Answers to your personal questions from someone who cares........

PAT'S RESPONSE:It sounds like your dad is a pretty interesting guy who can still do a lot of things and has some big dreams. Usually what I recommend is for the family and the patient to visit several facilities to see which one is the best match for the patient. You and your father will better be able to judge if a facility is a good match for him than any "expert." If your dad does need 24-hour supervision or cannot be left alone, it may be necessary for you to use an adult care facility even if it’s not the "best" possible option. A less restrictive option may be to locate mentors or other people that can work with brain injury survivors one-to-one. Find out if there are local brain injury support groups. Often these are the best sources for ideas and information since they consist of survivors and family members who have gone through similar situations.

 

On the other hand, if your father only needs minimal supervision your family may be able to help out a lot. Most people very much prefer the company of their family to the company of strangers. If you, your sister, and your aunt all work during the day, perhaps you could hire someone to provide in-home or part-time supervision. Maybe as your dad recovers, he will require less supervision during the day and can live with a family member without the need for daytime supervision.

Consider consultation with a physiatrist or neuropsychologist who may be able to assess your father’s strengths and weaknesses, suggest an appropriate level of care, and refer you to the necessary resources.

PAT'S RESPONSE:One of the things family members want the most is for their loved one to be back "they way they were." I would love to tell you that with enough therapy, love, and prayer that is what will happen. Unfortunately, total recovery rarely happens after a serious brain injury. Persons with brain injury followed for 10, 15 or more years often continue to report problems associated with their brain injury. Many are unable to return to work. The other thing to keep in mind is that the fastest recovery takes place in the first 6 months. Further recovery often occurs, but it can be a slower process. Recovery occurs at its own pace. It is important to view recovery on a day-to-day basis rather than to compare things to way they were before the injury. Goals should be set based on your brother’s current status. I’ll bet that if you look at where he was back in December, you can see some progress from where he was. Some families like to videotape things so they can look back two or three months to see if progress has been made. Many families are amazed at how much progress they didn’t see – because they kept thinking back to "the way the person was" instead of appreciating how far the person had come already.

 

The best thing you can do for your brother is to continue to spend time with him, talk with him, and encourage him. Even though he may have trouble talking, it sounds like he can hear you and I’ll bet he appreciates the time you spend with him. Talk with the hospital staff to see what you can do to help. If your brother can communicate through gestures or writing, use those and don’t get frustrated by his not talking. It sounds like the doctors are saying that your brother had a very serious injury = a kind that often occurs when the brain is jostled around during a motor vehicle accident. (Try shaking an egg really hard and then cracking it. The yolk and whites are all mixed up. It’s a similar thing when the human brain gets shaken really hard during a car accident). Given the injury you describe, the length of time since the injury, and the symptoms you describe, I expect the doctors are correct in saying that he won’t ever get back to the "way he was." But that doesn’t mean he won’t improve. It doesn’t mean his life doesn’t have meaning or value. It certainly doesn’t mean you should give up hope. Just be realistic about what you hope for.

PAT'S RESPONSE:What don’t you believe? If you’re still having symptoms after 2 ½ years, your physicians are probably right in telling you that you’re likely to have permanent effects of the injury. Getting back to "just the way you were" before the injury is very unlikely. You might continue to see improvements, but after that long post-injury, the improvements are likely to be slow and gradual. If you don’t believe your physicians are exploring all the options, by all means get a second opinion. It never hurts to consult another expert. (Well, it might hurt your wallet if your insurance won’t pay for it.) You might want to consider a specialist in pain management. If you haven’t already done so, consider a neuropsychological evaluation to explore your strengths and weaknesses. Being an accountant is probably one of the most difficult things for a person with brain injury to attempt. It’s a job that requires a good memory, good math skills, sustained attention, organization, stamina and the ability to attend to details. However, if your symptoms are primarily sensitivity to light and sound and balance, maybe the skills you need for accounting are strong enough for you to return to it as a career. If your skills won’t allow you go back to accounting, consult with a vocational rehabilitation expert or consider career counseling to look for options that will fit with your abilities and interests. Only by knowing your strengths and weaknesses and being realistic will you be able to make an informed decision about your future.

PAT'S RESPONSE:It certainly sounds like a complicated case! The Chiari malformation (Also known as Arnold Chiari Malformation) is an anomaly in which the brainstem and cerebellum protrude into the spinal canal. It is congenital (meaning people are born with it). I am unaware of any cases that resulted from injury. It can also be associated with other anomalies such as syringomyelia, spina bifida, and hydrocephalus. Many people experience symptoms beginning in infancy, but in other cases there may not be symptoms until adolescence or adulthood. Symptoms can include vomiting, muscle weakness, problems with arm and leg movements, or cognitive difficulties.

 

Hyrdrocephalus is an accumulation of cerebrospinal fluid (CSF) in the ventricles in the brain. CSF helps to protect your brain and spinal cord against injury, contains nutrients for your brain, and carries waste products away from surrounding tissues. When CSF is not absorbed as fast as it is produced, it can build up causing the ventricles to enlarge and the pressure inside the head to increase. In your case, hydrocephalus may be associated with the Chiari malformation, although some types of brain injury can cause it as well.

As for your symptoms, it is hard to distinguish what extent your injuries may have contributed to your present symptoms. Although most people recover fully from concussion injuries, there are some people who experience permanent problems. I’m not clear from your question if you have experienced symptoms over the 16 years since your injury or if your symptoms began with your 1997 headaches. If you were not having problems prior to 1997, I would suspect that symptoms are likely unrelated to your concussion 16 years ago since constant or severe headaches are common symptoms of both Chiari malformation and hydrocephalus. There is really no way to know for sure if your brain injury contributed or not.

Also, while surgery is often successful in alleviating symptoms of Chiari malformation, surveys of patient outcomes following surgery show that about 66-80% show improvement. However, that means that up to a third of people following surgery may have continuing symptoms or even deterioration. There is still a lot to be understood about Chiari malformation. It is extremely important that you continue to be followed by physicians who can track your progress. Sometimes hydrocephalus recurs. Please talk to your physician, neurologist, or neuropsychologist about your symptoms and concerns.

For more information about Chiari Malformation, Wake Forest has an excellent list of links with a TON of information. The link to their site: http://isnet.is.wfu.edu/bgsm/surg-sci/ns/chiarisyrinx.html. Good Luck!

PAT'S RESPONSE:There is an article on a website that provides a description of methods for their coma stimulation program. I would caution you that there has been very little independent research on the effect of stimulation on coma recovery. In other words, while it seems promising and the people who use it cite positive results, there hasn’t been a lot of good research to show whether it is really effective or not. The article below cites some statistics for coma recovery with sensory stimulation, but remember that most people emerge from comas anyway. Critics also argue that the types of brain injuries resulting in coma are unlikely to be affected by sensory stimulation, and that most patients who emerge would have emerged with time anyway. Sensory stimulation has also been criticized for fostering family members’ unrealistic hopes for recovery.

 

A review of the area by Joseph T. Giacino concluded that "It is evident that when existing studies on sensory stimulation are analyzed according to scientific evidence-based parameters, there is very little adequate research concerning the effectiveness of sensory stimulation." He concluded, "At present, sensory stimulation should be considered an option for patient management. This implies it is incumbent upon the clinician to clearly elucidate to family members the high degree of uncertainty associated with this form of treatment."

The website with a description of a sensory stimulation program for coma recovery is:

http://www.comarecovery.org/comarecoveryprogram.htm

The review article citation is:

Giacino, J. T. (1996). Sensory stimulation: Theoretical perspectives and the evidence for effectiveness. NeuroRehabilitation, 6, 69-78.

Any university library should be able to obtain a copy of this article for you through an inter-library loan program if they don’t carry this particular journal.

DEAR PAT:My daughter, Emma, was diagnosed with a medulloblastoma at the age of three. The tumor was removed and she has had radiation and chemotherapy. I want to learn more about how to help her in her academic career, which at this point in time is questionable. She has processing, speech and language problems. At this point, I rely heavily on her special education teachers but they do not have a lot of experience with children with brain injuries like Emma’s. It was suggested that I talk to someone that has dealt with brain injuries to see how we can give Emma the support she needs academically. A psychologist that evaluated Emma suggested that Emma cannot be measured by her peers and that she does not have developmental delays so it would be harder for the special education instructors to help her. Emma will have to figure out how to learn with the guidance of the special education teachers. I feel she will benefit if I could also give her support, but my background is not in education.

PAT'S RESPONSE:Pat knows some doctors with "questionable" academic careers! But that’s not what you mean. Anyway, Emma should have a comprehensive neuropsychological evaluation. I can’t tell from your question how old Emma is or whether the "psychologist" was a neuropsychologist or not. I also can’t tell if the psychologist worked for the school or not. Let me explain the difference. Most clinical child psychologists conduct psychological evaluations that usually consist of an IQ test, and an assessment of behavior or emotional adjustment. Many psychologists also do an achievement test that can help to diagnose learning disabilities. A neuropsychological evaluation may include these types of assessments, but will also examine memory skills, motor skills, attention and concentration, and visual skills. Be sure that when you look for a neuropsychologist, you ask about their training. In many states, any licensed psychologist can claim expertise in neuropsychology, so ask about where they received training and supervision in neuropsychology. This type of evaluation should provide a comprehensive analysis of Emma’s strengths and weakness. In addition, the neuropsychologist should be able to provide specific recommendations to you and Emma’s teachers about how she learns best and what her limitations are likely to be.

 

Also, if the psychologist is associated with the school, then I would encourage you to get an independent evaluation done. Most school psychologists are outstanding, but they also work for the school. Schools often have a vested interest in keeping their costs down and sometimes don’t like to provide a lot of "extra" services to children who need them. Some schools are better than others. However, public schools are legally required to provide needed accommodations to children with disabilities under the Americans with Disabilities Act (ADA). An independent psychologist or neuropsychologist will be able to help you assess whether the school is providing all the needed accommodations or not.

Finally, yes you should absolutely help Emma as much as possible and give her as much love and support as you can. Talk with all of her teachers regularly about her progress. Talk to Emma about how she is doing. Find out if there are tutors in your area that specialize in working with learning disabled children. Encourage Emma to participate in activities outside of school as well so she can develop other friends and interests. If Emma struggles in school, it will be important for her to have other activities and life experiences she can feel good about to boost self-confidence. It sounds like she has a good parent looking out for her best interests!

To the person looking for an opthamologist for occipital cortical blindness who is associated with a neurosurgery center:

You certainly know what you’re looking for. I don’t know anyone with the particular specialty. However, since I think you were mailing from Colorado, I would suggest you consult the Division of Neurosurgery at the University of Colorado. They might be able to better direct you. Their web address is:

http://www.uchsc.edu/sm/sm/surgery/neurosur/