Cognitive problems

[bluestar]

Thank you. The link worked beautifully and I was able to print it as well as saving it.

Thanks again.

[kbwright]

Transposing letters seems to be part of a general cognitive problem with sequencing that also manifests itself in my saying the wrong word, retreiving the wrong memory information or going astray in working through a logical sequence. Another manifestation is difficulty in concentrating and I am particularly concerned with difficulties reading at a high level. By this I mean that very light reading for entertainment isn't a problem but tackling a book that I previously found challenging now seems close to impossible.

It is so reasurring to hear your description of cognitive problems. When I asked my ENT and the Neurosurgeon about cognitive problems they did not seem to think there would be any such problems. You have given me the validation I have been looking for! I have been in conversations when the word will not even come out of my mouth, then my brain goes blank. The "dizzy" episodes are also hard to describe. I am not really dizzy, I feel jittery inside. And this is all intensified when I have any level of eye strain, from reading or being on the computer for too long.

Have you received any advise in this area? Will these symptoms settle down? I have been taking a low dose, .5mg, of Ativan and that really helps, but it only lasts about 6 hours.

Thanks for sharing the kinowledge and information you have gained.
KB

[Becky]

I experience the same problem -- groping for words at times.  The only thing I can suggest is to exercise it. 

I type at work, and sometimes when I hear a dictated city and state, I'm not sure how to spell the city.  So, I can open another window that runs a program whereby typing the zip code brings up the city and state.  I find that by the time I get to the other window and initiate the software to the point where I type in the zip code, I have forgotten the numbers entirely!  I could just use a copy/paste option, but I continue attempting to memorize the number.  Sometimes I can, but sadly, most of the time I cannot.  I still try, tho.  It can't hurt to exercise my memory in that regard.

I wish something could cure these issues, but I don't think so.  Ginko biloba has been said to help some, as it increases blood flow to the brain.  There are other herbs out there (check with your doc, tho).  Maybe some type of supplement and exercise can help (crossword puzzles, etc.). 

Becky

[bluestar]

I have been doing crossword puzzles and this has resulted in an improvement. Also I can notice the patterns. For example when I am tired I just can't find the words but when I wake in the morning and go to the same puzzles the answers come so much more easily.

I have been doing the puzzles for almost 3 months now and I think there is an overall improvement in finding words.

I have also decided that I am not going to force myself to go anywhere that is crowded or very noisy as I can't hear and have to force myself to talk etc - and then I can't find the words because the fatigue has taken over.

Good luck to you Becky.

[Becky]

Thanks, Bluestar.  Good luck to you also, on your journey.

Sincerely,
Becky

[Kim]

I started swithching characters before surgery.  I would look at my computer screen at work and SWEAR I saw a certain date or number, look away, and when I looked back it was different.  Pretty scary, since I'm a legal accountant!

[Joy]

Kim,
That has happened to me also!  I could swear I saw something but it turns out to be a different thing or nothing at all.  I am glad I am not goofy after all. 

[gregpstone]

Well my latest MRI shows the tumor growing so I'm going to get treatment. I edited my original post to start this thread because I had stated that my surgeon recommended surgery as gving the best chance for long-term improved balance. In fact my surgeon, Dr. James Bennecke, has the opposite opinion - he thinks gamma knife gives me the best chance. I remembered wrong (blame it on the tumor), it was Dr. Rigimonti at Johns Hopkins who expressed this opinion and even he was rather tentative; it seemed as if I was the first person to ask him about cognitive issues relating to balance.

Looking back to the 1998 ANA Member Survey of long-term problems after treatment, I note that almost twice as many surgery patients reported balance/dizziness, almost three times as many surgery patients reported memory problems and five times as many surgery patients reported concentration problems compared to GK patients. The survey is not intended to be a scientific study but we have to make do with what data is available.

Dr. Bennecke's assessment echoed my own, he said that the only advantage of surgery was having the tumor gone and for some people this was important enough to justify surgery's higher rate of morbidity. The clincher is, if evidence develops later that cutting/killing the nerve is the best way to go, that can be done with a relatively simple surgical procedure. So I'm going down today to visit the GK folks at St. Louis University and schedule getting Guido zapped. I'll report back on the cognitive outcome.

[Becky]

Visual input and vestibular function go so hand in hand!  There were a few times when I didn't see something that was part of what I was reading!  Later, I saw it.  It IS scary.  But, knowing you're not alone and that it is 'par for the course' for us AN-altered survivors, does help!

Strobe lights at this point in my life are sickening!  I haven't actually been around one, just from watching a movie that had a rather lengthy strobe light scene ... couldn't handle it !!

Becky

[treefarmer]

Hello All,
I'm 47 years old, 13 months post proton beam radio-surgery. I had some cognitive problems for perhaps 6 months after treatment. One of the strangest was that I would not refer to myself in writing. i.e. the sentence above would have read "Had some cognitive problems" instead of "I had some cognitive problems", very weird. Things seem to be back to normal now for the most part. While I still have the occasional memory lapse I'm not sure that it can be attributed to my AN. I'm a design engineer that relies on innovative solutions to problems for my kids tuition. I've had the usual mix of headaches, dizziness, fullness, etc... The only serious ones remaining are headaches and some difficulties sleeping.
My experience with my AN has been to refocus my life on the truly important issues. My relationship with my wife is better than ever, and it has always been good. It did force me to make some adjustments. I consciously pay more attention to the details, which has made me better at my job. I actually use the PDA that I bought 3 years ago but never really used to its potential. I also narrowed my activities. I used to have a treefarm that I have given up for the most part. My energy levels are still way off from what they used to be. But because of that I've learned to relax more and enjoy simple pleasures. The treefarm is slowly being replaced with a 3 hole golf course (part of my vestibular therapy, hehe)
I consider myself lucky. I was fortunate enough to live 50 miles from one of the greatest concentrations of medical talent on the planet at a time when treatments have been developed for this thing in my head. Another time or place and I wouldn't have been so lucky. It also keeps things in perspective when you go in for your follow up MRI and you see a 10 year old cancer patient in a wheelchair go by.
Life is good.

[SorchaC]

Hi all.....

Well I have to say that I have experienced severe cognitive problems since the removal of my AN 27 months ago. And while it is not as bad now it is very irritating.... especially as the specialist doesn't really believe me as apparently I shouldn't be having any of these difficulties....

1) Initially I couldn't read properly... I could say the words on a page but it meant nothing.
2) Typing was a nightmare... and has improved dramatically... as has my reading.....
Like MikeC I was/am a professional geologist..... I had just finished my PhD when this all kicked off....

Pre surgery I had no problems.... and actually submitted my PhD 2 weeks before surgery.....
Post surgery.... great fun..... not only is my memory shot to pieces, in that I can remember some things and yet foget what I did 5 minutes ago... I'm not exaggerating.... but I have lost the sense of connection with my memories... it's like reading a history book.....
And apparently this shouldn't be happening.....
It's worse when I am stressed out or tired... and trying to function at times is really difficult....

This was on top of severe balance problems... couldn't walk unaided for 6 months after, still when I am tired ahve an ataxic gait..... and splitting headaches....

Well things are better.... I don't fall over so much, I can read basic stuff.... not good when you are just getting your career started but... I try to cover it up as much as possible.... More good days now than before.... but total exhaustion which is never a good thing.... and headaches which the doctor won't give me anything for..... I'd like to see him deal with these headaches.... but apparently I shouldn't be getting any of this...as I made a perfect recovery....  ie. no paralysis of the facial nerve....

Benefit of all this.... I got to see 30 and will get to see 40 and hopefully subsequent birthdays....

Love,
S

[bluestar]

To SorchaC,

I am having similar problems except no headaches. I am a psychologist and the covering up is horrible. I can set my own hours so I try to make sure that I am not tired when I see my clients. The only way I can manage this is that work comes ahead of everything else - otherwise I cannot work eitjher.

I have been doing crosswords and puzzles and that seems to have helped. I am also starting to exercise by going on a treadmill and this seems to delay the exhaustion.

I have found that I cannot have much of a social life as I cannot predict when I will be OK and I tire so easily when with a group of people - I find trying to hear is very exhausting. I often cancel at the last minute because I know I will not be able to cope if I am tired to start. People do not understand this and I hate seeming unreliable.

I am 59 - so at the end of my career - so I hope your youth helps you.

Please go to another doctor regarding your headaches. Your doctor denying this is unprofessional. Maybe see a doctor specialising in headaches?

Good luck to you.

If anyone has any other suggestions of how to cope please tell me!

Bluestar

[okiesandy]

I was diagnosed with AN on 4/20/05.  For a couple of months before I completely lost my hearing in my left ear I noticed some of the boneheaded blunders I made in my job. My assistant (age 24) has laughed about my stupid mistakes. I said it was probably O.L.D. disease. I'm 63.  In my mind I said I was just tired and stressed. In March I went on a cruise and came back more tired then before I went. I am having trouble spelling and remembering simple things like names of people and places. During my balance test I was ask to count by 3's I got to 30 and just lost it.  Couldn't remember what would come next. I am still in the discovery stage and had hoped this problem would resolve itself with surgery or gamma. I have talked to my ENT and says he thinks it is from my sudden hearing loss (overnight) and my balance problems and they will correct after time. At least now I know I am not alone in how this is effecting me. 

[Zach]

I've had trouble with not being able to stay on top of as many issues as before. Where before surgery I was able to keep track of things, now it's easier to have stuff slip away from me. It's like I can only think of 6 things at once. If number 7 shows up, one of the previous items has to leave to make room. Most perplexing.

I've noticed most of my problems with typing. I'm self taught, which I know isn't the best way to learn to type, but it's certainly worked well enough in the past. Before surgery, I was reasonably good, maybe 35-40 WPM, and not many errors. Now, my fingers seem to have a mind of their own. They wander around, with sometimes little to no response to input from me as to what I'd like them to do. Not only do I hit the key next door to the one I'm aiming at, I hit wildly inaccurate keys as well. Transposing, typing words completely backwards, adding letters, weird spacing, I've seen it all. Sometimes I think it's like there's a little time delay between brain and fingers, and the gremlins use that gap to get in. In fact as I write this, I'm laughing so hard I'm almost in hysterics. I'm trying so hard to get it right the first time and the harder I try the weirder it gets and the more errors I have to back up and fix. Can't seem to figure out how to get this genie back in the bottle! I try real hard not to let it bug me, as most of this stuff is a grossly exaggerated version of inaccurate typing in the "before" days. So far it's resulted in slower typing, but I refuse to give in, or to cheat by looking at my fingers as I type.

Hope I didn't put anyone to sleep,  this has only taken 5 minutes to write, and another 15 minutes to correct!

Zach

[bluestar]

Don't try too hard because you will tense up and this will result in more mistakes. Do your best and ...relax.

Goodluck Bluestar