Cognitive problems

[laurawinkleman]

Greg,

I did not have any symptoms pre-surgery so I can not address that issue, however, I lost full function in my balance nerve and having one functioning nerve is not great.  I have difficulty on any uneven surface, in the dark or semi-dark, on stairs, etc.  I have also suffered all the cognitive symptoms you spoke of as a result of the surgery.  I strongly suggest that if you have any other alternative, surgery is not the one!  If I had it to do over again I wouldn't do it.  They can now do wonders with lasers and radiation.  If you have all these symptoms now and the surgery results in even a portion of what I experience now, you could be really frusturated with your quality of life.  Look at all your options, my surgery was considered a "great success" even though I lost my balance, hearing and a great deal of my short term memory, plus now I battle depression because of the side-effects of the surgery.  Best of luck no matter what you choose!

Laura

[Static]

Laura,
How long has it been since your surgery?  You sound like I felt about 4-6 months after my surgery and I still have major problems with balance in the dark.  My hearing is totally gone on the AN side and the tinnutis is roaring!  All that does make for some changes in your life, but I am able to deal with it better now than I did then.  If I had to do it over again, even with the mess I did go through afterwards, and some problems that I still have, I would still want that thing out of my head!  Hang in there!

[RH]

I am currently just over 12 months post op (removal of 3cm AN on right side) and I am sat here almost weeping with delight that I am not alone with my symptoms of a 'fuzzy brain'. The feeling you get when there is a word on the tip of the tongue that you just can't get out - a kind of verbal constipation! At least I know that I am not going crazy or if I am there are a lot of fellow crazy sufferers out there! Thank you.

I have written a diary of my experiences over the past 12 months - feel free to check it out
www.geocities.com/an_diary2004

Thanks

RH

[Russ]

Hi Greg
   Should I be looking elsewhere for the follow up you mention?
   Re: Your very first post and Dr Rigamonti's hypothesizing, I have been confronted with the same situation and begged a Mayo Dr to do a VNS. He refused. Just what if you developed some sort of problem on the remaining/contralateral side??
   Dr R. SHOULD be well versed in The cognitive impairment caused by vestisbular loss.
   If he did FSR and it failed, I guess I'm wondering why someone would choose another irradiation procedure as the GK mentioned?
   Maybe I'm misunderstanding as this message thread has grown very long.
   Best wishes!!   -Russ

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.

[kristin]

Ha! I can't believe I haven't read these posts before! I thought my own cognitive problems were just me getting dumb! It's so nice to hear that I'm not the only one who has them!

The other day I packed my daughter's suitcase for a 5 day trip and all I packed were underwear, PJ's and 2 pairs of pants. My mom called me to tell me she's worried about my spaciness, and she's not sure I should go back to work. hmmm..I am also finding it difficult to read allowed, even to my 5 yr old. When in conversations,  I find myself stopping mid-sentence to think of really easy words that I have forgotten. It's getting annoying!

SO.....does this get better? I'd like to go back to school someday, but the way it is now, there's no way I'd be able to remember anything I've read.

Kristin

[Kim]

Ha Ha!  I'm reading all of this again, thinking "man: I did lots of this kind of stuff for years BEFORE I had tumor!!  My husband has always thought I was spacey!  Does this story make you feel better about the suitcase:  once when my twins were infants, I fed the same one all day before we figured out why the other one kept crying and wouldn't pee!!! 

Hey, lots of teenagers have crashed at our house with NO pants and NO pjs; they come with bags, they just have videos etc. in them!!

[russ]

Hi
  I see your post is dated Feb. 24 and am wondering if you had the nerve cut. I personally disagree with the good Dr. I am now 100% bilateral vestibular loss and truly, some function is better than no function; Especially if in the future something would come up with your other ear as NF-2 or Menieres Disease.
  Best wishes!!
  Russ

My current balance difficulties have caused some cognitive dysfunction. The most obvious symptom is dyslexic writing and I've received a number of striking anecdotes from people suddenly transposing letters with the onset of AN symptoms. 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.

I have not had treatment yet, but I have posted in this category because I wish feedback concerning the effect on cognitive dysfunction of whatever treatment method you used. My surgeon's best judgement EDIT Dr. Rigimonti's off hand opinion is that cutting the balance nerve gives me the best longterm outcome on balance and cognitive dysfunction. He thinks the brain will function better with no data from one side than it is now with corrupted data. This also will, of course, entail a short term worsening post-surgery.

So, what was your experience with cognitive dysfunction pre-treatment and over the years post-treatment?

Thanks,

Greg
3CM left side / watch & wait

[matti]

 I had a 3.5 centimeter AN removed in July of 1998 via the middle fossa approach. I noticed early on after surgery that I had trouble finding the right words. I would always end up saying "well, you know what I mean, right?' My husband was aware of it and would often help me finish sentences.  7 years later and I am still having trouble, but certainly not as bad, I work very hard at it. It is always on my list of questions at follow-up visits with my ENT, but he somehow does not think it is related. I do however! When I read, I often can't recall what I had just read and have to re-read. I also constantly make lists, so I won't forget what I need to do.

Matti

[Angela]

I feel so much better after reading these posts!  I couldn't figure out what was wrong with my brain... now I know.  My balance and hearing nerves were cut during surgery, 4 months ago.  I can walk... but I look odd and feel like I'm marching.

Often times, words don't form correctly in my thoughts, then they get confused coming out of my mouth.  For instance, if I'm thinking of 2 ways to say the same thing, like "I'll order the pork chop" and "The pork sounds good", it comes out "I'll good the pork."

Sometimes, I can't even find the right word.  Instead of it being "on the tip of my tongue", I don't even know what letter it starts with, or what it sounds like.  Meanwhile, I'm deep in thought and the conversation is stalled.

Pre-surgery, I had a knack for remembering, especially numbers.  I could recall license plates and phone numbers easily.  Now, I frequently forget what I was doing, or why I went to other room.  I remember a few days later and think OH YEAH.

My surgery was 14 hrs, so I was under ansthesia for a long time.  Is that the root cause?

[Mo]

hi,
I know this sounds awful, but I am SO glad I am not alone with my cognitive delays.  I am a special education teacher and kowing what is going on is not exactly "calming."  It actually made things worse.  I thought I was loosing it.  I have had to retrain my reading skills. math skills and social skills ( I just blurt things out- RUDE! so I dont forget what I wanted to say!)  It's been really hard on my husband and family.  At Christmas I couldn't even write out my cards with out help and now I am typing (thank GOD for spell check! LOL)!
It really set my mind at ease to know I am not alone in this  stage of recovery and that it will continue to get better as long as I don't push too hard. 
I had a 4.5 cm AN/ translab @ the HOUSE in LA. 9/28/04. With Dr. Luxford, Schwartz and some other Dr. S.   I was so out of it LOL  I just remember he wore a lot of cologne and he had grey "big" hair!
Thanks for being so honest about what is happening, now I don't feel alone anymore.
Mo

[gregpstone]

From the first 2005 issue of "Journal of Vestibular Research, "Does vestibular damage cause cognitive dysfunction in humans?" is available online at

http://www.jvr-web.org/Volume_15/Number_1/v15_n1_a1.html   

This is one of several recent papers I found abstracts of and the only one I have found on line.

The connection between Vestibular nerve damage and a range of cognitive dysfunctions is being documented.

[gregpstone]

To Russ and others, my apologies for failing to report back after treatment. I had cyberknife in April and the only change has been a chak chak chak sound added to my tinnitus. I didn't know that there was a cyberknife in St. Louis and went into the first consultation at St. Louis University Hospital thinking I was going to have GK.

The cyberknife is very cool - a giant robotic arm guided by an imaging system and a computer map of my head created the previous week that delivered a couple hundred shots of radiation over three days with accuracy of less than .5mm. (I didn't believe the accuracy either but Dr. Buholz insisted on it)

While the cyberknife has had no negative consequences I don't think it or any other treatment is capable of restoring my mental abilities back to what they once were. I'm a CPA who now can't do a reconciliation, gets hopelessly bogged down in complex tasks and even finds simple arithmetic a difficult test for my concentration. I'm going to do a vocational reassessment over the next year and try to figure out what knid of work I can still do well. I strongly feel that I'm just as intelligent and even more creative, (simple tasks become one man brainstorming sessions as associations swirl) so while I will soon be forced to say goodbye to a successful career over thirty years as a controller, MIS Director and CFO, I believe there is a bright future for me in some other field.

[Mo]

I had a very hard time with reading, writing and memory in general when I first came home from my translab 9/28/04.  I still have issues mistyping words (thank God for spell check!)  I stumbled and fell a few times but, I mostly run into things at night.  I have a hard time sleeping still, 9 months post op!

 The skills are still there, but I remember trying to read the orders on my door at the hospital and not being able to, only recognizing numbers.  I was completly freaking out.  I am a Kindergarten Teacher and all I could do was think,"How can I teach, itf I can't even read!"  Things are better now!  So hold to your hope, it just takes time!
Mo

[bjordanr]

I did not realize I had cognitive problems until my husband started mentioning it me.  I used to be an avid book reader and now I am lucky to get through a news article. I start sentences and forget what I was saying.  I go to say something and it comes out all jumbled up.  I used to be an ace at mathematics...now I cannot even play Yahtzee without a calculator. I can remember things I did many years ago very clearly but I will forget things that happened yesterday. I once tried to attend a seminar that was 4 hours...I only lasted about 1.5 hours.

No one has offered any help for these issue.  So - I try to read as much as I can tolerate.  I carry a calculator with me.  I keep a diary. I have to have a calendar or I will forget appointments, etc.  And now I can say I had a "brain fart" and its true - people understand.

[kristin]

i realized the other day that i've only read a few books since my surgery. i used to read at least a book a week, and now i'm not sure if it's the lack of a good book or the fact that i get bored or sidetracked after reading a page or two.