Cognitive problems

[gregpstone]

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

[Wendy]

I have experienced that switching of letters; it makes typing a challenge it was not previous to my surgery (retrosigmoid for 3.5 cm AN) but slowly, very slowly I am able to type more than before with less frustration. 
Wendy

[MikeC]

Hello Greg ...

I find your question interesting. Yes, the term "cognitive dysfunction" fits well. Pre-surgery it got to where I could be walking down the hall and suddenly turn to the left and walk right into the wall. Post-surgery, total loss of 7th & 8th nerves, I continued with quite poor balance, even simply falling over if I stood up, or turned too quickly. I found attempting to study a technical book, I was a Professional Engineer, was overwhelming, and for some reason a frightening undertaking ... lighter stuff was okay, as it matter not if I skipped a word, or missed a line. Yes I can relate to your description of "cognitive dysfunction" ... I like it.

Hmmmm does this get better with time ? Well I have good news, and I have bad news. Good news 1st ... I graually reduced the times I fall, I can drive at night and I do not skip as many words, or lines when reading ... but, I now find when I go upstairs, or into another room, there is a good chance when I arrive there, I will not recall exactly why I did so.

Life is a mystery and a joy, with so many options. Will the brain function better ? A very difficult question I think. Different ... yes, but better ? Who is to say ? I have found my brain to be absolutely amazing at learning, utilizing, formulating, developing alternate avenues, as my neurosurgeon said, "He is amazed at the functions that come back in some of his patients, after losing functions once thought to be a permanent loss."

Good luck in your journey, and know you can overcome any obstacle.

                             MikeC

[Becky]

Hi.  I, too, in the months before surgery had AN-related cognitive problems.  Short-term memory was affected and I had bouts of confusion.   I would forget people's names who I work with.

I was told by the neurosurgeon who removed my AN that he and ent surgeon thought my tumor was compressing an artery.  Once they got in there, the surgical report noted the area of the tumor to be highly vascular.  Since my AN was not compressing the brain stem, I believe the vessel involvement, along with the failing left vestibular system, were the sources of these cognitive problems.

Right after surgery I noticed a definate deficit in short-term memory, attention span/mental focus and problems getting side-tracked.  I would head down the hall to do something, see something along the way, get side-tracked, and totally forget what I had initially set out to do.  All of that while feeling the 24/7 'swimminess' that happens when your vestibular nerve is cut.  This cleared up within a few months. 

I still had occasional bouts of confusion, which were quite alarming.  One time I couldn't understand something I totally understand and had written to someone else about -- how one side of the brain controls the other side of the body.  After a day or so I understood what I totally understand, once again.  These scary bouts of confusion are gone (knock wood).  I still have short-term memory deficit, but mostly in remembering non-meaningful numbers, such as zip codes and phone numbers. 

Here is a link that talks more about cognitive issues as they relate to the vestibular system:
http://www.nemsn.org/Articles/cognitive.htm

Sincerely,
Becky

[lifeisgood]

Hi,
I haven't had any cognitive problems to speak of post surgery with the exception of forgeting where my keys are and leaving my purse at stores.  I actually am pregnant right now so I am blaming it on that.    (purse left only once)
I just wanted to share my positive experience with not being overly impacted by any cognitive issues just in case someone is reading this and thinks that this is a definite outcome of treatment.
I empathize with those who are dealing with these types of issues.
Take care!

[Pembo]

Prepsurgery I thought I was going crazy. I'd be in the middle of sentence and have no idea what to say next. I was tutoring kids and I felt as if I had no idea what I was trying to say. It was horrible.

Post surgery I had some mild confusion again but now at 9 months post op I rarely have any.

I took a tax class starting 3 months post op. It was very hard in the beginning but by the end of the 11 weeks I felt I was back to my old self.

[Becky]

I took a tax cla** starting 3 months post op. It was very hard in the beginning but by the end of the 11 weeks I felt I was back to my old self.

Barb, Thank you for sharing this.  I have been asked to consider taking a course at work.  This is something I should do, and want to do ...  Now, I just have to do it, at some point ... fairly soon.
Becky

[Shadow]

I haven't had my sugery yet ( waiting til fall to enjoy my last summer with good hearing).  But I have noticed a lot of the issues noted above.  My AN is 1.7cm and is causing Tinitus and ear fullness.  I had not noticed the balance issues until my Dr. asked my to think about it.  I'm 36 and work nights so I blamed the early morning stumble out of bed to fatigue.  Well it happens a lot more than I thought it did.  Now I hold walls going up stairs, unconcously at first but now I notice it.  Tinitus has been going on for two years or so and since then I've noticed mental confusion and lack of ability to concentrate.  I am an avid reader and used to be a pretty good typist, but I've already corrected this note about 8 times, for spelling mistakes and hitting wrong keys.  I find that it is a struggle to read numbers correctly at work (I'm on an assembly line) and the sheets coming down have to match the ones on the car.  I keep getting mixed up in my mind as to the order of the numbers.  For someone who measures high on the IQ scale I'm feeling pretty stupid lately.

GRRRRRRRR
'

[Becky]

Shadow,
you are not stupid, even tho you may feel that way sometimes because of the deficiency of your vesgibular system.  quite the contrary -- it takes a lot of mind-power to process thru the constant distraction of tinnitus, hearing loss and vestibular misfiring -- so your brain is actually working harder than normal to process the same environment.  I posted a link above that talks about the problems processing sequences regarding vestibular issues.  It's not your brain that is causing the problem, just the sensory input that is taxing your brain. 

One advantage, I've heard, with having the vestibular nerve severed in surgery for tumor removal, is that it prevents misfiring, which is very confusing to the brain.  With the nerve completely out of commission, the brain is forced to rely on the compensation of the other side (which does happen altho never back to the way it was).  I have heard that some people who did not have the nerve completely severed sometimes go back for toxic injections to kill it off to prevent the misfiring. 

Your tumor is small, and it seems you have all options available.  Good luck to you now and in the future !

becky

[ConcernedWife]

My husband had AN surgery July 2004. This is a man who was never sick before surgery. They found the tumor after doing testing for ringing in his ear and he realized he couldn't hear very well. Since surgery he has had awful headaches. He is also experiencing being dizzy. At this point he is at the breaking point. We are looking for any suggestions we can find. Thank you!

[Becky]

Concerned,
I don't think your husband being at the breaking point is a cognitive issue.  I have heard that there is a procedure to burn off offending nerves that cause severe headaches.  Your husband needs a solution to his physical dilemana, and then his frustrations will alleviate once these issues are addressed.  I've heard that physiotherapy can help alleviate headaches as well.  Cecile has posted here about her first hand experience with this, and she may be able to help you. 

Did your husband have the suboccipital/retrosigmoid method of surgery?  What potential solutions have been prescribed and tried?  It's always the waiting that is the most difficult.

Determination and hope are invaluable.  Don't give up!
Becky

[centimeter]

Hi
  Google Dr Kenneth Ericksons, "Cognitive aspects of vestibular disorders". It's long, but well worth the read in helping to understand cognitive challenges. Dr Erickson presented this speech at a 1998 VEDA conference

 C

[Crystal]

Hello,

I am almost a year post cyberknife treatment and I am also a software engineer.  I can't tell you the number of times in a meeting my brain froze for about 3 seconds trying to retreive something, and then it would just pop in place.  It was quite unsettling but at least I have an excuse.   

Things are much better now.  Tinnitus is almost totally gone, balance problems I rarely notice.  Vertigo is almost gone, although alot of vertical blinds in a meeting room bug me a little, not as bad as it use to.  The brain thing -- I have been taking ginko which to me is amazing.  My brain works so well when I take it and when I dont for a couple of days I go back to being stupid. 

I am so optimistic now I can go for days now and totally forget about this whole experiance.  MRI's show my tumor shrinking, and I can actually tell.  The fullness feeling in my ear is gone most of the time.  I have hearing loss in my ear but I do hear better than I did pre-treatment because the tinitus went away.

God bless everybody you can get thru this.  It will pass with time. 

[bluestar]

Dear Centimeter,

I would like to read Dr Ken's article but cannot get it up on my computer. Any suggestions?

Thanks for the information.

[gregpstone]

http://www.theblackriver.net/wobbler/wobblercognitive.html

Hopefully the link above will work. I agree with centimeter that Dr. Erickson's article is worth reading. I gave a copy to my doctor, Bennecke, and brought it up with Dr. Rigamonti at Johs Hopkins. Unfortunately, I haven't been successful in my attempts to contact Dr. Erickson and haven't found much else on this subject. Dr. Rigamonti was unfamiliar with the link between vestibular (vertigo) and cognitive (mental confusion) dysfunction. Dr. Bennecke, who I will see again Monday conjectured that the best long-term balance outcome (cutting the nerve) would probably correlate with the best long-term cognitive outcome.

While this conjecture is reasonable, since it hasn't been studied, I'd like to get more testimonies to how cognitive function changed before and after treatment, especially long-term post treatment.