ANA Discussion Forum
Post-Treatment => Post-Treatment => Topic started by: kippy6 on October 03, 2007, 10:38:39 pm
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Has anyone's memory or ability to say what you are thinking been affected by surgery? I used to be a deep thinker, but it seems I have a hard time conveying what I'm thinking or remembering what I read at times. I'll never forget being in my hospital room after being released from ICU. My mind was thinking all of these things, but I could only say a word here or there. I can remember my husband and parents asking why I wasn't talking. I remember just not being able to talk, and wondering why I couldn't say the things I was thinking. Glad that lasted just a few days!! It improved by the time I was discharged, but I still had a little problem with it while recovering in Seton Hall.
Two months after my surgery I was taking a class, which lasted until May (9 months). By August, I couldn't even remember the name of the book we studied (not even part of the name). Other things too, which I won't mention here.
Right now I'm taking a class at church. We are all reading the same book, and we meet to discuss the book. The group questions are given to us ahead of time. I have trouble answering the questions unless I look through the book for the answer. I didn't used to be this way. If I don't have written down answers in class, then I usually don't say much of anything in class. It's like I'm pretty dependent on what I have written down, and I have trouble thinking of the long-winded answer on the spot. Even after reading 20 pages of the book each week at home, it's like I have trouble recalling what I read, and I have to flip through the book during class just so I can look at some of my underlined phrases to trigger something I thought was important. This week I was reminded of being in that state of knowing(in the hospital), but not being able to spit it out.
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I will not presume to compare our age differences because I am always aware of diffferences between me and my children's genration but...
I experienced word and speaking lapses for several months post op. Most notably I havd trouble focusing. I suspected all along that the lapses came from the trauma and my hysteria over the AN. On the outside I am a brick, inside I am "bumblefounded".
Today I had another anesthetic (Versad + Penergan) for a 20 minute colonoscopy. When I awoke my husband could see me babbling and saying long sentences of syllables. He couldn't make out one word of it. When I arrived home, an hour later I was still word doubfounded. Tonight at six hours past the test I was trying to converse over dinner and couldn't make out names of people and events recent. I think the fear of being asleep and having doctors "fix" me, once again put my word processor on vacation...hopefully a brief one. I can type, but I am not speaking well. As an old English teacher I find this frustrating but manageable.
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I had a bit of the same problem, except people didn't notice, I don't talk much anyway! But, mixing up words and so on s still something that can happen, even now. Rarely, but it can happen.
as for the memory thing, yes, I know what you mean on that too. I couldn't read a book for a very long time after treatment, just couldn't concentrate for long enough. I was stuck on page 36 for a couple of months, before I gave up. Grdually the concentration came back. It's still on the blink at times, depending on how tired I am, but in general it's ok. I think this thing and the treatment and recovery messes with our brains a lot and only time will heal it and bring it all back, mostly. Certainly worked for me. Luckily, I still don't talk much, I just type much better than I did a couple of years ago. Less going back and correcting.
Ciao
Lorenzo
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Yes - sad but true
Basically the forward, or short term memory
is changed and reduced (not the deep history memory)
It has something to do with the revised balance
the new balance is working harder taking more "space"
in the recent memory
Generally the more expert the new balance becomes
- the better the thought process becomes
so exercise will improve this
(when you first learned to walk - you were 4 (???)
it didnt much matter then...now you have a job or drive etc
and need fast thinking
even so - at work I just write alot more down than before
Best Regards
Tony
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Hi there Kippy6,
My goodness, yes I do have problems. I am a bit upset that my doctor did not warn me about this prioir to surg., not that it would have made any differance at all, I just feel like this part just sneaked up on me. Spelling is so hard for me now. I just don't read much yet. Surg.was aug.17,07...Patience , that seems to be the word I hear the most now days.
I was doing great the first couple of weeks after my surg. then started a downward slide. Six trips to the ER and no answers. Discouraged but not giving up. My theraspists tell me I am actually doing quite well but this patience thing comes into play again...I just don't have it!
I guess our brains just need time to heal and that time may be different for each of us. It's not a race, it's just people doing the best they can to get back what we lost when our tumors were removed. I am so glad that tumor is gone but impatient for the "old me" to be back. Sometimes that impatience can be good for us, it pushes us, makes us work harder, and that helps us reach our goals.
My prayers and best wishes for continued progress are with you.
Claudia
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This seems to be a somewhat common issue. I have no trouble reading or spelling, but I have trouble expressing thoughts through speech and writing. When typing, my fingers don't always coordinate themselves with my mind. I often skip words or use a word that doesn't make sense in a sentence. When talking, even though I know what I want to say, it doesn't always come out right. Sometimes I just use the wrong word for the topic at hand (for example, if I'm looking at a car and someone asks me what time it is, I might say "I don't know, I don't have a car" instead of "I don't know, I don't have a watch"). Other times, I respond totally off topic (for example, someone asks me what time it is, and I say "You know, I'm really tired today"). It's kind of like my mind gets off track.
I'm hoping this will get better with time, but it seems like the more post-op I become, the bigger the problem is. I don't remember having this issue in the first few weeks after surgery, but lately it's really starting to annoy me.
Does anyone know if it normally gets better with time?
Jan
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I had trouble finding words prior to surgery. Sometimes I would just stop talking mid sentence. I also would come up with the wrong word. I knew something was wrong but ignored it. I improved since surgery. It is the one thing that actually got better. My speech is faster and I don't have trouble finding the right word since surgery. Don't ask me to remember a number. For some reason, I have trouble with numbers. The brain is so strange!
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Numbers? I used to have a phone book in my brain. Thank goodness that has been zapped along with the AN. I now have to use an actual phone book to look up the numbers I need to remember. Great, less junk in limited brain space.
Using wrong words? Oh yes, all the time. 'Nice weather!' 'Yes, looks really cold' He? I was thinking of my cold feet for some reason, in sweltering heat. or, 'where did you put the keys / bag / grocery list / etc' It could be replied by any number of things like 'it's 11.00' or 'sure, later' or 'where?' Makes for a more interesting life I think. Never a dull moment!
Typing: well, it has improved actually. Even my hand writing has improved. I was making fun of the word transposing effect, but it too is getting better for me. Not doing it as much. I'm loosing a fond party trick!
Hello, Lorenzo
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Makes for a more interesting life I think. Never a dull moment!
Lorenzo -
what a great way to look at it! I just tend to see it as a nuisance, but as you say, it does make life more interesting.
Jan
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Lorenzo,
I still have a telephone phone book in my brain. I can remember account numbers from a bank I worked at 10 yrs ago. I remember peoples names just like that. I cannot remember a grocery list any more if my life depended on it or appointments. I have to write all of that down now. I was thinking maybe it was just that 40's something, thing happening ;D
Anne Marie
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Oh yes, forgot about the shopping lists and the zillion post its all over the place. Now I wonder how I forgot to mention those... It must be the 40 something thing. getting older, ya, that's it, getting older. I'm sure of it. I just recently got a bigger diary, for all the extra stuff i need to write into it. the idea being i can get rid of the yellow confetti here. of course, I forget to write stuff into it...
no way out is there; darn.
Ciao, Lorenzo :)
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Hi. I brought memory issues up in my guppy post. It seems to be a common problem. Here is a link to some info. that was posted a while ago. It is interesting on vestibular nerve issues and memory. I found it helpful.
http://www.backgroundfacts.com/menieres/COGDIS.htm
Bets Wishes.
Mary
2cm AN, Middle Fossa, HEI, Dr. Brackmann, 05-24-05
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Thanks for the link - I'll check it out too.
I'd like to find out what part of the brain is responsible for Short term memory, and what part is responsible for speaking what you are thinking. The latter almost sounds like a processing problem...I don't know. For some reason, I thought memory was in the frontal lobes of the brain, but I could be way off.
I have a friend who was in a car accident, and he still has PTSD now years later. He suffered some brain damage that was not tested/realized until almost a year later. Even though he appears normal and talks normal, it's like this --- Normal people connect the dots from A-B-C-D-E; but he is connecting the dots in the wrong order He is connecting them A-B-D-C-E, or A-C-B-E. Sometimes it is worse than others.
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I have problems like these as well. I too was a human phone book and now have been known to blank on my own phone number. I don't like being put on the spot that seems to be when my mind goes blank. I don't think most people understand what it is like to completely not have ANY ideas.
Lots of notes, lists and post-it's here too........
kippy I noticed in your sig that you have 4 kids, I have 3 and that doesn't help the brain either. :)
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I have 4 sons also. They get ticked when I go down the list. My dad use to do that to me. I was the youngest of 5, with a 22 yrs between oldest and me, the baby. My dad did not have AN. I still think its a 40's something thing!!
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I turned 40 not too long ago. I got my hair colored last week, and when I got home, I was thinking of all the steps she goes through to color my hair, and I couldn't remember if she washed my hair. This has been bothering me for a week now. I want to call her up and ask her if she washed my hair. But there is NO WAY I'm calling her. How embarrasing! She dried my hair w/a dryer, but I don't remember her actually washing it. It's lilke I skipped that part of the day...was I asleep or something? I don't remember being in the chair in front of the sink, and I don't remember laying back having her put my head in the sink. This has always been pretty uncomfortable for my neck, so I can't believe I can't remember this. Strange. I just draw a complete blank when I try to remember it. I'm wondering if this is an example of Alzheimer's?? I just want to know if I can correct it at all. It is frustrating.
When I was first told that I was losing my hearing, I was put on steroids, b/c apparently, if you find out soon enough, and start treatment right away, the steroids can reverse the damage (of course that was before they knew I had a brain tumor). I'm just wondering if there is something I should be doing now to prevent my memory from getting worse...
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I'm glad to hear that I'm not going crazy. I have the same problem. I'm 29 years old & have a 1.4 cm AN on my right side. I have an appt. coming up with the Cyberknife Center near me. I have trouble remembering things. I really have to think about it to remember sometimes. Also when I speak the words dont come out right. Strange!!!
Thanks for all the comments it really helps.
Mindy
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Hi YOU! I made it ;D
This is still such a disturbing thing to me. I hate not being able to think of a really simple word to express what I am trying to say especially when I am trying to discipline the kids! uggggggg As I look back on the last few years I used to totally lose concentration in the middle of meetings with clients and feel like a total idiot not making any sense...... Gosh I hope this gets better as the tumor continues to die.
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YEAH YOU MADE IT!!!!!
Isnt this website great!!!!
Hey question did you have your 6month MRI????
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I'm almost three years post and I'm a "dee dee dee"! I too have the same troubles as everyone here. It's not all the time as before, so makes it difficult for hubby to relax and "trust" what's coming out of my mouth.
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I totally understand.....CANT YOU HEAR THE WORDS THAT ARE COMING OUT OF MY MOUTH?????....YEAH BUT I DONT UNDERSTAND THEM SOMETIMES....LOL!
argggggggggg.....IT CAN BE SO FRUSTRATING. I'm thinking of one thing but something totally different comes out...like jiberish.....well us AN'er understand right?
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My 6month is scheduled for Jan..... I did the 2month in July and then 6mos from July. I was told it showed such a good response it could wait til then.... :)
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Well, I'm pre-treatment and have problems with this as well. The other day I couldn't remember how to get to my dentist. I've been going to the same one for over twelve years and really know how where I'm going, but for some reason, I got extremely confused and took at least three different routes to get there. I was so frantic and confused because THIS IS A SIMPLE THING! I'm glad I finally made it and even on time for the most part. I'll be talking about a football game and refer to a touchdown as a homerun . . . sorta thing. This had only been this bad for the last 3 months-sure hope it gets better after my surgery. Sorry to know I'm not alone with this but grateful to hear that it can improve over time. Please keep us posted.
~Firewalker
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My wife Susan had her surgery 04/19/06. and has alot of the same problems. She went threw alot of speach theropy to help her learn to stay on subject. Unfortunatly she ahad a stroke in surgery so its hard to tell what is from the an and whats from the stroke.
We just try to work together to retrain the brain. they say we only use about 10% so we figure we need to get the other 90% working. It has improved over time. We started buy having her repeate 3 words that i said after waiting 10 seconds and slowly added words and time. Though she has no gate keeper now and she always tells you what she is thinking( you just have to get used to the truth) her immediate memory processing and intermediate memory have improved dramatically. If you keep the right attitude about the situation and accept that this is the way it is. Its not to hard to deal with. My wife worries that she may say the wrong thing or talk to long and upset our friends. I told her that if they our truly our friend they will understand that is just how your wired now and if the don't then we will just get some new friends. Bottom line its alot of work but you can train the brain to to what it used to do. Just give it time to heal and get to training it.
Dan
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I too had a stoke .. we just have the re-learn everything! (maybe I will do it better this time 8) )
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Thanks for your post about memory, which generated a lot of interesting comment.
I wonder, has anyone with memory problems had a PET scan? This would indicate which parts of the brain are being affected.
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I had a stroke too among other complications. And I have found that my short-term memory isn't what it used to be. I can remember things from before my surgery but have some difficulties remembering newer things. I have, however, come a long way. At one point, I could neither tell my wife the name of our president nor tell her who d*** Cheney is. I have found that I need to use my Blackberry to keep track of the things that I need to do. I also make many more lists than I used to, So, I muddle along and slowly - very painfully slowly, get better.
Best wishes to all,
Jeff
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All I can say is "Hooray for Post-it Notes!!". ;D
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Ok I am going to throw a monkey wrench in here.
I am curious as to how many posties who responded here… so here goes
“Who here actually does not get 7 hours of consecutive sleep through the night?�
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I haven't had 7 consecutive hours in over 5 years. Unless you count my 9 hour surgery. Slept like a baby then.
I'd say I'm lucky to get 2-3 hours in a row without waking up. No wonder I'm tired. :P
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hello ,
Sleep.... what is that... haha. Seriouly my sleep patterns aren't what they used to be. I usually run out of gas at 11 pm, fall asleep by 11:30 wake up at 3:00 stare at the ceiling for an hour, get up do one or two loads of laundry watch a little TV. not much on at 4am go back up at 6am and lay down for 1 to 2 hours maybe catching a few more zzz. Sometimes I lay down for a cat nap during the day but I feel guilty because I not doing more during the day. In short 4 to 5 hours is usually as much sleep as I get on a regular basis.
Sue
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This is interesting...
I am curious as to what the others have to say...
4
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4, You shouldn't throw heavy metal objects, especially when the balanced challenged could trip over it! ;)
Lately I've been waking at 3 am (about 5 hours total sleep) then am able to fitfully fall back to sleep for another three only to wake with head ache that goes away upon rising. The only time I sleep 7 hours is out of exhaustion then the cycle returns. Not sure if it's AN tx related as my hubby, six years older than me, has these moments too.