Since struggling with my concussed brain, navigating the medical systems often misinformed inadequately weak, insufficient recommendations, and researching on my own, I am celebrating the discovery and use of the qEEG and Neurofeedback, as two of the three heroes in my recovery journey. [qEEG is quantitative electroencephalogram that analyzes electrical activity of the brain.]
I applaud myself for being the third. Mindset is key in everything. I intend to recover fully. This struggle should not be everyone’s story. That is why I would like to make a few suggestions, which particularly involve the inherent responsibility of doctors and lawyers to impart specific information when working with someone who is challenged with the effects of a TBI. This is going to require some new education on their part.
As I am not a doctor or lawyer, there will be those who may stand up against what I have to say. I will warn those individuals that unless they have experienced and endured what I have, and read what I have, they may want to check their egos and learn. They may also like to check with a doctor I have found who had to step out of her practice for a few years while she navigated her brain injury recovery.
She recently shared with me that my assertion that doctors do not know how to help their patients recover from a brain injury is true. She went to over two dozen doctors and sadly experienced what the rest of us have been glumly wrestling with. The fact that there are few doctors, if any who appreciate what we tell them about symptoms. There are times when those of us who appear to be less educated have some pretty good ideas inspired and validated by experience. This happens to be one of those times.
None of them had the time.
I then realized that this was supposed to happen and forced me to ask myself some important questions; what was there not to discuss? What would the benefits be if qEEG was allowed as a part of the legal and medical process? Who really stood to lose if this technology was embraced?
During Dr. Paul Henry Wand’s professional life, he had the opportunity to work with many people who experienced concussions of all types. I had the good fortune of discovering his book five years into my brain injury recovery solo flight. That was a very happy moment.
Dr. Wand became my neurologist of record and placed me on a confident path to recovery. The fact that neither the hospital or my primary care doctor had recommended a neurologist or any solutions other than rest and water, still is to me, a bewildering realization. I admire and respect doctors. Yet, there are many doctors like this. Most important to note is that there are millions of people suffering needlessly because of this.
Addressing traumatic Brain Injuries is still an unfolding story. “Not many physicians, including doctorate-level therapists, know the value of qEEG for diagnosing TBI,” states Dr. Paul Wand. This statement speaks volumes to me. I am grateful that I did not settle for the advice of the professionals when it did not feel right.
I had a qEEG evaluation after my initial course of Neurofeedback sessions and listened to what the reviewer shared regarding the health of my brain but chose not to look at the colorfully coded test results indicating an improved yet still struggling brain. My test results indicated a brain that was not in optimal health. I was intent on accomplishing a great deal and choose not to focus on those results.
You see, I believe that I am a prime example of “mind over matter” and what matters is that within a year, my mind matter had improved. The colored charts showed this. Most importantly, I am different and improved in many ways. I experience this daily and choose to stay on this course. It’s working for me despite the Courts and most doctors not acknowledging its power.
Or do they?
So, if it works and it certainly does, according to my personal experience and my test results, the question at hand is why is it not utilized more often? According to Dr. Wand, one who has dedicated a lifetime to “curing concussions”: “the answer is not based on scientific reasons.” And …
It is a combination of: “politics, the failure to teach the test procedure in medical schools, and position statements by entities such as the American Academy of Neurology all of which have negated the possibility for a positive outcome Neurofeedback based on qEEG normative databases, can have on those who have endured a TBI.”
This begs the question, “What can or should be done about this?”
The invisible is made visible with the use of this test. It prints out in very clearly defined colored patterns. A child can see the differences. The evidence is irrefutable. However, at this time, the qEEG is not allowed as evidence under the Daubert Standard. It is time for this to be reconsidered. There are plenty of peer-reviewed studies as well as its current mushrooming in use for treating those who have had a TBI including the AMEN clinic, Johns Hopkins, and the Cleveland Clinic. The time has come to embrace the possibilities that this offers.
“The first qEEG study was by Hans Berger (1932;1934)” qEEG testing with the compilation of a normative database has been in use since the 1950s when it was developed by UCLA using the data acquired from the astronauts in NASA. There has been well over half a century of documentation indicating not only the reliability of results but also the effectiveness of treatments when used in concert with Neurofeedback.
This should be enough evidence to allow the considerations of the Court to change this antiquated policy. Perhaps if more attorneys utilized this test in their defense of their clients there would be no question as to whether a brain has been negatively impacted by a seemingly innocuous jolt of a head, such as that which occurs in a whiplash.
Often the litigators find themselves and more importantly the individual they represent, at the mercy of an “expert” witness. The expert usually is someone deemed qualified to evaluate the state of the litigant’s health, particularly whether a brain injury and all that it negatively creates in someone’s life, is an actuality. This clearly subjective and speculative evaluation is often accomplished by the expert evaluating medical records. All too often it is not a direct or even current examination of records or the individual.
Here is when things can get quite dicey. Even if it were an exam in person a person who has been affected by a TBI and is having significant difficulties navigating normal day-to-day tasks as they once did before the event that caused the injury, may appear to others, even those whom they live with, to be “normal.” An individual knocked out of society by this invisible injury adjusts behaviors to make it through the day. They choose to not bring any more turmoil into their day. People don’t understand. Some even argue. It’s not easy.
Life certainly is not how it was before our injury. It is a challenge. Writing this article has been a perfect example of that for me. This in my pre-concussed days, would have taken a few days if not hours…now, it’s a very different experience. You don’t see that. Reports can be misleading. They often are the culmination of false negative readings of CT scans, fMRI’s, and notably the doctor’s subjectivity based on other doctor’s patient office examinations. It becomes the battling of opinions. The one opinion they fail to consider is that of the person affected by the injury.
I can tell you with the utmost certainty that a patient in the company of a doctor or therapist when experiencing concussive symptoms, will often not remember to relay the specifics of their difficulties. It’s very hard to represent one’s inadequacies when the brain is compromised. In addition, we do not like being seen as “different.” We want our brains to be as they were before. If we stay silent, we are safe in our denial. We can appear “normal.” Valuable information is often withheld as it is very frustrating to process information in a short amount of time.
Hence, the injured brain does not serve us well. Stress exacerbates the possibility for clear and concise communication. A lot gets lost in the flooding of emotions and sensations. There is a lack of clear transference of necessary information. The concussed brain is in control and all who are looking from the outside have little idea just how difficult that is for the afflicted individual.
Constantly being misunderstood elicits a myriad array of negative emotions and often unattractive and inappropriate reactions. This may lead to an unwillingness to communicate and an unwillingness to be in social situations. People who have had a TBI are not their own best advocates.
If I had another wand… a magic wand, I would wish that there be mandatory qEEG reports including a fMRI or CT scan, for all who have experienced this invisible injury along with a lot of other checks. The brain controls every aspect of our lives, inside and out. It’s complicated and I am willing to wager that there have been millions of people misunderstood, whose personalities and learning styles have been altered, and who have suffered needlessly for decades.
It is time that there be advocates assigned to those who live alone or those who are caring for those who are dependent upon them, especially when it comes to making medical and legal decisions. The sale of property, making large purchases, attending court, or anything that can potentially impact the concussed if they are left to fend for themselves can have long-term detrimental effects. Bad decisions are easily made by those whose brains are not operating optimally. I know. I did that.
To expect a brain-injured individual to at best adequately, as opposed to superbly, make sound decisions for themselves is insane. I was expected to navigate my recovery. I thank God every day I was brought up by my parents whose genetics, work, and play ethic helped me.
In addition, I would like advocates to be individuals who truly understand what it is like to have a brain injury until there has been an accumulated body of accepted recognition of symptoms that currently elicit disbelief from medical professionals. Ideally, they should be someone who has experienced a TBI and recovered. There are “experts” who are trying to help but have no idea about what the difficulties are and as a result offering information that is not helpful. My newly found Brown University Medical doctor who had to take time out from her practice due to a brain injury agrees.
One very simple example of doctors having no idea about the subtle and debilitating incidence of flooding, a very common occurrence would be the time I attended an event sponsored by a major brain injury advocate group. It was held at night in a large auditorium. The program began twenty-five minutes late. The Brain Injured need their sleep. While the audience was waiting for the presentation to begin, we had to endure a brightly lit, large echoing room that gave me an instant headache. I know I was not the only one experiencing this. I finally got out of my seat and approached one of the organizers, who was the doctor in charge of the event, standing by the exit and asked if the lights could be dimmed while we waited. You see, people who do not know … just don’t know and the unfortunate thing is… it’s even those who are supposed to know.
It’s time to make changes, recognize the importance of seemingly new therapies, and allow them to be used with effective enthusiasm. We should train and assign advocates. There must be new protocols in place within the medical community for diagnosing and treating. This “invisible injury” community is still waiting to be fully seen and the community consists of people of all ages and backgrounds.
Gail Waitkun
Author, Artist, Educator, Speaker, Concussion Recovery
https://calbizjournal.com/author/gail/
207-200-0567
Of all types of injury, those to the brain are among the most likely to result in death or permanent disability. (1)
Brain injury is the leading cause of death and disability worldwide.
Traumatic brain injury is the leading cause of seizure disorders.
https://www.internationalbrain.org/resources/brain-injury-facts
WEBSITES
http://citeseerx.ist.psu.edu/viewdoc/download?doi=10.1.1.186.1882&rep=rep1&type=pdf
https://qeegsupport.com/category/in-the-media/
https://www.appliedneuroscience.com/PDFs/History_of_QEEG_Databases.pdf
https://www.law.cornell.edu/wex/daubert_standard
BOOKS
Evidence-Based Practice in Biofeedback & Neurofeedback Gabriel Tan, Frederick Shaffer, Randall Lyle and Irene Teo. 2016
The Concussion Cure (P.157) Dr. Paul Henry Wand MD
NOTES
It is now the Daubert standard, the factors that may be considered in determining whether the methodology is valid are: (1) whether the theory or technique in question can be and has been tested; (2) whether it has been subjected to peer review and publication; (3) its known or potential error rate; (4) the existence and maintenance of standards controlling its operation; and (5) whether it has attracted widespread acceptance within a relevant scientific community.
The Daubert standard is the test currently used in the federal courts and some state courts. In the federal court system, it replaced the Frye standard, which is still used in some states. https://www.law.cornell.edu/wex/daubert_standard
The first QEEG study was by Hans Berger (1932; 1934) when he used the Fourier transform to spectrally analyze the EEG because Dr. Berger recognized the importance of quantification and objectivity in the evaluation of the electroencephalogram (EEG). The relevance of quantitative EEG (QEEG) to the diagnosis and prognosis of brain dysfunction stems directly from the quantitative EEG’s ability to reliably and objectively evaluate the distribution of brain electrical energies and to compare different EEG measures to a normative database.
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