Therapy for the Brain

Editor’s introduction: Brain tumor patients and their families have long noted a variety of temporary difficulties in thinking, changes in emotions or emotional response following brain surgery. It has always been difficult to talk about. The doctor says "you’re cured," but you feel that something is different. It makes sense that brain tissue, like muscle tissue, is injured by the surgery itself. Just as with muscle tissue, the brain requires time to heal.

Two recent publications have addressed this issue in constructive ways, identifying the issues and suggesting ways to get your brain back into shape.

Dr. Christina Meyers of the Department of Neuro-Oncology at M. D. Anderson Cancer Center has done extensive work with brain tumor patients, identifying the cognitive (or thinking) and emotional changes people sometimes experience, and developing strategies for rehabilitating the brain, similar in concept with physical therapy for the muscles. Her study¹ of rehabilitation of the brain following surgery for malignant brain tumors, was conducted at the Challenge Program at the Texas Institute for Rehabilitation and Research (TIRR). Most patients required treatment for one to four months. (See article below.)

In addition to her strategies for rehabilitation, the observations in this study are the strongest arguments seen to date for pre-symptomatic screening for brain tumors. Since slow-growing tumors tend to cause few deficits, and fast-growing tumors with intra-cranial pressure or the "mass effect" cause the greatest deficits, it will be important to deal early with cystic lesions, before they grow to critical dimensions. Imagine taking a lemon and putting it inside your skull. No matter where you put it, it creates intense pressure on every part of the brain.

Dr. Mark Sherer, a neuropsychologist who is Director of the Challenge Program and co-investigator for the study, concurs with Dr. Meyers’ opinion that some brain tumor survivors can benefit from focused rehabilitation treatments.

"The brain tumor patients in our program," says Dr. Sherer, "often have a more dramatic turnaround than the others we treat who may have had a stroke or suffered a traumatic brain injury. Some of their improvement is due to our teaching them a specific strategy, such as how to get around a memory problem or to impove communication skills."

"But, he continues, "another big part of the effectiveness of rehabilitation is due to a shift in thinking on the part of the brain tumor survivor. They shift from being a patient who’s having things done to them to being a person who feels as if they are more in charge of their lives. They begin to see some hope and to see that there are possibilities out there for them."²

Diane Roberts Stoler, a health and sports psychologist, who herself has sustained brain injury, created a reference guide for people who through automobile accidents, sports injuries, work-related accidents, physical assault, head trauma -- or brain surgery -- may experience mild traumatic brain injury (MTBI). Having gone through the experience of MTBI herself, Stoler set out to provide help and information for other MTBI survivors, their families, and their friends.

Both craniotomy (surgery inside the skull) and even stereotactic radiosurgery (without opening the skull) can produce mild injury to brain tissue, or swelling and pressure changes inside the skull, which will result in MTBI. The book offers practical suggestions for coping with the problem. Also covered are financial, insurance, and family issues; the rehabilitation process; and eventual outcomes. (See article below.)

1. A more complete article on this subject is C. Myers et al, "Efficacy of Post Acute Brain Injury Rehabilitation for Patients with Primary Malignant Brain Tumors," J. Clinical Oncology, 1997.

2. As quoted in M. C. Blakeman, "New Study Proves Benefits of Rehabilitation for Brain Tumor Patients," Search, newsletter of the National Brain Tumor Foundation, Fall 1996.

Rehabilitation Strategies

By Christina A. Meyers, Ph.D., ABPP, Neuro-Oncology, M.D. Anderson Cancer Ctr, Houston, TX.

The World Health Organization classifies the impact of neurological changes in three areas: impairment, disability, and handicap. Each is a separate question:

An impairment or deficit is a physical change, a disruption of a neurological connection in the brain that involves neurological, cognitive, and emotional changes.

A disability is a reduction in the ability to perform activities because of the neurological impairment. For example, a change in vision or perception caused by a right hemisphere brain tumor, which causes difficulties in visually scanning or inattention in the left visual field, may impair an individual’s ability to read, which is a disability.

A handicap is described as a disruption of the social role of the individual and the ability to function within the family system, at work and in society. Handicap is generally what is referred to when discussing quality of life.

The severity of the handicap depends upon the unique circumstances of each patient, his values, temperament, occupation, amount of family support, access to services, and so on. A person can be handicapped by a relatively small disability, or a rather severe impairment may cause little handicap. For example, disability in reading may not be particularly handicapping to the occasional reader, but might cause a secretary to lose a job. Thus all three levels of function (deficit, disability, handicap) need to be assessed for appropriate treatment of the brain tumor patient.

Neuropsychological testing is the method of assessing cognitive or thinking impairments caused by brain tumors and other neurologic illnesses. This testing is fairly comprehensive, since patients with lesions in different locations will have different types of impairments and there are different patterns of cognitive deficits association with radiation and chemotherapy effects. The functions generally assessed in the neuropsychological examination include attention, memory, reasoning, speech and language, visual-perception, executive functions (frontal lobe), motor coordination, and mood.

The tests should also address the specific concerns of the patient and family. Our survey of spouses and caregivers of primary brain tumor patients reported most concern with problems such as forgetfulness, inability to work, doing less housework, problems with reasoning and problem-solving, and lack of motivation. In contrast, the concerns least cited include difficulties with balance, walking, continence, dressing and speaking.

Because brain tumors such as the hemangioblastomas of VHL arise slowly, they usually cause milder and more variable cognitive impairments than do strokes in the same location. The rate of tumor growth is also important. Tumors that are extremely slow growing over years may give rise to virtually no cognitive deficits, while tumors with more "momentum", or a fast-growing cyst, may cause severe impairments. In general, cognitive impairments in brain tumor patients are related to the site of the lesion. Patients with left hemisphere tumors usually have lower scores on tests of language function, verbal learning and memory, verbal reasoning and right-sided motor dexterity, while patients with right hemisphere tumors have difficulties with visual-perceptual skills, building objects and left-sided motor dexterity.

Impairments of frontal lobe executive function (manifested by impairments of cognitive flexibility, abstraction, motivation, planning and organizational skills, ability to benefit from experience, personality changes, etc.) are frequently seen in brain tumor patients. One reason is that the frontal lobes make up one-third of the brain, so a large proportion of brain tumor patients in general have frontal lobe tumors. People with VHL very rarely have frontal lobe tumors, but they may also have executive deficits. This is due in part to the fact that the frontal lobes are connected to all other parts of the brain, and in part to the "mass effect" caused by increased pressure. Tumors in the cerebellum can cause disruption of the connections between the brain regions in addition to problems with eye-hand coordination. The effects of treatment (radiation and chemotherapy) generally cause problems with information-processing speed, executive functions, memory, concentration, and motor coordination. Table 1 describes the cognitive deficits attributable to the tumor versus treatment effects.

Many brain tumor patients experience increased emotional reactivity, lowered frustration tolerance, and reduced family functioning. One study found that 29% of patients were anxious and 21% were depressed. Mood and personality change tend to be separate from cognitive problems. The location of the tumor may also have an impact on the type of mood and personality changes that are seen.

QOL functioning of brain tumor patients cannot be separated from their family and social environment. The disease can cause changes in life-style and roles for family members as well as for patients. Uncertainty regarding the disease history and outcome is a source of stress for the family.

Intervention Strategies

Unfortunately, some brain tumor patients are unable to resume all of their normal actvitiEs following diagnosis and treatment. However, there is a great deal that can be done to maximize most patients’ ability to function at the highest level possible. Given the right support, most VHL brain tumor patients can improve their ability to function at home and in work and leisure pursuits, and enjoy an improved level of independence and quality of life (see Table 2). Relaxation and focus can be enhanced by biofeedback of Galvanic skin response or electromyographic feedback, or simply by relaxation therapy, meditation, self-hypnosis, and the like.

Pharmacological Strategies

Neurobehavioral slowing is very common in brain tumor patients. Stimulant treatment, such as Ritalin, can be useful in the treatment of concentration difficulties, slowed motor and cognitive function, and fatigue, and can help to elevate mood as well. Unfortunately there is not yet long-term experience with this agent to determine what doses are most effective and for how long.

Rehabilitation Strategies

Physical, occupational, and speech therapy. Rehabilitation strategies for neuro-oncology patients should be directed toward their specific disabilities and realistic future goals. These include physical, occupational and speech therapy to help regain function. For instance, approximately 15% of brain tumor patients have difficulties swallowing although many will not report specific complaints and may be at risk for aspiration and choking. Over one-third of patients have some speech difficulties at diagnosis, which may include word-finding problems, difficulties understanding speech, problems with reading or writing, or a combination of communication problems. This suggests a large role for speech therapy in the care of the brain tumor patient. Patients who have developed weakness or incoordination may benefit from physical and occupational therapy to help improve their ability to walk and perform activities of daily living.

Cognitive and vocational rehabilitation. A preliminary study showed that when brain tumor patients were given cognitive and vocational therapy, these patients required shorter stays, had less treatment costs, and better overall outcome in terms of independence and productivity compared to patients with traumatic brain injuries. Cognitive rehabilitation is designed to improve independence level. Vocational rehabilitation is designed to improve productivity, which may include volunteer work, performing household activities, going back to school, working at a modified job, or maintaining competitive employment.

Education, counseling, and support groups. Patient and family education is also extremely important. Even subtle cognitive and personality changes may have an adverse effect on social and vocational functioning. Patients who experience these symptoms may wonder if they are going crazy or inaccurately attribute their symptoms to other causes. Patients and families may feel isolated and alone or "unusual" in experiencing neurobehavioral symptoms. The more knowledge a patient and family have about the disease, treatment, and expected problems, the more effectively they can deal with the care of the patient. Even simple coping strategies, such as taking intermittent naps, writing notes, and taking special care to plan and organize activities, may be all that is necessary to effectively cope with symptoms. Support groups and counseling can also be very helpful in assuring patients and families that their experiences are not unusual, and help them deal with the grief, anger, frustration, and other problems that are frequently manifested over the course of the disease.

Lynn, a 26-year-old dental hygienist, was driving to work one morning when her car was rear-ended at a red light. The fifteen-mile-per-hour impact caused no damage to either vehicle, and the seat belt kept Lynn’s body in place. Only her head moved, quickly snapping forward and back. Lynn felt momentarily disoriented, but the feeling passed, and she went on her way without giving the matter much thought.

By lunchtime, Lynn had a severe headache. She discounted it as stress related. By evening, she also felt nauseated and extremely tired. At first, Lynn suspected a virus. But as the days passed, her headaches escalated and her fatigue increased. She also began to have problems sleeping, concentrating, expressing herself, and making decisions. To her patients, coworkers, and family, Lynn seemed uncharacteristically short-tempered and forgetful. Their continuing remarks to this effect led the puzzled young woman to see her physician. The eventual diagnosis? A mild traumatic brain injury (MTBI), a result of the months-ago incident at the traffic light.

Lynn’s story is not at all unusual. In fact, each year more than 2 million Americans suffer mild head trauma from falls, blows, collisions, sports injuries, and violent head movement such as whiplash. In addition, people who undergo brain surgery, or whose heads are treated with radiation, are similarly affected. Like Lynn, a significant number suffer debilitating aftereffects for months or years afterward – despite a perfectly normal outward appearance. Part One of the book Coping with Mild Traumatic Brain Injury will help you better understand this phenomenon by providing a detailed look at the causes, significance, and evaluation of mild traumatic brain injury (MTBI).

Part Two of the book covers specific physical symptoms and consequences of MTBI. We present information about the nature of each problem, why it occurs, and how it can be identified and treated. This will help you and your family to understand what you are experiencing, and to make informed choices about treatment.

Effects such as fatigue, headaches, dizziness, sexual issues, vision problems, hearing problems, sensory and metabolic disturbances, muscular and motor problems, and seizures are described, reasons explained, and strategies offered for alleviating the problem. We present here some excerpts from the chapters on Fatigue and Relationships.

Fatigue

"Prior to my MTBI, I maintained a very busy day. I would rise at 7:00 a.m., get my children off to school, go to the gym for two hours, have lunch, see five or six patients a day, and do supervision. After dinner, I would spend time with my family and end the night by writing progress notes on my patients until 11:00 p.m. Even at that hour, I had enough energy left to play my guitar and talk on the phone with my friends.

"After my MTBI, I spent the first two months sleeping nineteen hours a day. When I was up, I felt very fatigued all the time. Currently, my energy is limited to the hours between 8:00 a.m. and noon. By 1:00 p.m., the fog starts rolling in, making me feel inefficient or, at worst, spacy. By 3:00 p.m., my day is virtually over.

"I’ve learned to cope with my fatigue by doing my writing or other thinking activities in the morning, when I have more energy. On my worst days, I cook dinner at noontime for my family or have my sons Brad and Alan do the cooking. One afternoon a week, I update a grocery list that I store in my computer, and shop with my youngest son, Alan. He helps keep me on track at a low-energy time of day." – D.R.S.

MTBI fatigue has several different aspects. Each of them deserves attention during the treatment process. Sleep disruption may be the underlying cause of your exhaustion. Lost energy reserves may be the problem. Perhaps it is mental fatigue that troubles you the most. Or you may find yourself struggling with two of three of these problems. The following are a number of tried-and-true tactics to help combat each facet of fatigue. You may wish to experiment with a few of these suggestions to see which ones best help you maintain control over this bothersome symptom:

- To fight sleeping problems, go to bed at a set time every night, regardless of how you are feeling. Allot at least six but not more than ten hours for sleeping each night, and make it a point to rise at the same time every day, whether you have slept well or not.

- Limit your intake of fluids after 8:00 p.m. to avoid having your sleep disturbed by a full bladder.

- Avoid taking naps if possible. Brief snatches of sleep can play havoc with your body’s ability to get a full night’s rest.

- Take pain medication as prescribed to minimize the possibility of interrupted sleep.

- To cope with physical fatigue, organize your daily activities according to a priority list. This way, by the time you become fatigued, your most important responsibilities will have been taken care of.

- Avoid getting overtired. This can set you back for days. Pace yourself, take frequent rest breaks, and solicit the help of others.

- Vary your activities to avoid monotony, but do not try to tackle more than one task or activity at a time.

- To combat intellectual and emotional fatigue, avoid excessive stimuli such as sound and light.

- Acknowledge your limited thinking capacity, and use it wisely. Schedule activities that require concentration for times when you are freshest.

- Ration your mental energy carefully during a week that contains a big event.

- Use shortcuts. For instance, prepare a general grocery checklist on which you need only add or delete items. Ask a family member to draw simple maps of the places you need to go. Combat memory problems with a pocket-sized tape recorder, math problems with a calculator.

- Take periodic rest breaks. If you feel a wave of fatigue coming on, sit or lie down and relax.

MTBI fatigue strikes different people in different ways. That physically leaden feeling, that frustrating loss of focus, and the inability to get a decent night’s sleep are all common aftereffects of brain trauma. These problems can occur individually or in any combination.

Recovery from MTBI fatigue, which typically takes six months to a year, usually begins with a slow, sporadic return of surplus energy. As with many symptoms, you will start to have good days – but you will have occasional relapses that are difficult to predict. Often, the reappearance of a mental second wind in the early evening will be the first sign that your fatigue is beginning to abate.

There is no simple cure for fatigue, but using appropriate medication, modifying your surroundings and activities, and rationing your stores of energy can bring relief and a welcome sense that you are regaining control of your life.

Living with Someone with an MBTI

An MTBI affects everyone whose life is touched by the injured person, particularly family and friends. How these important people are affected, and the way in which they respond, can affect an individual’s recovery process and eventual outcome.

"My mother, who has had several strokes, is very understanding, because she has gone through many of the same experiences as I have. However, my extended family has offered limited support because they’ve done little to educate themselves about my problems. Sometimes I feel like I’m the caregiver and must enlighten everyone, and this is a burden I do not want. I want to feel free to just get better and get on with my life. My saving grace has been psychotherapy, my cyberspace confidantes, and my steadfast friends, who have accepted me and my unpredictability without judgment.

My husband and I have gone to marital counseling to help us cope with my MTBI. I’ve learned to accept my limitations, lack of reliability, and unpredictability. I’ve also discovered that it’s okay to have someone look out for me. My husband is discovering that my responses aren’t always reliable, and that it’s not productive to get angry when I do things that he feels are unwise or unsafe." – D.R.S.

Living with an individual who undergoes the personal changes associated with traumatic brain injury is not easy. It is important to remember that feeling anger or frustration at times is normal, and that despite these feelings, you deserve a great deal of credit for the support and assistance you offer daily. The following are a number of tactics that can help make it easier to deal with a loved one who has had an MTBI:

- Ask your loved one’s neurologist about the medical reasons behind the MTBI person’s behavioral and other problems. Simply understanding what is really going on may help reduce your frustration.

- Educate yourself about the nature of your friend’s or family member’s deficits.

- Realize that a person with MTBI passes through several very difficult phases during recovery. Learn about each stage and try to devise fresh approaches to dealing with it.

- Ask the brain-injured person about how he or she feels, and accept these feelings as real.

- Help the injured person set realistic goals and formulate strategies for achieving them. Track your loved one’s progress with a success log, and give him or her full credit for everything he or she accomplishes.

- Get to know the new person, and appreciate him or her not in comparison to the old person, but as a valid and worthwhile individual.

- Accept your frustration as normal, but express angry feelings to someone other than the injured person. Find other people in similar situations though support groups and on-line computer services.

- Avoid letting your physical or emotional reserves become drained. Discover what activities refresh and rejuvenate you, and schedule time every week to pursue them.

- Focus on the strengths and talents that your loved one still possesses.

- Help your friend or family member learn to live in the outside world again by taking walks together around the yard, neighborhood, and town.

- Find out about services that provide assistance to people with MTBI in the home, workplace, and community. Your local rehabilitation center can advise you as to the types of help that are available.

- Consider personal, couple, or family counseling if coping with your loved one’s MTBI is causing emotional or marital problems.

Finally, it is important to realize that you need not be solely in charge of your loved one’s recovery. Many types of assistance and support are available to you and the person with MTBI. If you are not sure what type of help you need or where to begin looking, call your state brain-injury association of the national office of the Brain Injury Association for advice and referrals.

Caring for a friend or family member after an MTBI is a huge undertaking, but you need never shoulder the job alone. The ordeal can be lessened by the realization that many postconcussive symptoms lessen with time. Dealing with a person with MTBI takes patience … patience … patience.

Coping Strategies From Coping with Mild Traumatic Brain Injury (Avery Publishing Group, 1998) by Diane Roberts Stoler, Ed.D., and Barbara Albers Hill.3

On with Living Again

There will be days when your judgment is off, when your memory is unreliable, or when you cannot seem to get past your pain. So too will there be times when you are able to function very well. Don’t forget that before your MTBI, you had good days and bad days, too. Remember that conditions as varied as the barometric pressure, hormonal changes, foods, medication, and the stress of daily living can affect you. Be kind to yourself and use your energy wisely – but don’t be afraid to live life. Mourn the loss of the "old you" and enjoy learning all the good things about the "new you". Take a few risks, find humor in everyday things, and reconnect with friends and family at your own pace and on your own level.

The words of the Serenity Prayer provide excellent advice to help you forge through adversity to a new quality of life: Accept the things you cannot change, change the things you can, and try to recognize the difference. Here’s wishing you life, and living again!

3. Excerpted and adapted from Coping with Mild Traumatic Brain Injury (ISBN 0-89529-791-4) by Diane Roberts Stoler and Barbara Albers Hill, ©1998, pages 5, 49, and chapters 4 and 24. Published by Avery Publishing Group, Inc., Garden City Park, New York, 800-548-5757. Used by permission.