Advocacy by and for People with ABI (Acquired Brain Injury)
Public Policy of Brain Injury Network Policy dated 9-12-09
Post Traumatic Brain Injury Syndrome, or Post-TBI Syndrome (PTBIS) Diagnosis: We would like the medical community to adopt this syndrome as a viable diagnosis and we encourage research and treatments for this condition.
Proposed Brain Injury Classification: Post Traumatic Brain Injury Syndrome or Post-TBI Syndrome (PTBIS)
Introduction. We would like nothing better than if the most esteemed medical provider professional associations in this world would come out to use the term, “Post TBI Syndrome”. And please then do define PTBIS in the most medically proper and proven manner. We believe that the terms “Post TBI” and “Syndrome” should come together in a medical classification that defines our situation. “Post” means after. “TBI” means traumatic brain injury. “Syndrome” means a combination of signs and symptoms that are indicative of a particular disease or disorder. Since the post TBI period may involve disease processes, disorder processes, and behavioral processes attributable back to TBI, we believe that using the term “syndrome” is more reflective of our situation than merely using the term “disease process”.
This definition is being put forth by the Brain Injury Network (a survivor advocacy organization) for analysis, debate, review and affirmation by the medical community. As brain injury survivor advocates, we favor the use of accurate terminology in medicine. We favor the use of the terminology that most reflects the latest medical research. So, would the medical community be so good as to consider, endorse and emphasize this phrase, Post TBI Syndrome?
When the medical community decides, if it does, to support this terminology, you might care to refine and expand on a definition such as this one:
Proposed Definition.
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.
Post TBI Syndrome verses Post Concussion Syndrome.
This term, PTBIS, would be broader than postconcussion syndrome, which, if you were to think about it, should only refer to postconcussion cases. It seems to us that someone who had a very serious tbi, was in a coma, had brain surgery, or significant skull fracture, etc., didn’t have merely a concussion. But many people with tbi of this level are eventually diagnosed with “postconcussion syndrome”. That just doesn’t sound quite technically correct, even to lay people such as ourselves. Perhaps this term is utilized because the medical community has not settled on a more descriptive term? Well, we would like to offer, for your consideration, “Post Traumatic Brain Injury Syndrome.”
Further Discussion.
Please use a term that is more reflective of the entire population of people with traumatic brain injury (whether from concussion, coma, mild, moderate, severe, or even catastrophic brain injury, open, closed, diffuse, or penetrating head wound, etc.) Please use the term “TBI” in the syndrome. This syndrome does not merely include cognitive impairments (memory, judgment, etc.) behavioral disorders (irritability), or physical symptoms (headaches). It also might include balance and coordination disorders; hyperacusis; incontinence; mood disorders; motion disorders; neuroendocrine dysfunction; perceptual motor disorders (relating to gross and fine motor control); seizure disorders; sleep disturbances; somatosensory disorders (relating to auditory, visual and tactile processing); spatial disorientation; tinnitus; vestibular disorders (vertigo, dizziness, etc.);and additional disorders. Additionally, there is some evidence that some persons with PTBIS are more likely to develop early onset Alzheimer’s disease and/or post traumatic Parkinson’s disease. Research findings show that many people who sustained a TBI ultimately experience aspects of “Post-TBI Syndrome”.
Now that the medical research has caught up with what we people with brain injuries have reported as our symptomatology for many years, please more accurately reflect the extensive constellation of potential TBI related diseases, disorders and conditions with appropriate, descriptive, all-inclusive terminology. Please use “Post-TBI Syndrome”. Persons with Post-TBI Syndrome may or may not report particular symptoms that are on the ever growing, scientifically-substantiated list. But here now will be a term, a classification, which encompasses the cognitive, physical and assorted other potential short and long-term dysfunctions that may arise out of TBI. The position of the Brain Injury Network is that the existence of Post-TBI Syndrome is already proven. One doesn’t have to be a doctor to see that this, whatever it is called, is already proven. The correlations are already there, as reflected by extensive “state of the art” medical research.
The Plethora of Terms in Use.
Additionally, currently when it comes to Post-TBI there are so many medical terms in use. For people who regained consciousness, one sees postconcussion syndrome; post minor traumatic brain injury syndrome; mild traumatic brain injury (mtbi); postconcussive syndrome (pcs), (or persistent post concussive or persistent post concussion syndrome when symptoms last over six months); postcontusion syndrome or encephalopathy; posttraumatic brain syndrome; and nonpsychotic status post commotio celebri syndrome. Perhaps in part because of our efforts here at BIN some medical authorities are thinking perhaps a post coma syndrome might be a nice addition to the terms in use. Phrases are spelled out as one word or as two words with a hyphen; there is not even agreement on the spelling of these terms. It would help if there were consistent spelling and capitalization. (Yes, simple consistency in punctuation and spelling would be helpful to the patient population.)
There are also more specific designations related to the post-tbi period that emphasize particular aspects of post-tbi. Some of these include post-traumatic epilepsy or seizure disorder; post-traumatic headache syndrome; post-traumatic hypopituitarism; post-traumatic meniere’s syndrome; post-traumatic parkinson’s syndrome; post traumatic pituitary dysfunction; post-trauma vision syndrome and the list goes on and on. Doctors and medical researchers need the specifics to this level of sophistication. However, we patients need one term, one fairly easy term, for us to process what is happening to us post tbi. Well, at one time “brain injury” or “traumatic brain injury” was enough, but no longer what with this proliferation of “post-“ terms. As a way to help individuals with this issue focus, understand and cope, the Brain Injury Network would like to see the introduction and utilization of “Post TBI Syndrome”.
Why Patients Need One Umbrella Term such as PTBIS. Here are some additional reasons why patients need the term “Post TBI Syndrome”. The decision as to whether or not we patients have physiological or psychological issues is often uncertain, unclear, misdiagnosed, misinterpreted, etc. Many individuals with traumatic brain injury who are very distressed from trying to cope with their brain injury related issues are additionally distressed that they have not been believed by their medical providers, family, etc. Some patients can’t even themselves quite grasp what is happening or what has happened. They need clarification. They don’t need ten different diagnoses for what amounts to about the same thing. Oh, they might have been told cerebral contusion; cerebral concussion; concussion; coma; mild traumatic brain injury (mtbi); skull fracture; diffuse brain injury; axonal shearing brain injury; postconcussion syndrome; traumatically induced Meniere’s syndrome; explosive head syndrome; photophobia; post traumatic stress disorder (ptsd) or head trauma or even psychological causation somewhere along the way. Or they might have been told several of these things by various specialists they consulted. Wouldn’t it be nice if they received a consistent answer such as “Post TBI Syndrome”? The Support of the Medical Community is Needed. Treat for the specific disorders within the syndrome, too, but start by recognizing the syndrome. Yes, it seems to us that patients need strong medical advocates who can zero in on and communicate one concept. And let us face it, “Post TBI Syndrome” should and could come into usage as a term without the “It is a controversial diagnosis” baggage that PostConcussion Syndrome managed to pick up in earlier decades in times when the medical scanning technology did not exist to prove the merit of the condition. It appears that technology has caught up. Many studies have now concluded that tbi can lead to long-term, even lifelong complications.
Conclusion.
In conclusion, it is now time for the medical community as a whole to step up and clearly define this syndrome that we patients say and many of the medical scientific papers hint at. This Post Traumatic Brain Injury Syndrome can affect people who have sustained a traumatic brain injury for many years, if not life. It is time. Dear medical community, there’s the proof now. Please let the terminology and diagnoses regarding the Post TBI aspects of life reflect the latest scientific findings. The patients need this. The science warrants it. Thank you.