What is the real reason traumatic brain injury is misdiagnosed, untreated or under treated? Do we have enough rehabilitation centers in America to accommodate 1.7 million people every year? Is this a national problem or local issue? I cannot believe they missed the most obvious of all … brain injury. I was the patient with all the issues…but the healthcare professionals still expect you have it all together to let them know what’s going on. What one does know is most head injuries, strokes, and many diseases of the brain are not classic in any way. The emergency room personnel look for only the classic obvious symptoms: one sided weakness, dropping of the facial muscles, slurred speech, and others. These are not necessarily symptoms that appear with the 1.7 million traumatic brain injuries every year.
So I’m trying to figure out the most important education to be given to our healthcare providers. Here is what I do know. Only about one year before my TBI I attended a Brain Injury Conference in Newark, New Jersey. I loved my career, enjoyed everything I was doing, worked full-time as a rehabilitation registered nurse specializing in brain injury and neurological conditions, research, community projects and others. Attended the conference with hundreds of other professionals and disciplines. I sat in attendance with all those professionals while the speaker who was describing her day dealing with a mild traumatic brain injury. I listened intently, but as much as I am sad to say … I along with everyone in our group from various disciplines and facilities joked about their disbelief in the speaker’s symptoms. The speaker, a traumatic brain injury survivor had such an array of symptoms I too found it unbelievable but I knew why I felt that way, and I did not share my feelings with anyone else. Worse yet, I found all of my colleagues in disbelief. They too may have been justified in how they felt, because we all have injuries to varying degrees in our life. No one shared any personal experiences, so I don’t know the answer.
First, I listened to what other professionals had to say and they just did not believe anything she was saying…but I did believe she was an excellent speaker and effective. I won’t go into specifics as I can’t answer for others actions and beliefs. Second, I also questioned the validity of her symptoms but maybe for very different reasons. I want to explain why I found it unusual. What others did not know about me.
I know why I found it unbelievable. I had many significant injuries before the one in 1991 and I recovered from all of them. A few included but not limited to many concussions from being an active child; I was 1 of 9 to survive carbon-monoxide poisoning at the age of 10; at age 16 I was assaulted in back of head (mistaken identity!); and at age 32 head-on car collision … and a few things not worth mentioning. I did not have any lasting consequences from any of the injuries. In retrospect, maybe brief symptoms but nothing that changed my life.
I truly did not understand why or how the speaker (TBI survivor) could have all these symptoms and all the problems. I knew what I had been through and did not have any problems. Not even one symptom mentioned! I just did not understand it! I GOT IT NOW, and would never think as I once did! I truly understand now…way too well now. I wonder if that is part of the reason for the lack of interest, lack of education, lack of understanding, lack of research, lack of treatment, and possibly the lack of self-awareness!
On the other hand, I had a young female TBI patient who made specific complaints about a respiratory therapist. I never had problems believing or listening to my patients. I had no reason to question her validity of what I was being told. When I brought this up to my colleagues I was told “She has a brain injury”. I was the only RN scheduled to be on at midnight this particular night when the respiratory therapist was going to visit with this young beautiful woman. Eventually, other nurses listened to what I was telling them and we staffed accordingly. There was a plan in place to protect this young woman. At exactly midnight he entered the rehabilitation unit and went directly to her room. He was followed by staff while I contacted supervision. Yes, he was fired immediately. If I didn’t listen and wasn’t assertive…no one else believed her simply because she had a brain injury. Things could have even been worse than what she already told me. Nurses have to document to protect the system, not the patient. I was told to change my documentation. I did not and would not. Most do change the documentation, they need the job. So did I, but I stand by what is right as a patient advocate. This was not an isolated incident at this institution. So, maybe this is the reason to placing blame when a 13 year old fell out the window to his death from the 5th floor rehabilitation unit. I was not working at the time of the incident…but when are nurses responsible for the construction of the building?
When I was injured in 1991 and I gave a proper medical history of my injuries I was told “That happens to your patients!” I thought a history was to help with treatment. I now believe giving a proper history was a hinderance to receiving prompt and proper medical care. That complicated with the cover-up of medical errors instead of just helping and correcting the wrong errors. There is greater awareness to TBI than 2 decades ago, but there was plenty out there 20 years ago! I was working in head injury-neurology rehabilitation and there was not the lack of knowledge…maybe more lack of dedication to those that worked in these areas. Knowledge was limited compared today’s standards, but this was/is Level 1 Trauma Center.
Maybe these issues are a much bigger picture than traumatic brain injury. Maybe the start of resolving the underlying problems are finding out why and how many nurses and healthcare professionals are satisfied with their jobs? If they are not satisfied they are not willing to attend conferences and do further research. Hence, everyone suffers from the individual, to families, to communities.
No one wins with Traumatic Brain Injury, but we need to pursue this avenue so Ongoing Rehabilitation is available to all patients so recovery is possible. There are lifelong consequences with periods of adjustment, adaptation, re-adjustment, alterations to life chapter circumstances, adapting once again … it’s a vicious cycle and forever changing. Patients should be able to re-enter rehabilitation when they need help for specific issues. Instead, the system uses all the days approved by insurance plans at the onset of injury. Most TBI survivors don’t know the real issues until they are at home and need to live “as they once did”. Symptoms remain unpredictable. They truly do not know what they are dealing with until they are at home.
Now, my friends are forgetting things and they get upset over forgetting “car keys” or one item. What a delicate issue for them! Forgetting? I have mastered compensating with cognition and tasks, it’s become routine. Partly owing to accepting forgetfulness and otherwise the brain making excellent connections to remember. So as time goes by and my peers get upset over the simplest things…I wonder “multiply forgetting one thing times hundreds in one day” and wonder if they could cope like TBI survivors…but as they age they are less tolerate to the “forgetting issues and are far worse off than TBI survivors. Overtime, you compensate for things that as one ages they begin to deteriorate. If you keep your brain active and challenging, you will be better off than your peers!
I feel compelled to write this specific article because it is Brain Injury Awareness Month – March 2012. Anywhere, Anytime, Anyone. Brain Injury is the one minority group anyone can join in less than a fraction of a second. I want to help prevent others from becoming part of this minority group through education. This is not an individual injury. It changes the family forever. Most friends leave and others who are true friends stay.
I married my best-friend and he’s still by my side 40 years later. I give him so much credit for being here for me, but than again he reminds me I have never been and never will be a needy person. He reminds me that if I had been a complainer, I would have received treatment. My children also lost the active-mother they once knew, but the same in heart, mind and soul. A mother with profound love, hugs, and kisses remained after injury. As far as most others, they really don’t count.
So if the healthcare professionals do not believe the patient, how do they expect family, friends, and others to become educated, be supportive, and help with this devastating injury?
Does job satisfactions equal patient satisfaction?
- TBI: A Department of Defense Special Report (offthebase.wordpress.com)
- Healing TBI: A Doctor Turned Patient Gives Perspective (offthebase.wordpress.com)
- Incoming! Traumatic Brain Injury Month (rjwh617dotcom.wordpress.com)
- Could this Nightmare with Traumatic Brain Injury be Ending? (braininjuryselfrehabilitation.com)
- Struggling for Survival After Subarachnoid Hemorrhage and Traumatic Brain Injury (braininjuryselfrehabilitation.com)
- Mild Brain Injury: Implications for Independence (braininjuryselfrehabilitation.com)
- In All the Wrong Places for Healthcare or Was It Just All the Wrong Professionals After TBI (traumatic brain injury)? (braininjuryselfrehabilitation.com)