Has anyone undergone neuropsychological testing? What to expect? Anxious. . .

[Hokiegal]

I am 2+ years post-op, and recently underwent a full day of neuropsychological testing.  Will get the results this week.  During the testing, the technician offered several comments that lead me to believe she noted cognitive / memory deficits.  I am very concerned.  I returned to work full time four months post-op, and have struggled to keep up ever since.  I work as an engineer in an R&D environment, and it's very fast-paced, multi-lingual, and detail-oriented. 

Has anyone else had this type of testing?  What can I expect when I see the doctor?  If there are deficits, as I suspect, is there any kind of rehabilitative therapy to help me cope with or overcome those deficits?  I'm too young to retire, and finding a less-demanding job in my company really is not an option.  My husband retired before my AN, and he tends to freak out at even the notion of my having issues impacting my ability to work.  Any suggestions on what to ask the doctor?  Will things improve with time?  I really want to keep working but I'm very concerned.  Thanks.

[arizonajack]

My husband retired before my AN, and he tends to freak out at even the notion of my having issues impacting my ability to work. 

You have the brain tumor and HE's freaking out because of a potential loss of your income???

Give me his phone number so I can set him straight.

 

[jak1]

Hokiegal,

I have gone to testing twice.  I have reduced abilities and also worked in an intense and demanding field.  I am more than willing to talk a out everything with you.  PM me any time.

also, agree with arizonajack, how is he the one to worry? unless there is more information here..

regards,

-JAK

[SDTom]

Hi Hokiegal,
I went through about half day of testing with a Psychiatrist and what we found at that time was it seemed my intelligence was not affected but I was considerably slower than average at most tasks. It could be entirely different for you.
Tom

[Hokiegal]

Thanks for the responses, y'all.  Tom, I suspect my results will be similar to yours -- I am considerably slower at word retrieval and fact retrieval than before.  It's like I'm playing Jeopardy, and I still know as many responses as before, it's just that I'm on a five-second delay in retrieving the answers.  Short-term memory is also shot.  In some cases, I am completing entire studies at work, correctly, with no recollection of having done so.  A few days later I'll start the same analysis, only to find in my notes that I have already done it.  It's very disturbing.  I even asked the neurologist if this is early-onset Alzheimer's, and after a short test, he (thankfully) concluded no.  But I was so tempted to tell him the president of the United States is Ronald Reagan, just for fun 

I'm hoping that a) there is a relatively benign non-AN explanation, such as medication or fatigue, or b) if it is AN-related, that there's some way to improve matters.  I really haven't had much of a vacation since all this started, so fatigue is a real possibility.

As far as my husband's concerns, I didn't word that very well.  There are other issues in play.  I think it's like this -- if those tests show cognitive decline, to the point where my ability to work is compromised -- that makes all this real.  We've been focusing so hard on the physical recovery process, and have done so well.  We haven't really taken time to deal with the "other" issues.  He has seen changes in me, dating back a few years before the AN diagnosis, and it scares him that those changes might be permanent.  It scares me, too, but I've been through some pretty tough situations in life, and God has always been faithful.  So I tend to take the eternal perspective.  He's not quite at that place yet.  So thanks, Jacks, for the support; he's really an OK guy who just wants to see me get "well" 

Jak, I'm sending you a PM. I appreciate your willingness to share.

[SDTom]

What I have been told is that the brain is doing things it is not used to. So it has to compensate with memory loss, and other things. I think it is improving but it may be slow. You may be in a situation where you are being asked to do more at this time than you are comfortable with.
Tom

[Echo]

I had Gamma Knife 6 months ago so my situation is different from those of you who have had surgery.  I also work in a very detailed and reasonably fast environment.  I have noticed a very definite slowing down in my ability to process details some of the time. For me there is a definite link to how wonky I'm feeling, how tired I am and how it effects my cognitive skills.  When I am well rested I am much better overall.  I have balance issues and some occulomotor problems so my brain is pretty busy dealing with all these things. I have to agree with Tom, I think our brains are working on overload for so much of the time that other area's slow down a bit.  I'm optimistic that with time, all our symptoms will improve!

Cathie

[Brewers7]

I am 5 years post op.  I work as a felony court prosecutor (also at times a very fast paced job).  After my initial surgery,  I had many complications, so I spent 2 months in The Shepherd Center in Atlanta, a rehab facility in Atlanta that specializes in brain and  spinal cord injuries.  During my time there, I had an initial and final neuropsychological evaluation.  They did not recommend that I return to a high stress position.

I returned to work part time about 6 months post op.  At that time, my attention span was definitely deficient and I was easily irritated.  I did not return to trial work for about a year.  I now joke that my brain has dial up service.  The hard drive is still there.  It just takes a little longer to access.

I have had no further rehab in this regard.  For the most part, I have adapted by recognizing that I cannot multi-task as well as I once did.  I write more notes to myself to compensate.  In an effort to minimize stress, I stopped taking murder, rape, and child abuse cases.  I still assist the new prosecutors with those.

Most problems have improved with time.  Also, I have adapted to the others so that I can be an asset and not a liability in my job.  I hope that things work out as well for you.

[Hokiegal]

Thanks, everyone, for sharing your stories.  Isn't it interesting that several of us are experiencing similar issues.  Some had surgery, some radiation, but similar issues.  Looking back on my own journey, I'm convinced my cognitive changes started prior to diagnosis.  In other words, from the tumor itself.  The surgery and resulting loss of hearing and vestibular did not help, of course.  But this started before the surgery. For some reason, that's very important for me to understand -- engineer to the core, I suppose.

There has been huge improvement since the low point immediately post-op, and sometimes it's easy to lose sight of that.  Regardless of the test results tomorrow, I will hope for continued improvement -  hope, in the sense of patient expectation.  You all have helped me see that there are things I can do while I wait.  I can focus more on getting enough rest.  I can probably restructure my work to some extent, and multitask less.  I can give this time and let nature continue the healing process.  Yes, there are things I can do, and I'll learn more tomorrow.  Like my signature line says, life is not a snapshot.  That's from a wonderful song called "Before The Morning", by the way. 

So ready or not, test results tomorrow!  Followed by a shopping trip for new running shoes.  I plan to run a mile on my 50th birthday, coming up in a few months.  I've never run a mile before in my life.  Not yet anyway

[Sequimite]

I was a CFO. My first signs of cognitive problems was dyslexia in the summer of 2003. I started transposing letters while typing and even transposed words, or had a seemingly unrelated pop up in place of the one I wanted. I was diagnosed in November 2003 with a 3 cm AN on the left side. I asked at least six AN specialists about my cognitive issues and none of them associated it with the AN. In January 2005 I hit a point where I could barely read. Light fiction was not a problem, trying to reread more challenging material that I had previously read multiple time proved impossible. Fortunately my reading improved slightly before cyberknife surgery in March 2005 (successful, shrinking ever since) and has been bad stable since, albeit at a low level.

Balance difficulty is associated with cognitive impairment. The head of the Vestibular Lab at Washington University told me that this works both ways, that he could make someone fall over by giving them a difficult mental task. I talked to researchers at Harvard and MIT who were working on this issue for NASA, trying to deal with what astronauts call the "space stupids". At that time all the research money in the US was focused on short term effects and none of the people I spoke with were aware of long-term connections.

Casting the net wider I found that scuba divers who logged many hours often ended up with permanent balance and cognitive problems. Finally I found a researcher at the University of New Zealand who published "Does Vestibular Damage Cause Cognitive Dysfunction in Humans?". He did rat studies and surveyed all the human research then available and his answer was "YES". As we are all left with permanent vestibular damage the distinction between "short-term" and "permanent" is moot.

I have had neuro-psych testing at least 6 times and the big "tell" is paired word memorization. I can recite the first two pairs easily but can never learn another pair no matter how many times they are repeated. I had to go on disability as, not only was juggling two balls as opposed to two dozens grossly inadequate for my job, but it proved inadequate to any task I had ever performed as an accountant. Even data entry was very slow and difficult since I couldn't keep track of what line I was on. IQ has never changed, though.

I may be unusual in that I had another condition known to sometimes cause damage to the hyppocampus (short-term memory center), sleep apnea, and later developed Menierre's disease in the non-AN ear. I think there is no doubt, however, that everyone with an AN suffers some degree of cognitive impairment.

[Echo]

Hi Sequimite,

What an informative and interesting post! I agree with many of the points you raise.  I do believe that our AN's (or the stress they put on our brains) are capable of causing cognitive challenges.  When I was first diagnosed in 2012 I noticed I was having some issues with dyslexia when typing.  I actually posted on this forum asking if others had the same problem and I received several emails confirming they did. I asked 3 different neurosurgeons about this.  Two told me they did not believe the issue was connected to my AN and the third (my own neurosurgeon) told me he believed anything was possible when it was brain related, he would not rule it out.  I can tell you I still have the problem and at work I am constantly double checking the data I enter when working on projects - transposing numbers for me could equal very costly mistakes.

There's also the issue of what I call the "fuzzy brain days" or "wonky head" which probably are equivalent to the "space stupids".  Thankfully I don't have those days as frequently now, but I do have "fuzzy moments" within a normal day.

I'm very glad to hear that you've had successful shrinking and stable results post CK.  I wish you well in any areas you still struggle with.

Cathie 

[Sequimite]

It is a simple proven scientific fact that if you are having a balance problem you are also having a cognitive problem.

It seemed strange to me that none of the doctors I saw were aware of this, but then I realized that ANs were a small portion of what these doctors dealt with and the least dangerous. This was driven home to me during the times I sat in the waiting room and realized that for many of those around me, Cyberknife was a last desperate attempt to halt terminal cancer rather than one of the better, among many, treatments for AN.

[jak1]

Sequimite,

I have a very similar story to yours.  It is discouraging how quickly some doctors dismiss the effects of AN symptoms for some reason.  I agree that it must be they see terminal patients and hence the magnitude does not feel the same to them.  However, they do not face your challenges everyday and try and use your abilities to accomplish the tasks you completed successfully before the AN symptoms arrived.

I 100% agree and understand.

[saccadiceye]

I've had two neuro-psych tests. The first was taken approx. 6 months post-op. The second was taken about 14 months post-op.

My verbal memory is below average, and my visual memory is impaired. The tumour was located in my left cerebellar hemisphere. This part of the brain supposedly has some visual responsibilities. Maybe this explains the poor visual memory scores? However, both areas have improved since the first test. My intellectual functioning is supposedly high average. However, I find my day-to-day cognition to be a lot worse compared to when I was in university (2 years ago). I suspect my visual-vestibular issues have caused my mind to go a little fuzzy.

I also continue to have issues relating to eye tracking, and dizziness. My saccadic eye movements have made simple exercises like reading nearly impossible. While my dizziness has made full-time work out of reach for me. I suspect that these issues have affected my cognition as well. Lucky for me, I have noticed substantial improvement in these areas since my surgery. However, they still continue to negatively affect my quality of life. 

[Hokiegal]

Hi everyone, it's been a while since I posted, but I wanted to share some of what I learned from the neuropsychological testing.  The testing psychologist's observations included "borderline deficits in visual attention and adaptive problem-solving, within the context of an otherwise average to well above average profiile".  The visual test consisted of a written series of random numbers, and I was to circle all the 2's and 7's.  At first, the test was not timed, and I did fairly well when I could go at my own pace.  Then the test was repeated, but with a time limit that I could not meet -- in other words, I was rushed -- and I failed to see most of those 2's and 7's.

She then went on to note relative strengths, including verbal and visual memory, and working memory.  It was very surprising to me that on some of the tests I felt I did well in, such as listening to "nonsense" words and then selecting the word I thought heard from a list, I actually scored poorly on.  For instance, if the spoken word was "tasp", I heard "tast" (nonsense words).  Conversely, I was very surprised that working memory was noted as a strength, although I have to wonder how I would have tested on another day when I wasn't so well-rested.  She concluded that "subjective memory problems may be due to the above noted deficits in visual attention along with her hearing loss".  So it seems the core functions are intact, but the brain is processing visual and auditory inputs incorrectly.  Her recommendations included slowing down at work, less multi-tasking, and recording important meetings so that I can play them back later -- and if that's not possible, to find another job. 

I also shared the test report with a psychiatrist who specializes in learning disorders, and he agreed with the notion that hearing and/or visual impairment can affect cognitive function. He also added vestibular loss to the list.   He talked about "dichodic hearing", or hearing on both sides, and how losing one side can affect everything -- emotions, cognitive function, and processing of visual and auditory inputs.  He referred me to a DVD series called "Understanding The Brain" by Professor Jeanette Norden of Vanderbilt University, which explains all of this in great detail.  (It's available through thegreatcourses.com -- pricey, but currently on sale!  - I hope it's okay to mention that here.) 

He went on to explain the role of sleep -- how the amount of energy the brain can store is minimal, so deep sleep becomes very important, because that's when the cortex recharges.  And the 2nd phase of sleep (after the first four hours) is when memory is stored.

So what to make of all this information?  And what can I do to help myself?  Unilateral hearing is here to stay, at least until the next medical / technological breakthrough.  Vestibular nerve -- severed -- although I have renewed my commitment to exercise, vestibular and otherwise.  Vision -- the teary, blurry, AN-side eye -- now maybe that's something we can work with, and I have (finally!) found a neuro-opthamologist who seems very knowledgeable about AN (I quizzed him, haha!). 

So finally -- confirmation that this isn't all in my head (or, actually, it is, but it's real).  I'm working on my sleep habits.  And the neuro-opthamologist believes he can help my teary eye.  Maybe there's hope after all

I hope this isn't too much information, but I do hope that something I learned helps someone else.