ANA Discussion Forum
Post-Treatment => Cognitive/Emotional Issues => Topic started by: Twindy on January 30, 2012, 02:02:29 pm
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Hi,
I just spoke with someone who had the surgery two years ago and reported he has short term memory problems. He also said that after the surgery he had some judgement issues, as in not using good judgement. Also, things like when backing out with a car instead of looking then backing out, he would back out then look. Or he said some basic things weren't coming to him (stop at red, go on green). Those things are fine now, but he still has short term memory issues.
Is this typical?
By the way, I'm never quite sure which board to post my questions, feel free to tell me if it should be somewhere else. And I'm not sure if there is something I should do to get it maked as "new."
Thanks in advance, I have to admit, I was feeling a bit better about all this but am now not sure again.
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Twindy ~
Please don'r allow every negative comment you hear or read to govern your attitude regarding AN surgery. I had an almost trouble-free post-op experience but that certainly doesn't mean you'll have the exact experience. Neither does the fact that a AN surgery patient who complains of poor judgement or related problems make it a guarantee that this will be exactly what will happen to you, post-op. I'm sure you know that but it seems as if you are so stressed by your AN situation that you are easily rattled and ready to despair over things that are not even likely to happen. I hate to see that.
We have to be realistic here and not pretend that you may not have post-op problems, perhaps a few difficult ones, but on the other hand, you may not. I realize the insecurity of not knowing what may happen is stressful, because we all went through it. I just feel bad that when any negative possibilities are brought up, you immediately think the worst and seek reassurances that are simply not ours to give. How I wish we could!
We do understand your very natural anxiety over what will happen to you, post-op and that you're seeking reassurances. We can only be honest and remind you that the majority of AN patients do fine, post-op and even when problems occur, they are usually temporary and can be fixed. Yes, cognitive processes can be affected post-op but often they improve. However, as always, your experience may vary. That is the harsh reality. I wish it were not so but I would be remiss in not stating the truth. I just hope you can find the inner strength to surmount your misgivings and face AN surgery with more confidence and a positive attitude, which is always beneficial to healing.
I can assure you of one thing: you'll be in my prayers and those of others, I'm certain.
Jim
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Jim,
I'm not asking for unrealistic reassurances, but only for real experiences. I'm afraid my dr. has not given me all the harsh info regarding this and while he hasn't said it would be a cakewalk, he certainly didn't share some of the issues I've learned about since. When I hear someone is not able to remember what to do at a red light, I wonder if this is one of those things that happens to a handful of patients, or if this is a typical result. Hearing loss is typical, but not a "for sure." Of course memory loss is not a "for sure" but is it typical or simply one man's story?
I didn't realize my anxiety is so transparent. I'm trying to remain positive. I feel like I can take on and fight headaches, balance, even depression pretty well, but it is the thought of losing one's self and the ability to think clearly and take care of my family that frighten me the most about brain surgery.
Thank you for your response and prayers.
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Twindy
I can totally understand your anxiety level right now. Its ok to come here and ask questions and have anxiety attacks ;D We are all here to listen and try answer questions and share experiences. Like Jim said one persons experience does not mean that is the outcome as you know we are all different. My memory used to be really good. It seems like the AN has caused memory laps (or old age) lol. I blame everything on the AN. Thats my excuse....hee hee.
Mindy
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Jim,
I'm not asking for unrealistic reassurances, but only for real experiences.
Hi Twindy
I have to agree with what Jim has shared.... as we do try to share experiences... and knowledge, to the best of our abilities, here on the forums. What I can share is this... the ANA and many AN treating professionals are just now listening that AN'ers, for reasons unknown, are on occassion (and I state that VERY loosely!) starting to note these things. Even discussed as recent as last summer's ANA symposium in Cinicinnati (I was in attendance). It's not necessarily "judgement" or memory issues but some have raised issues of "focusing on something ie: reading, etc" seems off... or our handwriting may be a bit off, etc. Again, no one can pinpoint how these issues can relate to any form of AN treatments, regardless if surgery or radiation.
Many dr's are not recognizing these issues and it seems recent that AN patients are starting to raise these issues to our teams (surgery and radio) and stand up and have them recognize that these issues could (but as Jim notes... not always) occur. Reasons unknown... don't always happen... just now starting to become to the forefront... and I wish I had answers. My handwriting seems a bit off since my radiation.
Our AN are VIII cranial nerve.... hearing/balance..... yet, sometimes (but not always), these things may occur. Go figure. No answer. I wish I knew.
Phyl
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Well here is my two bits worth.
I had problems talking, typing, reading, concentrating, short term memory loss, and tiredness...
That happenned BEFORE treatment.
Talking with my support group, many AN'ers appear to have some similar problems.
There is actually some very well documented medical reasons, as to why we experience these issues..
But somehow the association of AN's with these symptoms seems to be missing...
So this is it everyone.....
OUR BALANCE NERVE or organ IS DAMAGED or REMOVED.
It doesn't matter if you have Surgery, Radiation or are in Watch and Wait, there is a very good chance that your balance is compromised.
So that means we nearly all have a Vestibular Disorder.
This goes a long way to explaining the problems so many of us experience
Some really good reading
http://www.vestibular.org/vestibular-disorders.php
http://vestibular.org/support-groups/cognitive-disturbances.php
http://vestibular.org/images/pdf/Observations%20on%20Cognitive%20and%20Psychological%20Aspects%20of%20Vestibular%20Disorders_VEDApubC3.pdf
http://vestibular.org/images/pdf/Vestibular%20Disorders%20Overview_VEDApubM2.pdf
Hopefully the recognition that these problems are caused by a compromised vestibular system will lead to further research and better management and treatment of AN's
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Paul .....
While I appreciate you providing the links to the VEDA materials, I hope AN patients do not feel that it is a given that we will have cognitive and/or psychological problems as a result of our ANs.
I have had three skull-based surgeries (see signature below) and although I had many of the symptoms/issues listed in these articles in the very short-term, most are a non-issue at this point in my life. Because of huge radiation doses as a teenager and my AN, I have NO vestibular function on either side (documented by tests). I awoke from my first AN surgery with MAJOR balance issues ..... needed a walker for the first week, double vision, memory problems, etc. ..... but most things disappeared within a very few weeks.
Those articles sounded like ALL acoustic neuroma patients should expect to have problems in cognitive or psychological areas. I disagree ..... at least in my situation. Yes, I still have some difficulty walking and discussing something at the same time, unless I am hanging on to something or someone ..... that is a given because I simply have to concentrate all of my visual and muscular energies on staying upright. Yes, I still need to take breaks during long physical tasks ..... it takes more energy for me now. So, yes, the possibility for cognitive/psychological issues exists ..... depending upon one's personality and/or daily work needs, but I do not feel it is automatic, by any means.
Yes, I did have a period of being really down after my first AN surgery, when it seemed I had plateaued (Is that really a word? :D) in my physical progress. I went to a trained vestibular therapist for months and I firmly feel that he was single-handedly responsible for teaching me the skills I needed ..... to be where I am today. I have learned to stay as close to something as solid as possible when walking ..... and to keep my vision firmly fixed on non-moving objects when walking. Driving is not a problem because I am not trying to walk and drive at the same time.
Cognitively ..... I do have some holes in my memory from the past four years, but I really have chalked that up to wanting to forget some of it and my age ..... the important things are still there. I am a retired teacher and church organist, but I still volunteer in many activities with no problem, other than working around the walking issues (no walking at night outdoors by me). I am a Sudoku, Words with Friends, and crossword puzzle addict so those brain functions are intact. ;)
Just please do not make assumptions about this. Encourage yourself to do as much as you can to keep yourself healthy!
Clarice
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Very well put Clarice! I am a Wheel of Fortune nut so don't call me at 6:30. I have been super the last 2 eves with guessing puzzles early but don't seem to be given the money for it! Drat! I do word roundup puzzle online and in a puzzle book. I do forget a word more than I wish but the age is starting now too plus the 4 AN surgeries. I have non AN friends who do also. Retaining detailed new info to explain esp about medical issues is harder now. I was emotional for a time after all of my surgeries and it improved over time as the recovery. It is easy to feel you are going to be tired and not yourself yet forever. Some people do have some long term cognitive and psychological issues but most that I have met personally over the last 10 yrs do not. We all have different personalities and I feel that plays a part of some of it also.
I do know that after my first AN that I could have pretty well forgot it had ever happened except for the SSD till NF2 reared its head and did change my life in some ways. We all vary in how this how AN affects us. Ones tumor size and location and the damage it may have done plays a part of it all also. Cheryl R
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Wow, I think these articles are a bit extreme. I had translab surgery four years ago and do not feel that I've experienced any of these memory / judgement issues. I think I can honestly say that, except for my immediate family, no one else even remembers I had AN surgery. And the main reason my husband remembers is because I occasionally have to ask him to repeat himself. That being said, I don't like to be in really noisy venues (loud restaurants, big parties, etc.) ... but I figure that's life and I just get over it.
Catherine (JerseyGirl 2)
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Jim,
I'm not asking for unrealistic reassurances, but only for real experiences. I'm afraid my dr. has not given me all the harsh info regarding this and while he hasn't said it would be a cakewalk, he certainly didn't share some of the issues I've learned about since. When I hear someone is not able to remember what to do at a red light, I wonder if this is one of those things that happens to a handful of patients, or if this is a typical result. Hearing loss is typical, but not a "for sure." Of course memory loss is not a "for sure" but is it typical or simply one man's story?
Cognitive deficits are not unknown with post-op AN patients but this condition is not usually a big problem. I had no loss of any cognitive functions and my AN was 4.5 cm. I underwent both surgery and radiation...and I was 63 at the time.
I didn't realize my anxiety is so transparent. I'm trying to remain positive. I feel like I can take on and fight headaches, balance, even depression pretty well, but it is the thought of losing one's self and the ability to think clearly and take care of my family that frighten me the most about brain surgery.
While your anxiety may be obvious, it is also very natural and something most AN patients facing surgery experience. I was optimistic prior to my surgery but also concerned about the 'what if's'. When I finally realized I couldn't really control the 'what if's' I decided to trust (a) God and (b) my very experienced, compassionate neurosurgeon. It paid off....I did fine.
Let me hasten to add that I certainly don't mean to scold you in any way. Your fears and desire for information are quite valid. However, it's what you decide to do with that information that troubled me. I'm concerned that you're absorbing all the negative possibilities that could be a result of AN surgery and as these accumulate, they are eroding your confidence and with it, your ability to remain positive in the face of the unknown, a daunting task for all of us, I assure you.
Thank you for your response and prayers
You're welcome - and you can be sure that we'll continue to try and help you as well as pray for you. It's the least we can do for another AN patient facing surgery and all of it's 'unknowns'.
Jim
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Hi Everyone,
Wow didn't expect that sort of reaction...
First of all I think we need to put some of this stuff into context.
The information is ALL of the symptoms that Vestibular problems CAN cause.
It does not mean that because you have a compromised vestibular system that you will have ALL or ANY these problems.
Many people will report NONE of these symptoms, and many do compensate for their vestibular problem over time.
However if you have an AN, or have been treated for an AN and have any of these issues, its probably your balance that is causing it.
Not the radiation, or damage to your brain.
The reason surgeons cut the vestibular nerve during AN surgery is to avoid these problems.
There is a lot of talk about long healing times on this board. I think that there needs to be some recognition that the long healing times may not be related to damage to the brain, or the effects of radiation, but maybe due to the time it takes for our bodies to adjust to a compromised vestibular system.
I see a lot of opportunity in this area.
Does vestibular therapy help with concentration, lethargy, memory issues?
Does the practice of cutting the balance nerve in surgery, improve Quality of Life, and speed up recovery?
Should we be attempting balance nerve preservation?
Does radiosurgery cause longer healing times because the vestibular nerve remains intact?
Should people that have Radiosurgery have a Gentomicin shot to destroy their balance aparatus?
Will people in W&W who have a Gentomicin Shot feel better?
I think it is important that we recognise the issues that the balance system can cause and how that relates to AN and what we can do as a community to improve outcomes.
It was not meant to scare people, I apologise if it did.
I was trying to raise awareness that if you do have issues, it can often be traced back to the vestibular system.
If we know that, then we can do something about it.
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I ran across the following many years ago. It is an exerpt from the book, The Joy of Being Human by Eugene Kennedy:
"Research on the attitude of surgical patients is instructive about anxiety. Some people deny all concern and seem almost unflappable up until the moment of surgery; they are not going to worry no matter what happens and they make little inquiry into their own condition. A second group tends to worry about everything in an excessive manner, driving relatives and the hospital staff to distraction in the process. Their worry mechanism is set at high, an adjustment that is as dangerous as no worry at all. A third group, however, experiences moderate concern and seeks a reasonable amount of information about what is going to happen and what they can expect in he way of discomfort after the surgery.
"The first group turn out to have a difficult time after their operations actually take place. Not having worried and not having anticipated the difficulties of recovery, they are frequently quite upset and tend to get mad at the doctors and the staff for not warning them about what they were getting into. The extreme worriers are not much better off because they are so flooded with worry that they cannot use the preoperation period intelligently as a time to prepare themselves for the experience. The patients who experience moderate worry and who have some idea of what will happen to them come out of the situation in the best shape. They require only half as much in the way of sedation and have, in other words, accomplished the work of worrying in advance of their operations; it has proved functional in preparing them for what they were getting into -- and they get out of it better than the other groups of patients."
Translation: Damned if you do, and damned if you don't.
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Seamar .....
So true. So true. I agree wholeheartedly on the descriptions of the three groups.
Clarice
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Saw my doctor yesterday. The resident told me that if I didn't have the questions or level of anxiety I was having she would be concerned that I was not ready to have this surgery. I have moments here and there on the higher end of anxiousness, but again, I was only diagnosed a week ago and signed up for surgery 4 hours later, not having ever even heard of this before. I want to know as much about recovery as possible--from folks who can really tell me--so I can arrange my life. In so doing, I've had a few panic moments, although I didn't realize they were showing through here. I hope to ease into the third group, going into surgery bravely. By the way, I feel much after talking to my highly confident surgeon yesterday. Full steam ahead. :)
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I had problems talking, typing, reading, concentrating, short term memory loss, and tiredness...
I have had these problems for the last 8 1/2 years since my surgery. Immediately after the surgery they were all very pronounced, but have improved somewhat with time. However, there is no question I am different post op. When having a conversation I will simply lose the next work I want to say. I can visualize the word but can't verbalize it. Typing is problem, I have to read emails 4 or 5 times to find the errors, normally, I am missing a word or I typed a totally different word than what belongs in the sentence and the memory loss of course. It is terrible frustrating and make life difficult at times.
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Regarding recovery and memory loss from an AN I think alot has to do with age, physical endurance, if one is retired or if one is employed and the type of job will have some impact on overall recovery. In my situation I had three brain surgeries in 2006 as well as mennigitis recovered very well, no headaches and take no medication, went back to work full time in 2.5 months (very demanding job) and back exercising after 3 months. I have permanent facial paralysis and had double vision (that was corrected in 2007).
However, memory loss and the ability to focus was not not something I noticed immediatly. I had my AN removed in 2006 but I noticed a few years later that I have trouble reading for long periods of time, my handwriting which was bad before my sugery is so bad now I can't even read it so I try to limit any handwriting and type everything. Also, when my family talks about movies and situations I find I have no idea what they are talking about. I have basically forgotten many things but I don't realize it unless someone brings something up. I get together with my close childhood friends every other month for bithrday celebrations and of course we talk about the past and I find there are some situations which are greek to me but the flipside I can remember other things in detail. I do believe that my AN has had an impact on my memory and it helps when I don't want to talk about something I just say "I can't recall that it was before my AN" : )
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Does type of surgery seem to be correlated with memory loss? In mid fossa (that's what my dr. preferred method) they move the brain aside and from what I understand, plays a role in the short-term memory loss issues. There was one method described to me in which they don't touch the brain, thus memory loss is not an issue, but no chance of preserving hearing. What have you all found in your research and personal experiences?
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Twindy ~
I underwent Retrosigmoid Approach AN surgery and yes, my neurosurgeon informed me that he did move my cerebellum "just a tiny bit". (his words). I suffered no noticeable memory loss or other cognitive problems. Of course, this is anecdotal evidence - but it is factual.
Jim
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Does type of surgery seem to be correlated with memory loss? In mid fossa (that's what my dr. preferred method) they move the brain aside and from what I understand, plays a role in the short-term memory loss issues. There was one method described to me in which they don't touch the brain, thus memory loss is not an issue, but no chance of preserving hearing. What have you all found in your research and personal experiences?
Hi Twindy I haven't been on this site as much trying to get back into it to see all the new posts...I had the retrosigmoid approach and yes I feel that I have problems with memory and cognitive skills since the surgery and the doctors are not confirming that...At first I thought it might be from the numerous medications I am taking and now slowly taking myself off of them to see if I get better..It is not that bad but has affected me with working but now if this is where I am going to continue to be I just have to try harder to concentrate and learn to be the new me.. It is great that you are doing a lot of research like you I was told I had an AN and not long after had surgery I did not do my research until afterwards so get all the facts before and just remember not everyone is the same and if these things do happen you have to just retrain yourself and it can be done...Make a conscious effort when driving or writing you just have double check where before it was natural and that is okay you have to keep yourself physically and mentally active...The key is too make sure you have a great team of doctors and that is half the battle and remember we all survive from this and will be here for you ..
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I have not had any treatment so far, in W&W, but I wonder if the anesthesia has any thing to do with memory loss after any surgery. I have several friends, one just last week, that had major surgery that have suffered some serious memory problems. Just a thought.
Karen
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I haven't had surgery yet but did have CK and I have to say that I have memory issues.
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Like I said, I've had no treatments but I have memory issues. Was just at Macy's and when the clerk asked what I wanted I went brain dead. Very embarrassing but got through it. I did refrain from saying oh, it must be my brain tumor. I would suspect in my case it's age, 65, since the tumor is confined to the IAC and no where near the brain. :-\
Karen