Awareness of Brain Injury Daily. I’m applauded with the behaviors and treatment toward my nurse friend when she needed educated healthcare professionals to help her.  Instead it was quite the opposite.  They simply did not understand traumatic brain injury and they believed she was manipulating her symptoms so she could work the hours of her choice.  If they only knew how she was suffering and what she needed to do to show up to work.  These healthcare professionals were totally in disbelief of her symptoms and never understood anything following her injury.  They began questioning her behaviors and other issues following this mild traumatic brain injury. She wasn’t even told or diagnosed with a mild traumatic brain injury until about a year following injury. As of 2009 she was still receiving botox every three months at the base of her skull because of a muscle that was either cut with surgery or injured as she struck her head against the rocks.  I believe it was the later.  The sutures to the back of her head were superficial even though it was a deep wound.  It should have been evaluated further at the time of suturing, but you can’t tell anyone how to do their job.  It’s not their head, and they don’t have to live with the consequences.  She still has a huge knotted muscle at the base of her skull where injury occurred.  Sad, but this is so true and sickening but this type of situation  happens frequently. Hence, the possibility that the muscle was injured and needed suturing or repaired, that did not happen. Only the skin was sutured. I witnessed that.

She boasted on the fact that she never had neuropsych testing.  I don’t believe and never believed that was a good thing.  She was never evaluated for cognitive difficulties, organization, judgment abilities, thinking, or anything.  It was acceptable to be a nurse and never be assessed for any difficulties following a traumatic brain injury.  What about patient safety?  At work she was obsessively organized after her TBI and at home.  She labeled everything with a label maker.  She didn’t want them to move anything at work or at home.  She had note cards for everything.  All this organization helped her and I…but her colleagues believed these were obsessive compulsive behaviors.  They are in their own right.  They just didn’t relate these changes to her brain injury.  If they were educated about brain injury they would have understood.

Since her TBI she successfully completed her Master’s Degree in Nursing and in 2007 she moved from patient care to upper management.  A much safer place for a nurse with such a devastating injury.   Fortunately, she was able to finish her degree and remove herself from patient care.  Her entire attitude changed about traumatic brain injury when this happened to her.

However, this is the same person who said “If you were motivated you would be better and back at work.”  Even though she denied this comment when I approached her, it was witnessed by several people.  So from 1991-1999 I realized she was clueless regardless of what was happening to me.  I didn’t complain.  I knew she didn’t understand. She was another statistic of uneducated healthcare professionals about TBI.

I was sad that it took a TBI (traumatic brain injury) to understand my situation. She did help me with a number of things following her brain injury and I did begin to complain when I knew she understood me. I trusted her with my complaints.  They were all genuine as evidence by my extensive endocrine work-up with hypothalamus dysfunction, growth hormone insufficiency, adrenal insufficiency, adrenal crisis, and others all not treated for 18 1/2 years. Better now though.  I will always be grateful for her help after her injury.

One specifically was to find a physician who treated autonomic instability as referred by another physician because he believed I had Ehlers-Danlos syndrome.  My vital signs were unstable, but it was just autonomic dysreflexia related to autonomic instability from brain and spinal cord injury.  This was 8 years after my injury. After her injury she started going to my appointments with me and taking notes.  Initially she liked this physician.  Than later disliked this physician because he said a prayer at the end of our visits. We welcomed prayer…it was more than most professionals offered us.  At least that is what she told us. I believe the new physician discouraged seeing him based upon things we found out years later. That’s another problem to mention later.

She found another neurologist who she believed was excellent. He was literally a rocket-scientist and a graduate of Harvard Medical School.  Formerly worked at NASA, then became an M.D.  I respected him for the field of dizziness, but there were many other underlying issues.  Unfortunately, I began seeing him…and that becomes another story and a very sad and sick one for traumatic brain injured patients!  He is no longer practicing in the Cleveland area.  Anyway, my husband and I continued to see the autonomic specialist as well.  The sad things we found out were about this new neurologist.  It really did not relate to this Autonomic Nervous system specialist!  I needed to sort through all this on my own, with a TBI!  Blessings of all my journaling.  Both my husband and I believed this specialist was one of two best physicians I had in the Cleveland, Ohio area.

Unfortunately, she struggles with her own issues.  This new neurologist believed she had Kluver-Bucy Syndrome, but this same physician took advantage of her TBI, emotionally and cognitively. That makes no sense. My husband took me to his office (with the little energy I had!) unbeknownst to my friend and I told him not to take advantage of my friend’s situation. How sad this system is.  She was vulnerable and wanted to change jobs and career paths.  She was easily persuaded by this neurologist, and could not stand by her own decisions.  Very poor judgment.  This is common in healthcare and few professionals will stand up and disagree, even when they know they are right.   I guess I was the one to rock the boat when I was working. Always the assertive person … and my TBI did not change that!  I still will say what is right.  I’ve always been that way, and I will never change…even following a TBI!

Nurse friend receives botox to back of her head.  Related to injury?  Surgical problems? Superficial sutures to back of head with injury to muscle that wasn’t repaired?  The most important injury was repaired and that was life-threatening.  In my opinion, secondary injuries were not repaired. That’s my belief and seeing what I saw I would venture to guess I would be 99.9% correct in that assumption.

So, what do you do when your best friends has a brain injury?  Do you understand each other? We understood each other after her injury for 8 years at which time her neurologist persuaded and falsely lead her to believe untruths.  She believed him.  I had no energy to discourage her from his sickening ways.  She was set in believing in him…and this is a neurologist!

I realized how our personalities have always been quite the opposite.  I understand because I was mislead by a neuropsychologist and that is another story.  Amazing how healthcare professionals that do know about brain injury take advantage of their patients!  Anyway, with these mind games with healthcare professionals plenty of deception circulated.  Through all this trustworthiness faded. I’ve been on the edge at times, but I have a strong body, strong will, and sharp mind! I have plenty of honest and trustworthy friends, and it was clear when she turned to me “If I had a choice to believe you or Dr. Soanso..I would believe him.”  I’ve known her for 21 years and I was not about ready to own her problems.  I had enough of my own.   Even though she denied this, I have 19 days of documentation while we spent in Bonaire together on a scuba diving vacation that strongly support my decision to walk away from this relationship.  I will go over those issues in later post.  It gets much deeper!…and very sick for traumatic brain injured individuals.

Early intervention may have been the key to recovery.  She was not any more motivated than I was.  Her responsibilities at home were less, so her recovery may have been helpful due to fewer responsibilities in life outside of work.  With fewer responsibilities offered her more time to rest her body, brain and mind.  So many variables with head injury, but we were alike in so many ways and different in many more.  She did send me a card telling me “don’t ever change who you are”…but I know she’s overwhelmed with my situation and she doesn’t need that.  I only want her to be the best she can be!  The less stress for her the better.

She was treated immediately because there was the obvious seizure and it was witnessed. She might have died otherwise.  Regardless of her treatment no one understood what she is going through…even her colleagues…who should understand TBI, but they don’t.  There couldn’t be a greater blessing to know her sister understands because she is an occupational therapist and deals with brain issues.  Thank goodness someone understands!

This is how complicated life is immediately following brain injury after regaining consciousness…from a rehabilitation nurse.

Now within about 12 hours of brain surgery. No one is there to observe her swallowing ability. They give her a regular diet instead of a soft diet, making it even more difficult to swallow.  Now, she’s expected to feed herself. Worse yet, anyone with a brain injury needs to be observed to see if they can swallow.  No nurse or staff stayed around.  These are important questions that traumatic brain injury patients need to be assessed for…and this is just with feeding.  Every aspect of basic living is necessary to be taught after many brain injuries.  Thank goodness it isn’t every injury.  What we do know is every injury is different, every person is different…but we treat them all the same.  Insurance have guidelines based upon the “average”.

The following are observations and interventions for nurses with patients who sustained brain injury as in this nurse friend’s situation:

• Can one sit up with being propped up
• Can one sit in chair with pillows to support torso from leaning
• Can one sit in chair with trunk balance
• How long (duration) can one sit with any of the above before symptoms of dizziness or tolerance of any type without other symptoms.
• What are the additional symptoms while sitting up and how are you treating the new symptoms?  Should the patient lay back down to alleviate symptoms.
• Never leave the patient unattended.
• Can one sip from a straw
• Can one swallow water
• Can one drink water from a cup
• Does one know how to feed herself
• Does one need to be fed
• Can one swallow soft foods
• Does one choke frequently when swallowing
• Does one choke with liquid, foods/solids, or both
• Does one know how to chew food
• Does one know how to swallow food
• Can one eat food off the plate
• Does one eat food only from one side of plate
• Can one use eating utensils
• Does one need total assistance to feed and drink
• Does one need partial assistance to feed and drink
• Does one need minimal assistance to feed and drink
• Does one have ability to feed and drink
• Independent to feed and drink

I am using this as an example so everyone can see how complex brain injury is and demonstrate that every little detail has a meaning for recovery and helps direct and promote self care.  This example focuses solely on feeding and drinking.  A basic need to sustain life.

So, it’s no wonder there are so many emotional, mental and physical complaints.  The brain is extremely complex.

So if you’re able to read this you may or may not have been at this level, but you are far better off and have come a long way in recovery!  Don’t listen to the simple and undermining insults from those who don’t understand brain injury and that includes healthcare professional negative feedback.  Who needs that anyway? Keep on moving ahead with your self rehabilitation!

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