ANA Discussion Forum
Post-Treatment => Cognitive/Emotional Issues => Topic started by: ppearl214 on September 24, 2008, 05:35:18 am
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Hi all,
tickled this forum showed up. We know that there is so much we endure emotionally and cognitively during this journey that we didn't sign up to ride..... have been many threads across the forums recently regarding cognitive (ie: memory issues, handwriting, etc)... as well as depression, mood swings, rants, etc.
Welcome to this new "home" to share these issues.... many docs (in my discussions with them) are beginning to recognize these issues post-treatment (and leading into treatments as well).... the ANA noted it as well in their recent "Notes" newsletter as well at last year's symposium (from what I hear). I'm tickled that this is now recognized as a major factor during this time for us.
Post on!
Phyl
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Yeah!!! Doctors who finally listened!! Mine aren't or don't, except my PCP and she is up to date on everything (thank God for Docs like her). Now id we could get family to listen or at the very least try to understand we might win the ball game.
Thanks, Phyl!
Brenda
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Great addition, Phyl! Cognitive issues have been one of the things that have affected me most post-surgery and it doesn't seem like anyone wants to acknowledge it. Here's a link that I came across on the subject. I don't know where I stumbled across it - it may have been on the Forum.
http://www.dinagoldin.com/anarchive/cognitive.htm
David
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well, me thinks this particular forum will be extremely active... glad the ANA approved it to be added.
David, I know of the link.... interesting/good reads.... for me, as well as learning patient perspectives about it, I'd like to see the dr's perspective on it. We know the ANA recognizes the issues and is addressing it (ie: synposium, "Notes", etc)...... but, how do we get the physician's to recognize it clearly? I know of write ups noting the depression, mood swings, many cognitive (ie: memory) and such.... I'd like to see more research, from an AN perspective (as most studies are all-inclusive to brain tumors overall, regardless if benign or malignant).
Just my 2 cents....
Looking forward to you all sharing here.
Phyl
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Cheri
I'll fill you in on my personal experience pre and post-op when I see you next week. They were two separate experiences.
You're almost there! And the weather will be great here for your arrival.
David
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Cheri
Don't worry. LAX is on the coast and they always get a coastal haze in the morning. Right now where I am, 4 miles from the House clinic, it's bright, sunny and about 80 degrees. When you're here next week it will be in the 70's. Very Fall-like for LA.
David
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I am definitely having the cognitive/emotional issues related to pre-GK. It was affirming to read the article regarding this subject in the recent AN newsletter. My problems right now: difficulty spelling, difficulty typing, hard time finding the right words, using the wrong words, can't concentrate, get mixed up, feel like I'm going crazy (this one is probably true!!!), get frustrated, overly dramatic, too sensitive about stupid stuff, get feelings hurt easily . . . . the list could go on!
May all experience some emotional wellness today.
Nancy ;D
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This is related to emotinal issues.........facial paralysis has affected my personality. I used to be really outgoing but I find it hard to talk to people when I can't even have an expressive face. It seems hard to communicate without facial expressions. I tend to withdraw from social situations and parties are out of the question. I would rather be at home safe and sound. Although I am looking better my facial muscles aren't strong enough for expressive movements. I don't know if that comes with time or if those are gone forever. A smile takes hard work. A blink takes hard work. Do the movements get easier and stronger with time. This has been really hard. I used to host tons of parties/events at my home and those have ceased.
Angie
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Wheres my post???? I know I had posted something here just a few minutes ago???? Oh my goodness, I've lost my mind....THE TUMOR ATE MY SHORT TERM MEMORY....LOL.
I remember posting something awhile back regarding handwriting. At least I think I did??? ::)
My handwriting has gotten soooo bad I dont even reconize it. Thats sad. As for my memory....I do miss it....
NOW WHERE WAS I?????
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Wheres my post???? I know I had posted something here just a few minutes ago???? Oh my goodness, I've lost my mind....THE TUMOR ATE MY SHORT TERM MEMORY....LOL.
I remember posting something awhile back regarding handwriting. At least I think I did??? ::)
My handwriting has gotten soooo bad I dont even reconize it. Thats sad. As for my memory....I do miss it....
NOW WHERE WAS I?????
HEY I FOUND MY POST......IT WAS UNDER A DIFFERENT THREAD....SILLY ME :D
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Angie, as we know facial paralysis stinks. But remember, even though it is hard work to smile and it is hard work to blink, a year ago it was impossible. Your muscles are not strong enough for expressive movement yet, but you do look better -- that's progress!
Hang in there. I do believe it will get both better and easier, just not as fast as you or I would like.
Sara
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Cheri,
I am definitely exhausted because of worrying about this AN all of the time, and I am sure it affects me cognitively and emotionally. Known fact that if you aren't getting good quality sleep it will affect your mood and mental capacity, etc. I also think (know) that the anxiety about my upcoming GK is causing cognitive and emotional issues. Yesterday I called someone three times with the same message (having forgotten that I had already left the message). Good thing she understands what I am going through. I am hoping and praying that everything will even out once I have GK. In the meantime . . . . day by day.
Nancy
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Hi Cheri,
I have had bipolar induced insomnia for over 15 years now. I take sleep medication every night, but they don't always help when I am wound up and obsessing about things like this AN. I am sure things will settle down once the GK is out of the way. In the meantime, I am just counting the days down. I have a good support system so that is indeed a plus. We are all troopers here!!!
Nancy
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I have been on an emotional rollor coaster since surgery mostly brought on by my formaer doctor's attitude that
the tumor was gone and I should be happy about that and get over it ...
I would if I could ...
I don't like having headaches daily or not knowing what I was about to do or say ... or saying
the wrong words ... like refridgerator... {put your books in the refridgerater (desk) , the cookies are in the
refridgerater (oven) , I rode the refridgerator to school (bus) } ... my post surgery minds just loves the word
refridgerater ... >:( ... it can mean virtually anything ...
I know I have been down alot and maybe even depressed at times ...I am hoping my new doctors , that I have yet to
meet , are more help and more understanding ... the continual pain day in and day out and the loud ringing in my now
deaf ear that I can no longer block out , wear on me ...
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Spooky thing about her drawing is she did it a couple months before the tumor was found ...she
said that that is how she saw me when I had a headache
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Soundy,
I like the picture also. Kids have so much insight. Sorry to hear that you had such an insensitive encounter with your doctor. Sometimes I think we forget that we are the "consumers", and sometimes doctors seem to forget that we are paying their mortgages. I hope you have a better experience with your new doctors. I have fired a few doctors along the way. One doctor told me I was fat, duh, and when I went back to see him a year later, he never did acknowledge that I had lost 70 pounds. Fired--new doc, and a great decision on my part. Don't forget that you have been through major brain surgery. You deserve the best.
Nancy
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The word problem is real. I am back to work (scary though it is) and yesterday I asked someone to "please check the map to make sure the dates work". Map=calendar. I am also doing other weird things without being aware until after that I've done them. I am laughing at myself but am also terrified. I have a lot of responsibility in my job and being sharp and on top of things is paramount. I'm trying to look at this as a long term healing process, but between my cognitive issues and my facial issues I am distracted much of the time. I will try to keep a positive attitude, exercise as much as possible, and more important, be grateful that I'm still here.
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Cheri,
Since my second week of work was definitely better than my first week, I am projecting that eventually everything will be fine. Try not to spend too much time worrying about this aspect. Concentrate your energies and positive attitude on the immediate road in front of you. (I'm jealous that you get to meet the west coast gang. ;D)
Best,
Marci
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Cheri,
I'm two years post op, and I am a watch and wait too, so from my experience I still have problems with cognitive issues. At times the emotional issues can get to me. One day at a time is all I can say, and we are all so different.
Wishing you nothing but the best! I'm like Marci, I jealous you are meeting the west coast gang. Make sure you post pictures of all of you together.
Anne Marie
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Cheri~
I base how tired I TRULY (I like to think that I am 100% OK all the time) am on how much trouble I have finding the right word or speaking correctly! I'd say that I am pretty far out from surgery, but as you have heard OVER & OVER - EVERYONE's different. It certainly does not affect my daily living or quality of life though - just makes it more humorous!! ;) There's nothing that I can do about it anyway! Don't even think about that right now. And yes, I have to fight the green eyed monster too on you getting to meet the West coast people!
K ;D
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Cheri -
most of my post op "issues" - including cognitive things - improved over time. But, like K said, when I'm tired all bets are off :P
Most of the time I like to fool myself and think I'm 100% back to "normal", but when I'm tired it's too hard to pretend. If I haven't had enough sleep or it's a stressful day I tend to walk "like a pirate", my balance is "off", my mouth and eye are dry, and I say "incorrect" words. I guess the moral of this story is try to get enough sleep.
Quick question for you. I just read your prior post on this thread where you say you are ADHD and that you take Klonopin to help you sleep. Is Klonopin an OTC med? or is it Rx only? I ask because my son has ADHD and I've never heard of Klonopin. He takes Melatonin at night which has made a vast improvement in his sleep, by sometimes he still needs help unwinding.
Jan
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Hey Jan,
I take Klonopin to sleep and have for a few years. It's rx only, I'm pretty sure.
Marci
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Like others , the more tired I am the worse my cognitive issues are ...by the end of some days I am not
speaking in real english...I lose things or mid stride forget where I am going or what I am doing
I was at school a good part of the day today working on Fall Festival stuff and came in and took a 3 hour nap...
thank goodness for crock pot or my family would eat my husbands spaghetti every night or starve as I would
sleep through making dinner
I still sleep in 2 to 3 hour bits and am up and down all night ...took Klonapin and something else that slips
memory right now ... Klonapin left me hung over feeling and other knocked me too far out and was over
sleeping ...also had more confusion than with spotty sleep ... I am sorta adjusting to sleeping when I have
to and doing laundry or house work at 2 in the morning ...
Need to find a source of employment that I can work around my sleep habits... or rather my endurance ... I have
done a some half days subbing and a full day (that almost did me in) ... I am not sure it is worth the money to go
put in a days work and come home and sleep through my two girls lives... we manage on what we make on farm
and my husbands public job and working for me is choice to do something other than sit at home doing house work ,
eating bonbons and watching soaps
disclaimer : ( I know that is not what stay at home moms do ...just a bad joke from a friend who's husband asked
her one day in front of a crowd if she just sat on her butt eating bon bons all day) and now we use it as we leave
school ... when one of us leaves or we meet in the store and part ways we say we are going home to our bon bons
I do still go to school and do volunteer work like sitting with a special needs child so the teacher assigned to them
can go eat or get a break , copy for teachers so they can teach , help with art projects etc etc... if I am
volunteering I can leave if need be ... I have to go ... it gets me out of the house and staying active ... if I sat here
all day I would vegetate and go nuts... what I get out of being useful in any capacity is worth a great deal...
I know I am not the same as before surgery and may never be ... but the memory of what I could do versus
what I can hold out to do now haunts me ... so I try to just take things a day at a time and if I get back to where
I can hold out and out in a full day without napping I will be glad of it ... but if I can only manage my free time given
that will be OK too... getting to a point of excepting that has taken a while and at one year anniversary made for a
hard week of grieving ... facing myself and telling Me that it was OK to not be 100% took a bit of doing ...but
I think for most part I now believe it ... I was not letting my self grieve for things lost and it held me back...
Now I am rambling but I guess that is par for the course
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This is a very useful subject. I have had many cognitive/emotional issues along my AN journey. They began with the diagnosis, surgery coping with the CSF leak, and then coping with being an entirely different person. I have ended up with anxiety, depression, ADHD, mood swings, fatigue, difficulty word finding, memory loss, anger, etc. I am on Paxil, Topomax, Relpax, and a stimulant for ADD for which I cannot remember the name. I have good days and bad days. I'm just glad I'm not going crazy and there are others who are feeling the same.
Gina
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I have kissed mine :o
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I may kiss it again...right after slapping husband around ...
I was reading parts of it to him and he says but that person said it was due to medicine they took...
being hardheaded I have to beat into him stuff... like the cause of a loss doesn't always matter when the
outcome and side effects are the same...
breaking leg from a bike wreck and because your wife beat you with a baseball bat are both gonna hurt and
both require the same cast
Thanks for posting this
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You mean I’m not a total waste? I can’t believe after struggling with these issues for almost four years I’m not alone with these post AN problems. I don’t have the words to explain my relief in reading your post and the article that Donna provided about the problems that are not just my own. As a man we are supposed to be able to get up shake off the pain and get back in the game. I’m a strong man and I’ve dealt with a lot of fiscal and mental stresses in my life but this one is getting the best of me. Besides the diminished mental and communication capacities does anyone else have the relentless loud white noise coming from affected side of my brain? Looking forward to sharing these problems with like-minded people that don’t disregard my experiences like my doctor has.
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ron c -
you are DEFINTELY not a total waste :o And you are definitely not alone.
Sounds like you need to consult with a different doctor - perhaps someone with compassion.
Maybe someone here could help you with that.
Jan
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Hi Ron,
Welcome to the forum. Sounds like it might be just the place for you. :)
The loud white noise you "hear" is called tinnitus, and is quite common. My version is a chorus of crickets. Fortunately they don't bother me most of the time. People have lots of ideas of how to calm it down, like not drinking coffee or getting lots of sleep. Not always possible, but worth a try.
Hope you find the forum useful, and glad to have you here.
Steve
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DonnaLynn,
I am so glad to have crossed paths with you! I was diagnosed in March and I think the link below that you posted has helped me more than any other information. THANK you so very, very much for posting it. It is so informative and felt it was written for me.
Thanks again and a BIG hug for you!
Mary 8)
http://www.hearinglosshelp.com/articles/balancesystem.htm
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Ron,
You are not alone in the white noise world! My tinnitus (ringing) is so loud, everything
around me sounds like listening to noise while in a cave. Unfortunately my job is listenning
and the more I listen and concentrate, the louder it gets. I am fortunate that me
neurosurgeon (Barrows in Phoenix, AZ) is sympathetic. Although there is nothing he can do about it,
it does make me feel better that he is sympathetic! I do feel for you as I know it is very annoying!
Pauline
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I thank you all for the kind words and encouragement. Now that I know this is a problem that many people go through how about we find a solution? Early on my doctor told me to limit my caffeine intake but that didn't help. If you have never had to deal with Severe Tinnitus you don't have a clue what it's all about. Everybody has had buzzing in the ears at one time or another in their life but when it's 24/7 balls to the wall noise it gets your attention.
Here is a link to a UK site that has an online test to see where your frequency level is. Maybe I always oversimplify things but rather than trying drugs to help did anyone think of sound balancing the problem? I know when I found my frequency which is 5800 hz it seams to mask or balance the noise and limit its harmful effects. If someone would want to check that out and let me know that'd be great.
http://www.audiorelief.co.uk/en/tinnitus_test.html
Later
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Hi Ron,
I haven't checked the link but my son (20) is a musician who suffers from tinnitus. Very common actually. He sets his computer at night to "white noise" at just the right frequency to cancel out his tinnitus. He has also used a loud fan and both seem to work.
Good luck,
Marci
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Hi Ron,
Interesting site! Mine mostly registers at 7000 HZ mostly but my ringing pitch changes and sometimes
has 2 pitches! If you find anything that helps, I would be grateful. I teach piano and have had to cut down as it seems the more I listen to students play, my tinnitus gets worse on occasion. Most upper
level students.
Pauline
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Hi Pauline,
I too often have more than one sound in my tinnitus. I know the distortion I hear in my bad ear makes it hard to figure out just what I am hearing. I can only imagine how difficult it is to teach upper level students. Hang in there. I am cheering you on!
Mary 8)
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My ears used to ring about equal...since surgery and no sound being able to mask the ringing AN side
due to SSD the An side is louder sounding ...which the doctor told me to expect... but I didn't really
expect it to be as loud as it is ... and as he said it isn't any louder but that side thinks it is since there
is no real noise going in... had one doof a** tell me that since it was not real noise it should have gone
away with surgery
I have had tinnitus since I was around 4 after a severe concussion ... there are times it gets on my nerves
to the point I am almost in tears ... after 43 years you would think I would be used to it
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Have I mentioned lack of attention span ...was gonna type one thing and got distracted by tinnitus
comments and forgot what I was saying :-\
This morning I was making ghouls for school carnivals haunted house ... we had gotten some plastic
adult sized skulls and I was suppose to be making hangy floaty ghost like bodies for them... I draped layers
of cheese clothe , some dyed gray and mossy green over a coat hanger and added some boney arms ...
Things were going well until I picked up my drill and began drilling into a skull to attach the skulls and
bodies together
I had some weird flashback experience and started shaking and gagging... I have been nauseated all day ...
had to finish the things but gagged all through the process...
At least it was 3 and no one was up when I was at my worst... I was still working when the kids and husband
got up but not so bad as to upset them....they worry when I have a set back or act stranger than
they think I should ...
It was so weird... I just thought to myself ...They drilled a hole in my head and freaked out ...I
know they did it ... no denial here ... but it just slammed into me and became very real...I know this is not really
making sense but hard to really describe the intense feelings that came over me
I figured this qualified as an emotional issue ...
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Hi Ron....I had CK almost 4 years ago. I had already lost about 90% of hearing in left ear........tinnitus was getting worse. Now I can't hear at all on that side. I cannot tolerate....loud venues....restaurants....theaters.....TV.....conversations etc. It gets confusing when two or more are talking......I can't understand what they are saying. I love music but to loud......can't play my piano because sound isn't compatable to my circumstances. I have other issues too. I was told by a friend that her ENT try 1/4th of 5mg valium to calm the nerve......it does help....as does a small glass of wine. Something tells me that the aggravation of the tinnitus makes everything worse.....this remedy at least makes it tolerable for me and I can sit in the these situations and be okay........perhaps not wonderful but okay. I cannot go sleep without some kind of background noise...........tv....ocean....rain etc. If I start to get agetated I change my surroundings.
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Thanks for responding to my post. I don't check the site very often because I can't get caught up in the problems we all struggle with every day. I have yet to find anyone who understands what we all suffer with daily and have given up hope on educating people near to me. I don't have the strength to fight the symptoms and the lack of understanding at the same time so I focus on trying to live day to day with it as long as I can. I'm hopeful someone stronger than me can yell loud and long enough to get the right person with the right mindset to help with these horrible symptoms. I know that someday it will happen and I hope we will all be able to feel whole again. My thoughts and prays are with all who suffer from the multitude of side effects from AN procedures and know that the symptoms will one day be conquered either with a medical breakthrough or death.