Ask Kathy M. Archives
A Collection of Questions and Answers from TBI Advice Expert - Kathy Moeller

Date: July 12, 1999
Topic: Therapy - Working With Doctors

Question:

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?

Joan


Kathy's Response:

Dear Joan,

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 However, all the questions have been archived and you can search the archives for more information.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!

Neuropsychological Assessment

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 areas.

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, at: http://www.tbimo.org/groups.asp

For information about Alzheimer's, you may want to contact the Alzheimer's Association at: http://www.alz.org. Hope this helps!

Kathy M.

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