Maria Romanas, MD, PhD, writes about living with the symptoms of traumatic brain injury. Dr Romans is a pathologist at the VA Medical Center in Kansas City.
My story is an example of what it takes to salvage a life and career from severe traumatic brain injury (TBI). It took me 13 years to diagnose myself with a brain injury and 16 more years to find the cognitive rehabilitation I needed to maximize my functional recovery. For the most part, I did this on my own. I received little to no guidance from the medical community. Unfortunately, the standard of medical practice has really not changed much in 30 years. That needs to change.
I suffered a severe brain injury at age 18 in 1984 (roll-over motor vehicle accident, open fracture of the left temporal skull, emergent neurosurgery, 3-day coma, 30-minute retrograde amnesia, and 7-day post-traumatic amnesia). I was walking and talking at discharge. Other than plastic surgery, no follow-up or rehab was arranged. My mother was simply told, “Push her gently.”
I knew about the skull fracture, but no one ever told me that I had a brain injury. I slept almost continually for a couple months and took daily naps for the next year, but I and everyone around me thought I had escaped “unscathed.” I went on to get a BA in chemistry with a 4.0 grade point average and completed an MD/PhD program on full academic scholarship despite getting married and giving birth to three sons during those years.
I was “superwoman” but one with unexpected “glitches” that would puzzle my PhD mentors and attending physicians: “But you are so smart. Why would you have trouble with that?” For 8 years I was surrounded by top-notch neuroscientists and physicians who never made the connection between my glitches and a brain injury.
No one suspected that I have moderate to severe impairments in attention, memory, and executive functioning. Why would they? Brain injury is supposed to make someone stupid or act strangely, right?
Most did not even know about my accident. I thought it was a non-issue and rarely talked about it. Even the ones who knew that I had a skull fracture could not have diagnosed me with a chronic brain injury because they had never learned about it. Even now, most physicians do not have the knowledge necessary to diagnose me.
A few months before I graduated, I read a chapter titled “The Long-Term Consequences of Brain Injury” and recognized myself. I finally understood that my “glitches” were due to permanent cognitive impairments from a chronic brain injury, but no one believed me, not even my own physician.
During my last month of med school, in 1997, I was on neurosurgery and noticed that TBI patients were discharged with an appointment with a rehab physician, George Varghese, MD, so I arranged a meeting with him. He confirmed that I must have permanent cognitive deficits given the severity of my injury, but he also said that there was not much that could be done because I had already compensated so well on my own.
I’ve had several career setbacks since then. Each step along the way required more executive functioning and showed up my deficits more, particularly at transition points.
My PhD research was in the free radical mechanisms involved in strokes and brain injuries. I planned on being a neurologist, but I resigned my internship after 7 months due to exhaustion. Two years later, I started a pathology residency, chosen because it did not require working overnights. Despite a difficult first year, I ended up as the chief resident and fellow. My transition to the working world was even more difficult, but that’s another story in itself.
I have been a pathologist at the Kansas City VA medical center since 2007. About 4 years ago, I started getting consistently overwhelmed with the ever-increasing workload, coupled with the challenges of raising three teenage sons. I started asking, “Can I do this job anymore?” I decided to focus on my TBI to see if anything could be done to improve my work capacity. I went to a neurologist, a psychiatrist, and a rehab physician, none of whom provided me specific guidance.
In August 2012 I had a 3-day evaluation at the Mayo Brain Rehabilitation Clinic, where I was told that I was trying to do an eight-cylinder job with six cylinders firing. They suggested that I meet once per week with a speech-language pathologist as a job coach. She did help me to increase my efficiency at work, but it was not enough. I was still unable to take leave and my health and primary relationships were suffering. In March 2013 I finally decided, “I don’t even want to do this job anymore.”
The Ideal Form of Cognitive Rehab
As a last ditch effort, I took a leave of absence and went through an 8-week intensive holistic cognitive rehabilitation program (HCR) with an expert neuropsychologist, Larry Schutz, PhD. He trained me how to use my conscious mind to bypass the networks that no longer work properly.
I still have cognitive impairments, but I am able to use my conscious mind to follow strategies that keep them from causing disability. I can overcome attention deficit by rallying effort without arousal. I can overcome my memory deficits by writing everything down and referencing it so it is easily accessible. I pre-structure my days by making and religiously adhering to a schedule. I identify “hard” tasks and make plans for them. Before starting a task, I alert myself to stop and think, power up, and follow my plan. Then I proceed slowly and carefully and monitor my feelings and my performance to assure a quality and efficient result. If anything goes wrong, I write down my “brain-injured moment,” analyze it, and make a plan to prevent it from ever happening again.
I am now functioning better than I have my whole adult life. I have gone from merely existing and barely surviving to recovering and thriving. Larry says that I am becoming the “alpha female” I was meant to be (but a nice one).
I have cut an average of at least 2 hours from my working day. I used to work after 7:00 p.m. or on a weekend an average of three times per week. It is now once per week. I have far fewer cases on the “late list.” I can schedule and take leave whenever I want it. More importantly, my relationships are improving and I can absorb life’s inevitable challenges with almost impeccable composure, most recently that of my husband’s colon cancer.
My service chief is so impressed that he volunteered to write my TBI advocacy goals into my performance pay contract for next year. Even though they have nothing to do with pathology, he sees them in line with the VA mission.
It took me 29 years to find the help that I needed, primarily because the medical community knows little to nothing about how to recognize the cognitive impairments caused by brain injuries or what can be done about them. With one exception, all the doctors did not even know about HCR. Even the doctor who knew about it did not mention it.
I found out about HCR on my own, researched it, and paid for it on my own. It is not an exaggeration to say that HCR enabled me to take back my life, but I would wager that 99% of physicians don’t know anything about HCR or even that it exists.
Although now considered a practice standard, HCR is not widely available outside of Europe, Israel, New York, and New Jersey. A Department of Defense report states that HCR is the ideal form of cognitive rehabilitation. Yet military and civilian insurance refuses to pay for this or any form of cognitive rehabilitation based on “evidence-based” medical reviews that threw out 90% of the evidence because the studies were not randomized controlled trials.
Time to Change
The time has come to up the “standard of practice” for post-acute brain injury care. At present, most survivors receive no rehab at all. The current emphasis is on dealing with the physical injuries and getting the patient home. Within a year, most look and sound “fine” and are “neurologically intact” on physical examination. Meanwhile, they (and their physicians) have little to no insight into their deceptively subtle but permanent cognitive impairments that wreak havoc on their ability to function successfully at home and at work.
Most survivors attempt to work. Often they look and feel fine, but they are no longer successful at the jobs they previously did. Usually they have not lost the necessary skills, but most quit or get fired within a couple years. Their families and their employers are left scratching their heads trying to figure out what happened. Usually it is chalked up to psychological or personality issues.
Before injury, our executive systems monitored and automatically adjusted to difficulties or hurdles. That no longer happens automatically any more. We can do each of the individual tasks, but our cognitive impairments prevent us from doing our work efficiently. When something goes wrong, it is easy for us to be overwhelmed by and have a “catastrophic response” to a situation that could have been avoided by planning ahead. Because we have little or no insight, we are not able to learn from their mistakes. Meanwhile we lose our jobs and most of us end up divorced and living alone.
Doctors need to learn to recognize and recommend treatment for people with brain injuries. The problem is that most of us still feel “normal.” Executive dysfunction means that our brains lack the ability to see themselves. We are not going to walk into the primary care office saying, “I am suffering the effects of a chronic brain injury.”
If it took me, with all my resources, 13 years to diagnose myself and 16 more years to find the treatment I needed, what about all the others who are “walking wounded”?
Unfortunately, even if I had my injury now, I still would not receive the help I needed to succeed in life. Beyond acute care and immediate physical rehab, doctors (even rehab doctors) know next to nothing about cognitive rehabilitation. I would be treated and released from the hospital pretty much the same way I was in 1984. I have interacted with dozens of survivors over the last few months whose stories are similar.
I know a woman who had surgery for a brain tumor 3 years ago. She was released to live at home alone with no instruction or follow-up beyond the standard postop visits. She slept “all the time” for months and was completely incapable of grocery shopping, paying her bills, etc. She came close to losing everything.
Why did this happen? Well, she looked and sounded “fine” to the doctors and surgeons caring for her. They could not “see” her subtle but very real cognitive impairments because they did not recognize them. At the very least, she should have had a case manager until she got back on her feet. She is an intelligent woman who now lives on disability, but I am sure she could return to productive work if she got cognitive rehabilitation. Her story is not an exception but typical. This is a disgrace and needs to be brought to the attention of the medical community at large.
Neuropsychologists have been trying to tell us that cognitive rehabilitation is needed to optimize brain injury recovery, but their voices have had little impact in the medical community, on insurance companies, or military policy. According to the American Congress of Rehabilitation Medicine, even the cognitive rehabilitation that is generally available is about 17 years behind the literature.
That is what I hope to change by telling my story. I want to help educate the medical community about diagnosing chronic TBI and about the potency of cognitive rehabilitation. I ask that you join me in advocating for widespread implementation of holistic cognitive rehabilitation so that other survivors can optimize their own recoveries as I have mine. An extraordinary recovery like mine need not be the exception.