Author Topic: Cognitive/Emotional issues during an AN journey  (Read 21592 times)

Nancy Drew

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Re: Cognitive/Emotional issues during an AN journey
« Reply #15 on: September 26, 2008, 12:07:50 pm »
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
12/05 AN diagnosed left ear 4.5mm
06/08 6mm
Gamma Knife 10/21/08
1 year MRI  6.8mm x 5.5mm
2 year MRI  5.9mm x 4.9mm
3 year MRI  6.5mm x 6.0mm 
Slight Hearing Loss Post GK

Swedish Gamma Knife Center
Englewood, CO
Dr. Robert Feehs

MAlegant

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Re: Cognitive/Emotional issues during an AN journey
« Reply #16 on: September 27, 2008, 05:25:35 am »

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.
3cmx4cm trigeminal neuroma, involved all the facial nerves, dx July 8, 2008, tx July 22, 2008, home on July 24, 2008. Amazing care at University Hospitals in Cleveland.

MAlegant

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Re: Cognitive/Emotional issues during an AN journey
« Reply #17 on: September 27, 2008, 09:53:49 am »
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
3cmx4cm trigeminal neuroma, involved all the facial nerves, dx July 8, 2008, tx July 22, 2008, home on July 24, 2008. Amazing care at University Hospitals in Cleveland.

yardtick

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Re: Cognitive/Emotional issues during an AN journey
« Reply #18 on: September 27, 2008, 12:58:26 pm »
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
Sept 8/06 Translab
Post surgical headaches, hemifacial spasms and a scar neuroma. 
Our we having fun YET!!! 
Watch & Wait for more fun & games

Kaybo

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Re: Cognitive/Emotional issues during an AN journey
« Reply #19 on: September 27, 2008, 04:09:15 pm »
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
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

leapyrtwins

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Re: Cognitive/Emotional issues during an AN journey
« Reply #20 on: September 27, 2008, 06:09:54 pm »
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   
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

MAlegant

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Re: Cognitive/Emotional issues during an AN journey
« Reply #21 on: September 27, 2008, 06:27:02 pm »
Hey Jan,
I take Klonopin to sleep and have for a few years.  It's rx only, I'm pretty sure.
Marci
3cmx4cm trigeminal neuroma, involved all the facial nerves, dx July 8, 2008, tx July 22, 2008, home on July 24, 2008. Amazing care at University Hospitals in Cleveland.

Soundy

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Re: Cognitive/Emotional issues during an AN journey
« Reply #22 on: September 29, 2008, 09:38:22 pm »
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
3mm AN discovered Aug 2004
Translab July 2 ,2007
3.2cm x 2.75cm x 3.3cm @ time of surgery

MamaGina

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Re: Cognitive/Emotional issues during an AN journey
« Reply #23 on: October 15, 2008, 01:00:32 pm »
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
L 3.0 cm AN resection via retrosigmoid approach 10/2000;
CSF leak repair w/mastoidectomy one week later. 
chronic headaches, vertigo, fatigue, facial paralysis, SSD, and more!

Soundy

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Re: Cognitive/Emotional issues during an AN journey
« Reply #24 on: October 15, 2008, 10:53:42 pm »
I have kissed mine  :o
3mm AN discovered Aug 2004
Translab July 2 ,2007
3.2cm x 2.75cm x 3.3cm @ time of surgery

Soundy

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Re: Cognitive/Emotional issues during an AN journey
« Reply #25 on: October 15, 2008, 11:22:10 pm »
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
3mm AN discovered Aug 2004
Translab July 2 ,2007
3.2cm x 2.75cm x 3.3cm @ time of surgery

roncrawford

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Re: Cognitive/Emotional issues during an AN journey
« Reply #26 on: October 16, 2008, 09:24:31 am »
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.

leapyrtwins

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Re: Cognitive/Emotional issues during an AN journey
« Reply #27 on: October 16, 2008, 10:17:36 am »
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
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

sgerrard

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Re: Cognitive/Emotional issues during an AN journey
« Reply #28 on: October 16, 2008, 09:09:22 pm »
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
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

MaryBKAriz

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Re: Cognitive/Emotional issues during an AN journey
« Reply #29 on: October 17, 2008, 04:43:26 pm »
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
Diagnosed March 24, 2008, 1.1cm, right side, "Goldie" - small but mighty!! :-(
Hearing, lottsa balance problems and a few facial twitches before CK
CK June 2, 2008, BNI in PHX, Drs Daspit/Kresl, side effects,steroids helped. Getting "sea legs".
Apr 2012 - Still glad I chose CK

 


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