My dear readers,
This essay may help you and your loved ones learn to cope with any post treatment effects of brain surgery or brain radiation. I copied and adapted my own remix from the brain injury websites I listed below.
A sudden medical crisis, like a stroke or a heart attack, is a brain attack. Any serious brain injury, gun shot wound to the head or brain tumor diagnosis can be like a stroke and requires an amazing ability to embrace extreme contradictions both in the minds of those undergoing treatment and those trying to understand it from afar. In each case and with every different diagnosis, there is human suffering, there are psychic and emotional scars that will be felt and remain long after any medical intervention is over. Sometimes they, the patients will die and sometimes they will have permanent, mild or severe brain injuries, or a variety of functional mental ability losses that gradually progress over time. Once the immediate medical crisis is over, some satisfactions, some newborn social bonds, and some liberation from tired old routines are also often quite profound and meaningful. Change is the only constant and recovery is a process with many ups and downs.
One major gap I see between accounts of brain recovery and actual experiences are the focus on the percentage of people who live or die, like from gun shots or car accidents, not focusing on those who are permanently harmed and otherwise devastated by their remaining chronic condition and their constant need for assistance and on going medical care, often the patient is no longer the epicenter of the social disaster that has been created, as long term financial burdens and emotional effects spread to the other family members and their significant others. Surrounding them, often living in the same neighborhood, is a periphery of friends and co workers who are largely undamaged, but can also be profoundly disrupted by the suffering of brain injury patients and their caregivers no matter what caused the brain injury. It is the huge disruptive force of these powerful emotional and financial issues that matter here to me today.
I am amazed by the remarkable online communication abilities of human communities today to topple old orders and open up new possibilities for the future. This broader effect and its ripples are the same as what a natural disaster does to any society. In the moment of disaster, the old social order no longer exists and people improvise their own rescues, find new shelters, and form new communities. Thereafter, a struggle takes place in the entire social structure over whether the old order with all its shortcomings and financial injustices will be reinstalled or a new one, perhaps hopefully a more just and open one for all, like universal background checks for gun sales or perhaps a universal health care safety net system, will arise.
For example, as a person recovers from their meningioma brain tumor treatment, their brain cells attempt to re-establish the precise balance needed to ensure effective information processing and physical mobility, but this may mean some compensations or adjustments to their neural cell’s original alignments. Neural cells must compensate or adjust to the prior tumor compression, decompression and injury. Some times after large low grade brain tumor removal treatments any task or skill may take longer and memory may not be as complete until all the neural networks realign themselves with time, practice, patience and constant repetition. Mild aphasia or "word finding" problems like my former US Rep Gabby Giffords aphasia might be a social problem too. Neurogenesis is the birth of new adult brain cells and it continues throughout our adult life.
For example, when a person sprains or fractures an ankle, professionals recommend cold/heat treatments, rest and supports (i.e., cast, brace) and specific exercises to help the ankle adjust to the injury and recover maximal function. Depending on the severity of the ankle injury (i.e., sprain, fracture) and what is required after recovery (i.e., long distance running, ballet), the injury to the ankle can disrupt a person’s life.
Obviously, a human brain is much more complicated than an ankle. Yet, similarly, rest, supports (i.e., compensations, modifications) and “exercises” (i.e., cognitive therapies, educational tools and brain retraining) for the brain may be recommended to rehabilitate and restore useful physical function and memory skills. Depending on the severity of the injury and what the person needs to do and wants to do (i.e., care for a family, return to work or school, manage a large company), a mild brain injury can disrupt a person’s lifestyle for a short period of time or even longer.
Diagnosis of Mild Brain Injury
Due to the diffuse and subtle nature of mild brain injury, it is common for typical neuroimaging (CT scan or MRI’s) to show little or no evidence of injury. Believe you me, The damage to the brain is a real injury. One limitation of these brain imaging technologies is they often cannot detect mild brain injury or mild stroke like symptoms. Mild brain injury can often damage the "white matter" of the brain. "White matter" consists of the axons of neurons (connections) in the brain. This injury is much harder to capture or visualize using common types of brain imaging.
There are newer, more sophisticated imaging technologies that show promise in more effectively capturing the damage that occurs in a mild brain injury. However these imaging technologies are currently much more expensive, and are not as readily available. Some of the newer imaging techniques include:
Positron Emission Tomography (PET)
Single Photon Emission Computerized Tomography (SPECT)
Functional Magnetic Resonance Imaging (fMRI)
Diffuse Tensor Imaging (DTI)
Neuropsychological assessment is typically used to assess the functional impact of a mild brain injury or brain tumor. It may also be done while the meningioma patient is on "watch and wait" as part of an active surveillance monitoring plan. This holistic assessment is normally done when some type of brain dysfunction is suspected. A mild brain injury is often initially diagnosed by evaluation of the physical symptoms a person reports after sustaining a brain injury or after treatment.
A neuropsychological assessment is comprised of a wide range of tests that objectively measure specific brain functions. Testing includes a variety of different methods for evaluating areas like attention span, orientation, memory, concentration, language (receptive and expressive), new learning, mathematical reasoning, spatial perception, abstract and organizational thinking, problem solving, social judgment, motor abilities, sensory awareness and emotional characteristics and general psychological adjustment.
The neuropsychological evaluation can be used as a good starting point for a plan of rehabilitation. It can assist brain injury professionals in identifying specific cognitive areas that have been damaged, as well as those areas still intact. You can read more about neuropsychological evaluations and brain injury rehabilitation from the American Psychological Association. Many health insurance plans do not adequately cover additional brain repairing therapies, especially if the person looks "fine".
What can I do if I have a mild brain injury?
Understanding the changes that may have occurred from a brain injury is an important part of the recovery process. This makes public education and awareness crucial for both the person with a brain injury as well as their family and friends. The person with an injury and others need to understand that a “mild” brain injury can result in changes in thinking processes and memory that can affect the person’s ability to return to their former life. While a person can “look fine,” their brain injury is an invisible injury.
Research has shown that education and information about possible consequences and side effects can be helpful to the person with an injury and their family members. Some basic symptoms for family and friends to be aware of include:
Early Symptoms:
•Headache
•Dizziness or vertigo
•Lack of awareness of surroundings
•Nausea with or without memory dysfunction
•Vomiting
Later Symptoms:
•Persistent low grade headache
•Lightheadedness
•Poor attention and concentration
•Excessiveness or obsessiveness and easy fatigue
•Intolerance of bright light or difficulty focusing vision
•Intolerance of loud noises
•Ringing in the ears
•Anxiety and depressed mood
•Irritability and low frustration tolerance
If you suspect you or your loved one may have a mild brain injury or personality changes, please contact a brain injury professional to help with the diagnosis and inital treatment plan, no matter how long ago the injury occurred. Also contact the Brain Injury Association in your state. State Brain Injury Associations and national brain tumor organizations will have information to share and can connect you with support groups, programs and professionals who understand the injury.
Mild Brain Injury Issues
Some important information to share, from families and people who have sustained a mild brain injury:
The recovery from a mild injury is not always quick.
For mild brain injury, the issues are the same as moderate to severe brain injury. While there are general guidelines for recovery, there can be wide individual variations in the timetable for recovery. It can take several weeks, or several months for symptoms to fully resolve and to learn new coping techniques. It takes longer to break old habits and form more constructive new ones.
Recovery is often uneven.
There will be “good days” and “bad days.” This is normal in recovering from a brain injury. An important thing to keep in mind: on the “good days”, people want to get as much done as they can. Often, this can lead to overdoing it, which can bring back symptoms that were previously gone. Even on the good days, it is important to give yourself more time to complete tasks, and to listen to your body. You cannot “tough out” a brain injury.
Create the best possible environment for recovery.
Substances like caffeine, alcohol and nicotine can affect a person with a brain injury much more than they did before the injury. Be aware of the possible negative consequences of alcohol on recovery post injury especially if impulse control is an issue. It is recommended to abstain from alcohol consumption during the recovery period. One place you can read more about alcohol use and recovery from a brain injury is at the Ohio Valley Center for Brain Injury Prevention and Rehabilitation.
Give yourself or your loved ones more time to complete things.
Issues like fatigue, attention and memory issues can cause delays in completing tasks that were more easily and accurately done before the injury. Allowing additional time to do things like laundry, menu planning, shopping, bill paying can help. Thinking out the steps in order needed to complete tasks and writing them down can be helpful too. Better planning ahead can decrease stress and anxiety for both the survivor and the caregiver.
Professional help is important.
It is important to understand the effects of any brain injury. The injury itself can impair the ability of a person to accurately assess their abilities or personality changes. And once problems are identified, often a person with a mild brain injury struggles with figuring out effective strategies to compensate for problem areas. Working with a trained brain injury professional can help identify specific problem areas, and objective adults who can then help them implement effective strategies. You do not need to figure out brain injury and short term or long term memory losses all on your own. There are useful books and many resources available about different types of memory skills that impact who we are and who others think we are.
Support groups can be helpful.
Brain injury, stoke or any illness like a brain tumor can be isolating. People say things like “you look fine,” with the implication that you should be fine. It is an invisible injury. Sometimes just talking with others who have had similar experiences can help a person with a brain injury understand they are not the only one dealing with these issues. Contact the Brain Injury Associations in your state and the four major US brain tumor organizations to find out about support groups or other resources that may be useful to you.
Mild Brain Injury, Stroke and Concussion
It is important to understand that a stroke, or a concussion is a physical injury to the brain that causes a disruption of normal functioning just like any other physical injury disrupts your normal functioning. For example, some ankle injuries (i.e., sprains and fractures) are more disruptive than others, just as some brain injuries are more disruptive than others. The better we understand any injury, the better our chances are for a speedier and healthier recovery.
There maybe some confusion as to the definitions of head injury, stroke and the definition of a mild traumatic brain injury (mTBI). Brain injury can be viewed along a continuum that incorporates concussion, mild brain injury, moderate brain injury and severe brain injury. Each type of brain injury varies depending upon: (1) whether the person was unconscious; (2) how long he/she was unconscious; (3) the length of their amnesia; (4) the resulting cognitive, behavioral and physical problems; and (5) the recovery process.
The definition for a concussion and a mTBI tend to overlap and brain surgery and brain radiation therapy can have mild and/or serious long term stroke-like effects too.
To further clarify, a concussion is defined as a trauma (i.e., a blow to the head or a serious whiplash) that induces an alteration in mental status (physical or cognitive abilities) that may or may not involve a loss of consciousness. Concussion as detailed by guidelines developed by the American Academy of Neurology (AAN) and the Brain Injury Association (BIA), commonly is divided into three different types.
Grade 1 Concussion
•Person is confused but remains conscious
•SIGNS: Temporarily confused, dazed, unable to think clearly, has trouble following directions
•TIME: Symptoms clear within 15 minutes
Grade 2 Concussion
•Person remains conscious, but develops amnesia
•SIGNS: Similar to Grade 1
•TIME: Symptoms last more than 15 minutes
Grade 3 Concussion
•Person loses consciousness
•SIGNS: Noticeable disruption of brain function exhibited in physical, cognitive and behavioral ways.
•TIME: Unconsciousness for seconds or minutes
If concussion, stroke and mTBI are seen as part of the brain injury continuum, with Grade 3 concussion and mTBI overlapping, one can get a better understanding of how these definitions compliment each other and enhance our understanding. The Brain Injury Association estimates that approximately 75% of all brain injuries fall in the “concussion-mTBI continuum.”
For the majority of people who sustain a mild stroke, a concussion or have brain surgery, a full recovery is possible with appropriate diagnosis and management, but side effects may also lead to additional head injuries or falls. The effects of repeated multiple head injuries can be cumulative over a lifetime.
For kids and parents the CDC has information available about concussion management from falls for elderly folks and for safe return to play guidelines for sports. Additionally, the Brain Injury Association supports legislation like "Zach’s Law," enacted in Washington State, that requires any school athlete to obtain medical clearance to safely return to play following a concussion. Information about this legislation is available from your state Brain Injury Association.
Additional Resources
CDC Concussion Booklet
Road to Rehabilitation Series Part 3 - Concussion and Memory
Road to Rehabilitation Series Part 8 - Concussion and Mild Brain Injury
TBI Guide, an online book about brain injury and recovery written by a neuropsychologist.
There are several books available in the Brain Injury Association Marketplace:
Brain Injury Survival Kit
In Search of Wings
Remind Me Why I'm Here
Brainlash: Maximize Your Recovery from Mild Brain Injury
Brain on a String
Shaken but not Stirred
My Sources:
Road to Rehabilitation Series, Part 8 - Concussion and Mild Brain Injury, Brain Injury Association of America, 2006.
Brain Injury Medicine: Principles and Practice, Nathan D. Zasler, MD, Editor, Douglas I Katz, MD, Editor, Ross D. Zafonte, DO, Editor, 2007, Demos Medical Publishing.
Mild Traumatic Brain Injury: A Therapy and Resource Manual Green, B, Singular Publishing, 1997
Textbook of Traumatic Brain Injury Jonathan M. Silver (Editor), Stuart C. Yudofsky (Editor), Thomas W. McAllister (Editor), 2004 American Psychiatric Press
Horn, L.J. & Zasler, N. (1996). Medical Rehabilitation of Traumatic Brain Injury. Hanley & Belfus, Inc: Philadelphia, PA.
Kay, T. Brain Injury Association of America. Mild traumatic brain injury, 1999.
GBYAY Anne McGinnis Breen
See my ponytail bouncing and my smiley face winking at you? &;>)
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Keep your faith, cherish your reason, treasure your mind and hold to your own good purpose...be not afraid!
