The brain can be damaged very seriously, yet the skull can be totally intact.  Just because the outside of the head looks fine doesn’t mean the inside is.

“But Doc, I wasn’t knocked out.”

How many times have I heard that one as I’m showing a patient his injury on a brain scan?  Remember Phineas Gage?  He never lost consciousness either.  Getting knocked out has to do more with where the injury occurs than how serious it is.  An injury in the brain stem will affect consciousness more than one in the frontal lobe.  Many physicians still do not realize this.  I was recently invited to speak to a brain injury support group and the physician in charge of the meeting who introduced me to several of the group members would say things like, “Dr. Clements this is Sharon, she was knocked out for 7 minutes.  This is Harry, he lost consciousness for 30 minutes.”  Each person in the group rated their severity (like a badge of honor) on how long they had endured unconsciousness.  Family members, doctors, and even victims themselves may downplay the notion of a head injury if there was no loss of consciousness.
Sometimes a brain injury can be sustained without your head even making impact.  Vehicle accidents can accelerate and decelerate the head very quickly, which causes the brain to bounce off of the inside of the skull.  I once saw a lady who sustained a massive brain injury in a car wreck, but her insurance was refusing to take responsibility for any of her medical bills for brain rehab, because the police report stated there was no evidence that the lady’s head actually made contact with the windshield of her car.  The insurance representative could not comprehend how this lady had a head injury and insinuated she was faking.  He did however acknowledge that babies can die from bleeding in the brain in “shaken baby syndrome” even though their heads do not hit anything.

We’re not looking.

Psychiatrists and Neurologists are the two primary medical specialties who treat brain disorders.  My specialty—psychiatry—I must ashamedly admit, are the only medical specialists who don’t regularly look at the organ we treat.  We diagnose brain problems based strictly on symptoms and behaviors.  Since many brain injury symptoms overlap with psychiatric disorders like schizophrenia and bipolar, we routinely diagnose those disorders and start treating without looking any further.

Patients like Kristin often start off on one psychiatric medicine and then when the symptoms don’t improve we add another, then another, then another.  It’s not unusual to see a brain injured patient come in on 5 or 6 different medications.  If there’s no improvement after a while these patients are given a diagnosis of personality disorder, which is basically saying, “It’s your own fault you’re not getting better, not mine.”
Psychiatry is rarely involved with finding the root cause of a problem.  We tend to just try to calm the symptoms and then say it’s genetic, preferring to blame everything on a “crazy uncle.”

Our tests are incomplete.

Neurologists are much better at looking at the brain.  CT scans (Computed Tomography) and MRI’s (Magnetic Resonance Imaging) are the mainstays in neuroimaging to look at the brain.  These scans look at the brain’s anatomy.  They can identify bleeding, tumors, and even areas of dead and injured tissue in the brain.  One problem is that people with mild to moderate brain injuries often have totally normal CT’s or MRI’s (sometimes they can be normal even in severe injuries).  What does the doctor do then?

I’ve seen hundreds of patients from all types of doctors who are dealing with this very issue.  A brain injury is suspected, but the scans were normal.  In fact, this happened with Kristin.  Some physicians will go on with further testing (which we will talk about in the upcoming chapter) others will deem it a behavior or psychiatric problem and refer that patient to the psychiatrist with the medical record signed off saying, “No findings of organic brain damage.”  Go back to the “We’re not looking” section to see what happens then.

Brain injured people are not good advocates for themselves.

This is hardly their fault.  Brain injured people rarely have the insight or capacities to study the internet and medical journals in order to correctly diagnose themselves.  Thankfully, Kristin has parents who were able and willing to spend countless hours advocating on her behalf.  I’ve met very few other brain injured patients who’ve been this blessed.

A few years ago I recommended that a head injured patient (from a motorcycle incident) apply for disability because of his inability to sustain work.  The state insisted that he be evaluated by one of their physicians, which is not unusual.  I was surprised when he later came in and brought me his rejection letter.  As I was reading over the medical report they stated his main complaints were anxiety and not sleeping well, there was no mention of prior brain injury.  The physician obviously didn’t read any of the medical report I had sent.  When I asked him, “Did you tell them about your brain injury?”

His reply was, “No doc, and I’m really disappointed that she (the state physician) never asked me about it one time.”
“Why didn’t you tell her?” I questioned him.
“I guess I forgot to,” was his best reply.
I’ve always remembered his situation because it shows how physicians often aren’t looking for or considering brain injury and patients don’t always explain it clearly.

Brain injured patients are often non-compliant with treatments.

If your thinking, reasoning, memory, and emotional control are compromised how compliant would you be with following doctors orders and living a healthy lifestyle?  People with brain injuries often don’t take their medications regularly, especially if they don’t understand what their purpose is.  They might not even realize that they do need help.  Brain injured people often don’t show up to their scheduled doctors’ appointments.  They may forget they had an appointment, not realize it is important to go, or even be paranoid of physicians.

People with brain injuries frequently have poor diets.  This is not surprising in someone with impulse control problems who gets hungry and is surrounded by food.  Drug and alcohol abuse is common after a brain injury.  Here again, someone with poor impulse control and reasoning skills who is offered drugs will have a strong tendency to take them.

Brain injured people frequently live life as it comes.  Their mind operates in the here and now—not in the future or the past.  They may stay up all night then sleep the whole next day.  If they want to smoke a cigarette they will likely light one up and never have a thought about lung cancer.  These actions may send a message to the doctor that the patient doesn’t care about their own life.  Sometimes the doctor’s attitude can be—if they don’t care then why should I?  This is probably done more on a subconscious level that a conscious one.  I’ve learned that when I see this type of behavior that there is probably something more going on with this patient that I haven’t discovered yet.

Brain Injury patients are likely to have a poor support system.

Many brain injured patients are estranged from their families.  Some choose to walk away from their families, like Kristin did, but in my practice I’ve seen more experiences where the families distance themselves from the brain injured person.  Their inappropriate behaviors are deemed “character” or “moral” weaknesses.  Concerned family members will often start out trying to help a brain injured person, but after a while when that person can’t hold a job or function in society and refuses to heed the advice of family members the withdrawal of support follows.

Medicare doesn’t care.

Many brain injured patients end up in the Medicare system due to their disabilities.  Medicare’s goal is not to get you well.  It’s a huge bureaucracy run by government bureaucrats who don’t know their constituents.  You are simply a number to them.  Their goal is to take care of you in the cheapest way possible—so they can make their budgets and keep their jobs.  This may mean that you don’t get the diagnostic testing that you need to determine a brain injury.
Don’t get me wrong there are some very good physicians, nurses, and healthcare professionals working with Medicare patients.  They too are very dismayed with the system, but they have been hamstrung and have very little authority or power to change it.  If you are in the Medicare system my advice to you is find a good doctor who will advocate strongly for your care.

Patients forget about injuries.

I’ve had patients tell me they never had any type of head injury before and then later call me back and explain how they totally forgot about an injury in their childhood or teen years—sometimes the nature of these injuries were very serious.  I’ve had other people recount episodes where they’ve hit their head and then gone to the emergency room.  They’ll say the doctors told me that I was fine and had no injury.  Sometimes the extent of the testing done in these instances was merely checking reflexes and pupils.  Past injuries can be easy to forget, especially if they weren’t deemed serious at the time.