ANA Discussion Forum
Archive => Archives => Topic started by: gregpstone on February 24, 2005, 11:13:07 am
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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
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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.ÂÂ
Wendy
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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
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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.ÂÂ
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.ÂÂ
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
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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!
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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.
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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
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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 >:(
'
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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
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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!
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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.ÂÂ
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
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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
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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. :P
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.
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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.
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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.
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Thank you. The link worked beautifully and I was able to print it as well as saving it.
Thanks again.
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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
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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
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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.
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Thanks, Bluestar. Good luck to you also, on your journey.
Sincerely,
Becky
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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!
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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. ???
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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.
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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
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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.
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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
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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
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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.
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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
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Don't try too hard because you will tense up and this will result in more mistakes. Do your best and ...relax.
Goodluck Bluestar
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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
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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!
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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
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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.
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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
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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!!
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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
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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
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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?
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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.ÂÂ
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 :)
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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 ÂÂ
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.
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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.
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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
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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.
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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.
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I was thinking last night about what seems to be a lot of people with post-operative cognitive problems and wondering if there is anything we all have in common...such as:
- size and location of tumor (mine was about 1cm on the right side)
- surgical approach (mine was Retrosigmoid/Sub-occipital)
- length of surgery (mine was about 5 hours)
- anything unusual during the surgery (I started to hemmorage)
Just wondering.
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I had posted this same thought yesterday in another thread. My tumor was:
- left side
- 3.5cm
- Middle Fossa approach
- hearing nerve lost/facial nerve splayed
- 8 hours in surgery
- spent a long time trying to save the facial nerve
maybe there is a correlation somewhere???
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Thank you all for this post. I figured my probs were surgery related. I sometimes I can't find the right word or words come out jumbled. I also could memorize numbers easily and now I forget simple ones, even my phone no sometimes. It isn't all the time but enough that I notice it.
I'm looking for a pt job and I'm worried that I'm not up to it.
For the record
Tumor was 4 cm, right side
Sub-occipital
20 hour surgery
Tumor was on 5 cranial nerves only hearing/vestib removed
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I was thinking last night about what seems to be a lot of people with post-operative cognitive problems and wondering if there is anything we all have in common...such as:
- size and location of tumor (mine was about 1cm on the right side)
- surgical approach (mine was Retrosigmoid/Sub-occipital)
- length of surgery (mine was about 5 hours)
- anything unusual during the surgery (I started to hemmorage)
Just wondering.
The articles referred to show that balance diffciulty causes damage to the hippocampus. The hippocampus is associated with short-term memory and math ability. Surgery almost always causes more damage to the balance nerve and so there should be a high correlation between surgery patients and cognitive problems. As a "right brain" super rational CPA, these cognitive problems have gutted my cognitive strengths that have enabled me to have a successful career and make a lot of money. On the other hand, I can't say that the damage and cognitive problems are intrinsically bad. As an amateur musician, I think I have benefitted and my creative thinking in general is enhanced.
My theory is that the difference in reported cognitive difficulties has more to do with your pre-balance problem style of thinking. If you were never good at math, you wouldn't notice the huge drop in ability that those of us who excelled at math do. In general terms, those who think like accountants have a huge change, those who think like artists experience a much smaller change.
Greg
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Hi Greg!
Good post and thanks. I'd like to know more about the hippocampus and left/right brain abilities in relationship to vestibular challenge. If you know of any good links, will you send them my way at russvk@earthlink.net, or, post them here?
Have a nice day/eve!
Russ
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Hi Greg,
I would also be grateful if you would post some links here.
Thanks,
matti
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Russ & matti,
The links I posted on pages one and three of this thread are the best articles I have found. Here's an interesting one http://www.scuba-doc.com/LTE.htm on the cognitive problems of long-term scuba divers which is directly related to our situation. In the last few weeks I've been concentrating on the space program. Here's my e-mail to Dr. Chuck Oman at MIT ( http://www.nsbri.org/Research/Neuro.html )and his reply. They are generally now focussed on spatial thinking problems but the American astronaut now on the space station is doing more broadly based cognitive testing using a program that I will red flag with with a new thread when it is available.
Dr. Oman,
I wanted to call your attention to recent research linking compensated balance disorders resulting from vestibular damage to cognitive dysfunction and atrophy of the hippocampus. A summary of the research is here, http://64.233.179.104/search?q=cache:VdgsHxqeJaMJ:www.jvr-web.org/Volume_15/Number_1/Feature_15-1.pdf+%22does+vestibular+damage+cause+cognitive%22&hl=enÂÂ
The cognitive disorders that are often experienced by people with vestibular nerve damage, such as myself, are similar to some of the symptoms of "Chronic space motion": fatigue, space stupids, decreased vigilance and loss of motivation. Long-time scuba divers commonly have cognitive problems identical to many vestibular nerve damage patients. In the case of scuba divers it is thought that they experience direct vestibular nerve damage from underwater pressure, but this may be an unproven assumption. In the case of astronauts the possibility exists that even without direct vestibular nerve damage, the incoherent balance data could cause physical damage to the hippocampus. I have seen no evidence indicating how long after the vestibular nerve is affected resulting damage to the hippocampus occurs. Is there evidence of changes to cognitive function before and long after prolonged weightlessness? In vestibular patients that have cognitive problems, the problems persist even after balance is well compensated and episodes of vertigo are no longer experienced.
Whether the incidence of cognitive dysfunction concurrent with weightlessness is temporary, or past a certain point is permanent, I would appreciate hearing about any strategies for ameliorating the symptoms so that I can try them, if practicable, to see if they might benefit my struggles with the "Earth stupids". Stephen Kosslyn and Jennifer Shepard at Harvard plan on having a web based version of the MiniCog software they are using available in two weeks and I plan on using it to gauge the effectiveness of any therapies that I try.
Thank you for your kind attention to this e-mail.
ÂÂ
Greg Stone, CPA
Greg -
Many thanks for your thoughtful and insightful note.
I had seen the Smith et al review... The question of how vestibular signals drive hippocampal centers, particularly the direction and place cells that mediate our sense of direction and where we are, is the subject of much current research. Attached is a recent paper by Taube et al which has a review of the relevant background literature you might want to skim. It discusses what happens to head direction cells in weightlessness.
One important thing to keep in mind is that (at least based on what we know so far) astronauts don't experience pathological changes in their vestibular end organs or peripheral nerves the way vestibular patients such as yourself do. The vestibular organ nerve pattern going to the brain changes, but doesn't cease. It's true that some morphologic changes have been seen in rat cerebellum and other structures (e.g. Holstein, 1998 Neurolab experiments), but in all probability these just reflect normal adaptive response to the change in the information pattern, and are probably not "pathologic" in the sense that they are not reversible. As our experiments with rats in parabolic flight (Taube et al) imply, hippocampal directional sense changes in 0-G, but we believe this is just because our CNS navigation centers are primarily adapted to 2D terrestrial navigation on a locomotion surface, and so our direction sense is optimized for 2D. As a result astronauts living in 3D environments naturally find themselves suceptible to Visual Reorientation Illusions, a cousin to the "direction vertigo" in azimuth that we sometimes experience on Earth (e.g. in the subway). We don't fully understand what happens to hippocampal function in 0-G - there has been only one experiment, and the way things are going in the space program it may be many years till it is done again. But the Knieriem et al Neurolab study on place cell responses in Neurolab rats suggests that animals initially experience something akin to visual reorientation illusions in humans but are capable of developing a veridical 3D sense of place.
In your situation, if you are looking out for CNS/limbic changes as a result of your vestibular infarct, you'd want to look for subtle but Alzheimer's like changes in your sense of direction, and ability to automatically "dead reckon" when you walk around inside buildings. Do you think you can point back in the direction of the unseen front door of the building as well as you could earlier in life ? Tests of ability to mentally rotate objects in 2D or 3D may show correlated changes - one of these is in Steve K's battery as I recall. Researchers are beginning to recognize though that mental rotation and directional abilities - though related - are not quite the same. Some navigation researchers, such as Mary Hegarty at UCSB and Maria Kozhevnikov at Rutgers are working on tests of "perspective taking ability" that may tap more directly into the spatial navigation system.ÂÂ
A relationship between vestibular loss and incidence of anxiety and depression has been noted clinically. There are several recent reviews of what is known. Search for articles by Joe Furman of Pittsburgh, who is one of the clinical experts in this area.
Hope this is of some help.
Chuck Oman
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Interesting thread...
greg, I was tested some years ago for right brain and left brain thinking.... i scored equally on both.... so I figure that's why my cognitive probs since vestibular injury and now with an AN mean I notice a big time drop in cognitive function mathematically, spatially (artistically, verbally and for want of a better phrase, "seeing the whole picture " lol... but that last one is still better than the first two separately....
Be well.
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Hi I have read this long thread. Had my surgery last July 2005. Complications with spinal fluid leak. I was back at work in 6 weeks and driving in 8 weeks.
I lost hearing in the left ear as a result of the surgery. I have also notice that I am pretty much useless after 2 PM. It can take me 3 hours to write one letter when I used to be able to construct one in 20 minutes. Focus is touch. Delay responses, forgetting names.
I have found that it's best for me to write something that could be complicated and sleep on it before sending it out...
I am in consultive sales. It has brought new meaning to challenging. ;)
I would ask for any insights or solutions that other haved tried. I read where a another member is using "Gingko" sucessfully.
On the plus side, I have been able to make better decisions when I can focus on actions to move or resolve issues. In most cases, strategic planning is much clearer and more profound in my discussions with peirs and customers.
So - the glass is either half full or half empty and I am trying to fill it up. Your help is much appreciated.
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ML You amaze me! I couldn't have gone back to work at 6 weeks if my life depended on it. I know it had to be hard!
This had been an interesting thread...we need to keep it to the forefront for the newbies just expieriencing all this so they know they are not alone! I've been telling my mom I feel stupid due to being able to remember things and words getting jumbled. I know what my exceptioanl education students feel like!
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Wow, this is an interesting thread!
I've experinces cognitive problems as well- my math skills were never super, but now they are non-existent. I was tested by a shrink during a disability exam and she asked me a few simple math questions and I totally blanked.
I make my living as an artist, and my paintings are better than ever! I've sold more of my post-surgery art than ever. I've been taking old paintings from pre-surg and reworking them and putting them back in the gallery and they have been really moving. It takes me a lot longer to paint a picture now--I guess taking more time with them has improved the quality or something. Hmmmm......
Captain Deb
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Capt Deb did it ever occur to you that it's taking you longer to paint one cause you're posting while you paint? :-* :-* :-*
Funny thing is I'm sure I read this thread months ago but don't remember it :o(
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Hello,
I have had 2 surgeries on my right side AN and will at some time have surgery on my left (I have NF2). Since my surgeries, I frequently walk in to a room to get or do something, and can't remember what it was by the time I get there. I don't know whether the surgeries are to blame or not. One thing that I think has been very good for me has been going to graduate school. I taught middle school band for 16 years, but with my NF2 diagnosis came recommendations for learning a new profession (not much of a market for deaf band directors). So, I have studied library science for the past 3 years; and plan to graduate in August of this year. Learning a new set of vocabulary and so much new information has really helped to sharpen my mind. Don't get me wrong, it has been very difficult at times, but it really has helped. Just my thoughts.
Jeff
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Jeff what do you do with a library of science degree? Librarian?
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I didn't remember I posted on this thread. Quite frequently I come across a thread, scroll down and see I have already posted...I surprise myself.
I have also found that I am horrible with numbers now. When I am typing or talking I find that I always mix up my words, if I can find them..
BTW Capt. Deb - Your paintings are awesome. I envy your talents
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Hi battyprincess,
Yes, I am now our school's librarian, which I am really enjoying. Because communication will become difficult after I am deaf, I am also taking classes that would allow me to move into the field of cataloging, a more behind the scenes aspect of library science.
Jeff
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I'm needing a new job hmmm...that sounds like a possibility. I'm a reading teacher but am having difficulties with my speech and stamina so am not in the classroom this year. Libraries are quiet too.
Have you considered cochlear implants? I read if you have tinitus in both ears and are deaf they can do cochlear implants. I was freaking out about a month ago as I was told I was losing hearing in my right ear. Lost the hearing in my left from the nerve damage in my AN side. They were discussing options with me and that was the only option that would work. Just wondering if it might be an option for you.
Do you work at your school as the librarian?
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Yes I am the school's librarian now. My library is sometimes quiet, but I spend a lot of time teaching research skills and technology skills. So it isn't always quiet, but quite a change from teaching band. Very few people with NF2 are able to use the cochlear implant. It requires an intact auditory nerve and cochlea, and I don't think that doctors attempt to save the hearing nerve in many cases, certainly when the translab approach is used. I know 2 people with NF2 who had them and had to have them removed later, and one man who still uses a cochlear implant. I did get an Auditory Brainstem Implant at House during my last surgery, but I am among the unfortunate 8-10% who are unable to use it. You can read about it here http://www.hei.org/news/facts/abifact.htm I m hoping to get the next generation Pentrating ABI when I have my other tumor removed (now 3.5 cm but perfect hearing). It is fascinating technology. This link has some really cool images of and information about the device: http://www.hei.org/news/presskits/pabikit.html
Have good one,
Jeff
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A thought for a second career for a teacher....As a retired teacher myself, I know there is a high demand for help in the learning disabled, the hearing impaired area, and deaf student area. Would one be able to fit in here with small groups and one on one classes?
It makes me so sad to read that good teachers have to leave their jobs. Surely, there are grants for retraining. A teacher is a teacher for life!
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Hi Boppie,
You make a great point. I am working to become proficient in American Sign Language so that I can communicate with my family, but that will also allow me to work withina school for the deaf, ideally as a librarian, since I am now a librarian. However, my ultimate goal is to learn to lipread well enough to stay right where I am. One of my biggest fears is becoming deaf and no longer being able to perform the duties of my job because communication is too difficult. I am doing everything that I can to keep that from happening.
What grade level/subject did you teach Boppie?
Jeff
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I am a special ed ( here we call them exceptional education) teacher. Due to my speech, fatigue and mobility there is no way I could handle being in a classroom 5 days a week and I'm a single parent so full time employment is a must.
I've applied at vocational rehab to see if they can send me for some training for something but have yet to hear from them. I've been told that if I'm not back to work in august ready to go then I'm gone.
Jamie they have to make modifications in order for you to keep your job be providing you with a signing interpreter. Vocational Rehab can/will help with that service. I'd contact them and get the ball rolling just in case..they will also pay for any classes you need to take in order to keep your job.
Maybe in a few months things will be different but not sure. I'm 7 mos post op I keep hoping I'm going to wake up one morning and feel my face and my speech problem will be gone! I've given up on my sanity returning!
Thanks for sharing Jamie! :)
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Jeff,
I took my B.S. in Education 7-12 degree in Ohio. I taught English Composition, grammar and spelling in New Jersey. Then I moved to Texas and taught middle school grades 5 and 6 in the private Episcopal School system. I have also taught Religion. I have certification in that too. I am retired from the classroom, but teach machine quilting to adults.
Teachers can fit into so many places and with little retraining. I like to use the term 'Educator" for teachers. It is a profession with great dignity. Teachers can write, publish, research, facilitate, organize, lead. We are positive and capable people. Salaries are catching up in some places, too! That is wonderful.
More tips for teachers: learn about Grant Writing, text book survey services, and copy editing for magazines and book publishing, teaching adults ESL and GED in a University Continuing Ed. System.
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Thanks for the insight Lois!
I went to vocational rehab for help and was told I was disabled ...DUH>>.handicapped people work I just can't figure out here (in Fl) where :(
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I have cognitive problems too. I lock myself out of the house. Lock the car keys in the car. Can't remember dates, etc. My Dr. Just gave me some Aricept to try. This is an alzheimers med. I hope it works. Anybody else on this?