Donate
DONATE

Post-TBI Syndrome (PTBIS)

12-5-09

Dear Medical Community,

Please Consider a “Post TBI Syndrome.”

The Brain Injury Network (BIN), a brain injury survivor advocacy organization, recommends the emphasis of a traumatic brain injury (TBI) classification entitled Post TBI Syndrome. This term would be used in an all-inclusive fashion and under its umbrella all medical, psychological and other diagnoses from post-tbi would be included. We know this has to come from the medical community, but, in the parlance of football, would you please consider catching the ball we are throwing your way, and would you please run that ball in for a touchdown?
Post-Traumatic Brain Injury Syndrome, also known as PTBIS, is a set of symptoms that a person may experience for weeks, months, years or life after a traumatic brain injury (TBI). Some symptoms may manifest a substantial period of time (months or years) after TBI. PTBIS may occur subsequent to mild, moderate, and severe cases of traumatic brain injury. The condition can cause a variety of symptoms: cognitive, such as difficulty attending, concentrating, executing, focusing, judging, processing, remembering, speaking, tracking, or understanding; behavioral, such as emotional lability, irritability, mood swings, or outbursts; or physical, such as endocrine dysfunction, fatigue, headache, incontinency, nausea, seizures, sleep disorders, or tinnitus. There are many other possible symptoms. Disorders associated with PTBIS might also include but not be limited to perceptual-motor disorders, somatosensory disorders or vestibular disorders. PTBIS might also periodically cause secondary psychiatric disorders, such as depression or isolating behaviors, to exhibit. Diseases associated with PTBIS might include early-onset Alzheimer’s disease or early-onset Parkinson’s disease. There is no treatment for PTBIS itself; however, symptoms can be treated. It is partially known what causes PTBIS. Physiological brain damage from traumatic brain injury causes PTBIS.

Why Patients Need a Post TBI Syndrome Classification.

Patients dealing with the post-tbi period need one medical concept, one umbrella term, to help them deal with an assortment of potential complications from tbi in a life post-tbi. Sometimes patients’ symptoms are missed, partly because they themselves may have a difficult time articulating to the doctors what their symptoms are. Indeed, they may be so confused, tongue-tied and/or dumbstruck from the TBI that they themselves can’t pin down some of their symptomology, but they do know that something is wrong; many things are wrong. So, alas, between uncommunicative or insufficiently expressive patients and medical assessment modalities such as brain scans that are not sufficiently sophisticated to spot the underlying brain damage issue, the patients are sometimes not getting the validation and treatment that they need.Additionally, patients need such an affirming designation such as Post TBI Syndrome because time and time again TBI survivors reporting symptoms clearly attributable back to traumatic brain injuries have been debunked. Sometimes patients have been told that their symptoms are not real, do not have an underlying physiological origin, or are psychosomatic or are from traumatically induced stress. Other times patients have been told that their symptoms don’t amount to much or are nothing major to be fretting about. Not being believed, or understood, or treated, or validated can be crushing and defeating for a patient living in the muddle that is post tbi. The burden is so great.
But luckily there are forever advances in medicine. Many medical research findings now are showing that there can be long-term and sometimes even permanent physiological problems in the brain that were heretofore not provable or proven. The medical community knows the kind of medical research. Empirical studies. For example, just fill in the blanks. “Doctors at this or that hospital studied x numbers of patients with TBI and the study results indicate that this or that percentage of said patients have this or that disorder x numbers of years post tbi.” Or, “state-of-the-art neurological imaging (fMRI, MRI, etc. scanning, brain mapping, etc.) pinpoints minute damage in TBI patients’ brains.” Please refer to medical journals to read said articles. Additionally there is now ample medical research evidence that shows that what in the past might have been thought to be less serious TBI’s might sometimes have more to them than was previously thought. Unfortunately, these tbi-engendered problems can sometimes affect the body, health, and/or mind of a person who has sustained a TBI, a tbi survivor, for life.
Now that medical science has caught up with the anecdotal reports that have come from the tbi injury survivor community for years, it is time for an all inclusive classification to be endorsed and promoted by the medical community. The designation Post TBI Syndrome would be very useful because it is pretty clear, is it not? However, call it whatever the medical community, upon consensus, believes is the most appropriate title based on medical and scientific proof. “Post TBI Syndrome” would be very descriptive from the survivor point of view. We in the survivor community who suffer from ”Post TBI Syndrome” know what that means. Most of us can put two and two together, and have among ourselves, discussed many of the symptoms of Post TBI Syndrome for years.
Further Discussion.
The TBI Phase.
First let us discuss the initial TBI phase. Even in the acute and subacute stages, (early on in the hospital) there are a vast number of potential diagnoses. Patients are being offered a confusing array of diagnoses for what often amounts to about the same thing. Some patients are told that their tbi symptoms have come from minimal or mild brain injury, minor head injury, minimal brain damage or concussion. Patients with more serious tbi might be diagnosed with tbi, moderate tbi, severe tbi, or families have been told that their loved one has catastrophic tbi. Sometimes the state of consciousness is the key aspect, and families are told that the patient is in a coma, is minimally conscious (is in a minimally aware state), is experiencing post-comatose unawareness, prolonged coma, is suffering from apallic syndrome, or is in a (perhaps a continuous, persistent or permanent) vegetative state (PVS) or (the more politically correct and sensitive practitioner might say) persistent unaware state. Some families unfortunately have to hear that their loved one is “brain dead” or very close thereto, although the precise nature of what constitutes death is being updated all of the time due to medical advancements in evaluation techniques.
The Post TBI Phase.
But let us focus here on the patients who ultimately wake up and are no longer in the immediate acute or subacute stages. This, we surmise, must be construed as the post-tbi phase. Most patients do indeed leave the hospital and enter a “post tbi” phase. Over time as new symptoms surface, and they often do, these patients seek out relief. Now physicians will hone in on particular aspects of the post tbi condition. Often the focus and diagnosis appears to coincide with the particular specialty training of the doctor. Patients might receive a diagnosis such as mild traumatic brain injury (mtbi), moderate or severe tbi from a neurologist or a neurosurgeon, postconcussion syndrome (also seen as post concussion syndrome) from a sports medicine doctor, or traumatically induced Meniere’s syndrome or benign positional vertigo from an ear-nose-throat doctor. Other diagnosis’s coming out subsequent to TBI could include frontal lobe syndrome, temporal lobe epilepsy, whiplash syndrome, post traumatic headache, post contusion syndrome and other conditions as well. Sometimes the diagnosis might partly hinge on the duration of the symptoms. For example, someone with a mild traumatic brain injury (mtbi) originally diagnosed with postconcussion syndrome (pcs) might be advised that, since symptoms have persisted over six months, they have "persistent post concussion syndrome" (ppcs).
Some patients do not get several different diagnoses. In those cases one might surmise that the condition was more obvious to the medical diagnosticians in the first place because the injuries were more serious and obvious. These patients might have been told they sustained a severe closed head injury, a diffuse axonal injury, a penetrating head wound or a skull fracture. Still, the documentation of a very serious brain injury is absolutely no guarantee that the tbi survivor is not rebuffed later when he or she is reporting subsequent symptomology such as fatigue; headaches; irritability; problems sleeping (insomnia); or problems in crowds, with noise and sound stimuli (hyperacusis), or with light (photophobia). Even some of these “clearly documented” severe TBI survivors feel that they are not believed when they report these symptoms.
Additionally, there are other specialists who have an entirely different set of training and terms to use in the assessment of the, by this point, increasingly frazzled patient. We have the psychologists who wish to focus on the cognitive and behavioral aspects. In their professional competency range they will offer up tbi-related conditions such cognitive impairment (e.g. short term memory, attention or processing disorders). Neuropsychiatrists might be more likely to diagnose psychiatric disorders such as mood disorder, depression, post traumatic stress disorder, or secondary psychiatric conditions following TBI. Physiatrists will focus on the physical and rehabilitative medicine aspect. Physical therapists will analyze for conditions such as movement disorder (e.g. ataxia) or somatosensory disorder (e.g. position sense disorder, sensory processing disorder, proprioception disorder). Vision specialists might find post trauma vision syndrome or vision midline shift syndrome.
Occupational therapists might concentrate upon functional aspects and focus on compensations and practical life skills. Speech pathologists (therapists) will zero in on communicative disorders (e.g. fluent or non-fluent aphasia, dyslexia, anomia). And of course, the legal team (attorneys, lawyers, insurers) for “the other side” (if there is a lawsuit or benefits claim) will advocate that the post tbi condition is a psychosomatic one, a preexisting one, or they will in some other way attempt to disprove that whatever is transpiring is due to a “tort-related” or workplace-related tbi injury that might allow for compensatory damages or benefits in law.
There are many conditions and there are many types of specialists and consequently there are many names. It can get very interesting when a patient makes the rounds to various specialists and is told he or she has several of the various conditions and disorders mentioned above. It is enough to make the average patient throw up his or her hands and cry uncle, then retreat. If one is a bright patient in spite of the head trauma, the patient might be able to make out that different specialties must call the constellation of different tbi symptoms by different names. And that explains it then. But considering that a person suffering from Post TBI Syndrome is mentally in a swirl anyway, all of these various diagnoses can be quite overwhelming and confusing. It also can be very expensive, taxing, and time consuming going from specialist to specialist.

How the Creation of a “Post TBI Syndrome” Would Help Patients.

Why are we, the survivor community, so eager to advocate for a definitive term? It is because so many of us have been given different post-tbi diagnoses. The various terms utilized by various specialists within the medical community pretty much describe variations or aspects of the same thing, namely what we would call now Post TBI Syndrome, but it has been very confusing for many people who are already feeling confused due to the TBI. Yes, depending on the specialist we have gotten different pronouncements. Some patients with lesser albeit still compromising injuries have been told by physicians that they have “postconcussion syndrome.” Regarding the heavily used term postconcussion syndrome, we think that postconcussion syndrome is not a broad enough term. For one thing, many tbi survivors did not sustain merely a concussion. They had a much more serious brain injury. It also begs the question, if someone has so many severe outcomes after a concussion, how can it be argued that he or she merely had a mild brain injury (concussion)? We at BIN wish to argue that anything causing many months and/or years of dysfunction could not have been merely a concussion (minor or mild brain injury) in the first place. It must have been a more severe brain injury to start with. So, if someone is ill with post-tbi symptoms for a month or two, why yes, perhaps postconcussion syndrome is acceptable as a diagnosis in that instance, but if the post-tbi dysfunctions persist and are extensive, then perhaps the term Post TBI Syndrome, which would apply to a broader swath of people with TBI, and has no arbitrary durational time frame, would be more appropriate.
One way to help clarify this entire situation is to use one preeminent term, and use it with conviction. There needs to be one good all-inclusive term for what might happens to a human being post traumatic brain injury. All of the conditions, and dysfunctions, and aberrations, and abnormalities mentioned above are caused by the TBI. Therefore, if they occur due to a TBI, they should in those cases all fall into the category “Post TBI Syndrome.” Having one master term, such as Post TBI Syndrome, shall certainly lead to better understanding and focus for the patient community.
So please, medical community, come to a consensus and offer up the term Post TBI Syndrome. The tbi survivor patient community needs one good name for this entire smorgasbord of potential outcomes from TBI. We need it for diagnostic purposes, for validation of our symptoms (as an affirmation that these are real problems, not just some maligner’s complaint), and for treatment purposes. We need such a phrase in order that we may better hone in upon management strategies and compensatory strategies for our tbi-engendered deficit areas. We who were permanently and with the current state of medicine are irretrievably damaged need such a classification for legal reasons such as pursuit of workers’ compensation or long-term disability benefits. We need such a classification to better pursue our tort lawsuits against people or entities that have harmed us. We need a concrete definition for damage awards for all of the damage done. We need such a classification so that we can seek out and receive appropriate accommodations regarding these issues when we are at work or school. A classification and diagnosis of “Post TBI Syndrome” will help patients get the education that they need regarding their own maladies from TBI. It will help patients make informed medical choices for themselves.
We need society to know that there are not just the well-documented, generalized symptoms from TBI such as fractures, seizures, memory problems, and headaches, but many more potential subtle, sometimes hidden, dysfunctions in the brain that can occur from TBI and sometimes even years post-tbi. Putting a name on this whole constellation of symptoms that can arise from traumatic brain injury, whether it is concussion, mild, moderate, or severe tbi, is going to be very helpful to the patients. This is a patients' rights issue. Such a classification would also demonstrate that the medical community is willing to give patients a tool, a tool to understand their own situations in a concrete, definitive way, not just various (for us) confusing diagnoses.

How the Creation of a Post TBI Syndrome Would Help the Medical Community

And the medical community also needs such a catchall phrase so that it can bill properly when doctors and others in the community treat us survivors. Doctors need to have an ailment that is recognized by the insurance companies and also by the government. There must be something viable and concrete for doctors to say so they can get paid when they minister to our medical needs. It might even help the medical research community to better focus on the entire Post TBI Syndrome situation when said community is conducting its research with regard to us.
A “Post TBI Syndrome” classification will also help “general doctors” who are not specialists in neurology better understand their patients with traumatic brain injury. Don’t you think that this classification is supported by current medical research and findings? So, dear medical community, please do your part. Only you can develop, endorse, and promote this classification. You are the ones with the training, the credentials, the insights, the leadership skills, and the power to get this classification accomplished. Please do this to help provide a better future, for your patients who have traumatic brain injuries and Post TBI Syndrome. It will only help patients if a definitive term such as Post TBI Syndrome used.
Thank you.
Sue Hultberg, M.A., J.D.
• President, Brain Injury Network, an international and USA national brain injury survivor advocacy organization (1998-2014) • Author of Brain Injury Advocates: The Emergence of the "People with Acquired Brain Injury" Human and Civil Rights Movement (2012)
• Author of Traumatic Brain Injury Rehabilitation and Compensation: Survivors' Perspectives (1996)
Note: This is not a medical paper regarding traumatic brain injuries. This article has not been peer reviewed. I am not a peer. I am just a tbi survivor (1985) who leads a brain injury survivor advocacy agency. And I am someone who knows all about Post TBI Syndrome on a personal level.
See also: Brain Injury Network Public Policy Regarding the proposed PTBIS Diagnosis for All Stakeholders
Postscript.
6-22-2010
We do believe certain medical authorities are reading this article and believe that we at BIN are on to something. However, said professionals might be thinking to use some other term, such as "post coma syndrome" or "post head injury syndrome." Post coma syndrome would be a subset of Post TBI Syndrome, but it would not include all people who have Post TBI Syndrome. The definitive factor for this classification that we suggest, PTBIS, is not whether or not someone was in a coma. Everyone knows about people with serious head injuries who never even lost consciousness. (For example, there is the famous penetrating head wound situation where the person has a gigantic spear lodged through his skull and he is wide awake.) But yes, a post coma syndrome would be a good term for certain people in our community, namely, those who went through a coma phase and subsequently have "the syndrome." Again, that is not everybody. Not everyone went through a concussion (and subsequently has post concussion syndrome) or a coma (and subsequently has post coma syndrome). There are other scenarios. That is why we prefer a catch-all phrase such as Post TBI Syndrome. However, if doctors decide that there should be a post coma syndrome that is the correct course. Yes, this could be yet another phrase for people in our community to digest. However, we think that post coma syndrome would be another subset term, just as post concussion syndrome ought to be. Both ought to be subsets of the classification Post Traumatic Brain Injury Syndrome, in our humble opinion. And, there could be other subsets. The medical establishment will have to decide.
Now, this second idea a medical professional might have, which is to think of what we suggest as post head injury syndrome, well, that is more or less repeating what we said, although the word "head" is broader than the word "brain." Just 20 years ago the doctors called our situation "head injury" and it is still commonly used. However, it seems that the medical community itself switched off that parlance and went to "brain injury." This is why we didn't suggest post head injury syndrome. We suggested Post TBI Syndrome.
April 8, 2011
We also see that recently (spring 2011) a few people have been researching the terms post traumatic brain syndrome or post traumatic organic brain syndrome. These terms seem to have had some use in sophisticated medical, including international medical research, studies over the years since the 1970's. Perhaps someone is trying in 2011 to reintroduce these terms to the medical professionals, at least the medical researchers. If that is so it would be beneficial to us all if the terms post traumatic brain syndrome and post traumatic organic brain syndrome were actually defined by noted medical authorities somewhere and in any definitions the two terms were distinguished from each other, and the reason for the usage of said terms was made clear. For example, perhaps those two particular terms are related to brain anatomy issues. But we still think this term Post-TBI Syndrome is the best choice of all. And there is no need to continually muddle the situation with the addition of or reintroduction of yet another term, or two, or three unless each term has some special function as yet unknown to the patient community. That is the point, though; we would like to know what all of the terms in use are, and what their definitions all are. And, as we like to say a lot, we would like there to be consistent definitions for any and all medical terms used to describe us.
It looks like perhaps someone is thinking to call what we have described first "TBI Syndrome." Well, we chose Post TBI Syndrome because there is a precedent. There is polio and there is post polio syndrome. We think this is a good medical precedent. We venture to guess that there is a difference between TBI (the acute and/or crisis stages) and post TBI (the chronic stage) just as there is a difference between polio and post polio. Therefore, we think that Post TBI Syndrome is a more descriptive term than TBI Syndrome.
And finally, in conclusion we once again state that due to our vast array of issues the introduction and/or utilization of the umbrella term, Post-TBI Syndrome, would be very useful to us, and probably the medical community as well. Thank you.

Distribution List

The articles were sent March 8, 2010
As a part of our advocacy mission on behalf of brain injury survivors around the world, the Brain Injury Network has sent the Dear Medical Community, Please Consider a “Post TBI Syndrome” Brain Injury Classification article to the following organizations.
American Academy of Neurology (AAN) in St. Paul, Minnesota. This is an international professional organization of over 22,000 neurologists. Web Site: https://www.aan.com
American Association of Neurological Surgeons (AANS) and the American Association of Neurosurgeons in Rolling Meadows, Illinois. This is a scientific and educational association with over 7,600 board-certified neurosurgeons worldwide. Web Site: https://www.abns.org
European Federation of Neurological Societies (EFNS) in Vienna, Austria. European national neurological societies are affiliated with EFNS. EFNS represents over 19,000 neurologists. Web Site: https://www.efns.org
Federation of European Neuroscience Societies (FENS) in Berlin, Germany. This organization represents many European neuroscience societies. It advances research and education in neuroscience. Web Site: https://fens.org
International Brain Injury Association (IBIA) in Alexandria, Virginia via a management company. Web Site: https://www.internationalbrain.org
International Brain Research Organization (IBRO) in Paris, France. This global neuroscience federation is dedicated to the promotion of neuroscience and communication between brain researchers around the world.. Web Site: https://ibro.org
National Institute of Neurological Disorders and Stroke (NINDS) in Bethesda, Maryland, USA. This organization is part of the US Department of Health and Human Services and is a component the department's National Institutes of Health. The mission of the NINDS is to reduce the burden of neurological disease. Web Site: https://www.ninds.nih.gov
The Brain Trauma Foundation (BTF) in New York, New York. This organization is dedicated to improving TBI (traumatic brain injury) patient outcomes. Web Site: https://www.braintrauma.org
World Federation of Neurology (WFN) in Surrey, United Kingdom. This is an international body representing neurology in over 100 countries. This organization is affiliated with the World Health Organization. (WHO). Web Site: https://www.wfneurology.org