|Date: July 12, 1999
Topic: Therapy - Working With Doctors
Dear Kathy M.,
My husband had a brain tumor removed several months ago and is
now experiencing memory problems. He is 60 years old. His neurosurgeon
seems confident that the problems are not from the brain surgery
and is suggesting it might be early Alzheimers (dementia). I don't
know how to deal with this information. It seems clear to me that
his short-term memory has degenerated dramatically since the surgery,
but since neither the doctor nor my husband seems to think so, I'm
not sure what to do.
My husband is also in what looks like "denial" and the information
the neurosurgeon gave him/us seems to make his denial worse! We
have been to a local support group and the feedback we are getting
is that the brain surgery probably caused the memory problems. Now
I'm the one who is confused!
He is also experiencing seizures. The neurologist who prescribes
his Dilantin is non-committal on the issue (can't tell why). I think
I want my husband to have what I have learned is a "neuropsychological
assessment" because I am told that this will tell him/us what we
need to know. I'm hoping this assessment will tell us what he/we
can do about his memory problems. What do you think?
I'm not a doctor so I cannot give you a medical opinion. You may
want to also address these questions to "Ask a Doctor," which is
also on this site (Go to the following URL: http://www.tbimo.org/askdoc.htm)
* The "Ask a Doctor" section of the site is no longer
taking questions. However, all the questions have been archived
and you can search the archives for more information.
What I can tell you, from the perspective of someone who has brain
injury and networks extensively with others with brain injury and
their families, is that a number of people with brain injury and
many of their family members have told me similar stories! I think
it may have to do with the fact that some/many brain surgeons (neurosurgeons)
and some/many neurologists have little or no experience working
with long-term survivors of brain injury!
I am told that they get little education in the area of brain injury
rehabilitation in medical school, and also that they often do not
have first-hand experience in their practices with cognitive rehabilitation.
It also appears that some neuropsychologists specialize in testing
people in the early phases of recovery, so some of them do not know
many/any of us who are, say, five or ten years post, and have successfully
"battled back." This presents us all, as a community of people interested
in brain injury rehabilitation, with some problems!
Yes, a good neuropsychological assessment (generally a "paper and
pen'" test or a computerized version, such as the MicroCog), should
measure what is not working, in terms of cognitive function (which
includes memory). These assessments are normed against the general
population (people who do not have brain injury or memory impairment).
You will get "scores" that are in the form of percentiles. You should
also get recommendations about some options for dealing with weak
In my experience with neuropsychological assessments, they will
tell you the nature of, and the extent of problems related to memory
and other cognitive issues, though it may take more work on your
(and your doctors') part to make a determination about whether the
problems were caused by the brain surgery or some other cause. Early
dementia comes to mind. Presumably, between your doctor and a good
neuropsychologist, you can either determine or rule our early dementia.
What to do about memory impairment?
If this were a situation with someone in my family, the crucial
question I would ask is, "What can we do about the memory impairment?"
Now, if cognitive problems have been caused by the brain surgery,
teaching your husband compensation strategies will likely help.
I don't know much about dementia (Alzheimers), so I don't know if
compensation helps with this or not.
The value of networking
I hate to sound like a broken record on this point, but the only
thing I can think of to suggest is that you start networking with
others who have family members who have had brain surgery and ask
them what their experiences have been. Now, this is time-consuming
(could take months or years), and you will have to ferret out information
that is helpful and not helpful. But it's the only thing I can think
of if your doctors are giving you information that is not confirmed
by your experience and/or the other research you are doing.
Another source of information is the Brain Injury Association (national
and state levels). They are usually a good source for information
when you are getting what seems to be conflicting information. The
national Brain Injury Assocation's web site is: http://www.biausa.org
and State associations can be found at: http://www.biausa.org/States.htm.
If you want to network with other family members or persons with
brain injury who may have experienced the same kinds of questions
you have, see the e-mail support group list this site has compiled,
For information about Alzheimer's, you may want to contact the
Alzheimer's Association at: http://www.alz.org.
Hope this helps!