Author Topic: crazy or what????  (Read 11213 times)

thecakes

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crazy or what????
« on: January 22, 2007, 08:35:59 am »
   My AN was removed Oct 20,2002.   The doc said he got all of it.  I also had a stroke, a few seizures, blood clots, coma for 6 weeks, etc.  All after this mess, now I'm fine except for
balance issues, and memory problems.  I am on disability.  I'v allways had memory problems which got worse around the "tumor days" but now is worse yet.  I ask my husband where he is going today{truck driver} he says 'YOU JUST ASKED ME THAT a minute ago.  I remember asking thAT but I forgot what he said.  I do things like this all the time.  I was with my mom and we met with some of her friends.  I was interduced 3 times.  Later that week I told her that if I would see them again I would'nt recognize tjhem . I  was stoped in a store the other day and it was one of the ladies I met, and sure enough i did'nt know them from adam, much less know their names.  How stuck up I must seem.  The red flag went up the other day when my kids were talking about xmass and what my oldest daughter got me.  I forgot.  They said she got me a DVD and I swore I had this DVD along time ago.  Now my oldest daughter lives in Dayton-95 miles away.  She is the first to leave the nest.  Whatever she does seems like big news to us, do you know what I mean?  That I could'nt remember what she got me for xmass is a big thing and its like I sware I am right weather the whole family says I'm not. OH, I am ok half of the time and I do a good job of mothering and house work, pay the bills, etc but I think theres something wrong yet.

ppearl214

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Re: crazy or what????
« Reply #1 on: January 22, 2007, 08:52:14 am »
Cakes,

You have been SO missed around here! :)  Great to see you! :)

Oh, you are certainly not alone. I "milk" my short-term memory dr's note all the time (especially when I forget a birthday or something really silly....).  You, my dear, have endured SO much during your AN journey and it's certainly been on heck of a roller coaster ride for you.

Let me reassure you that you are not crazy... and sometimes, it's difficult to try to educate those around us that memory issues seems to be a part of our AN journey.  That our balance or hearing loss or tinnitus is all part of this trip (that we didn't ask for).

Capt'n Deb did a fantastic post recently about how she deals with trying to get things done, especially with some of the memory issues. Let me see if I can find the link to it (as you can see, the web site has changed since you were last here).  She provides terrific insight into handling some issues, how she writes reminder notes and such and does other things to help her out. You may find it informative as well.

Hang in there... sending my usual huggles to you.....

Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

ppearl214

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Re: crazy or what????
« Reply #2 on: January 22, 2007, 08:54:10 am »
Cakes,

here is the link to the thread I noted above... it may be helpful.

xo
Phyl

http://anausa.org/forum/index.php?topic=2807.msg29882#msg29882
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Battyp

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Re: crazy or what????
« Reply #3 on: January 22, 2007, 11:29:26 am »
Cakes welcome back and you're not alone in the memory department!  Everyday since my son was little as soon as he'd come in from school I'd ask him how is day was and if he had homework.  I still do it and he's 16.  Unf. I'll ask him and 5 mins later ask him again and he'll gently point out I just asked and he answered.  Of course my standard reply is well honey humor me and tell me again and this time I'll try to remember what you said  LOL  It's frustrating and gets old for both of us but he knows it's just part of what I'm going through.  Now ask me what my phone number was when I was 16 and I can tell you that  LOL


nancyann

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Re: crazy or what????
« Reply #4 on: January 22, 2007, 12:56:19 pm »
Hi there Cakes:

Just wondering if it's time for an appt. with a neurologist ???   Could be something else going on ???  (hate to bring it up, but...  that's quite a memory problem,  I'd want a neurologist to make sure everything in the brain is okay).

Wishing you all the best, Nancy
2.2cm length x 1.7cm width x 1.3cm  depth
retrosigmoid 6/19/06
Gold weight 7/19/06, removed 3/07
lateral tarsel strip X3
T3 procedure 11/20/07
1.6 Gm platinum weight 7/10/08
lateral canthal sling 11/14/08
Jones tube insert right inner eye 2/27/09
2.4 Gm. Platinum chain 2017
right facial paralysis

matti

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Re: crazy or what????
« Reply #5 on: January 23, 2007, 12:09:04 am »
Hi Cakes, I've missed you!!!

My AN surgery was in 1998 and since then I do suffer from memory problems, but I have been experiencing an increase this past year. I am unfortunetly entering menopuase and along with that comes a new set of issues, including short term memory loss. Someday's I feel like I am losing my mind >:(.  I am not sure where you are regarding peri-menopause/menopause but your memory problems could be exacerbated by either one. Mix the AN memory issues with the menopause memory issues and it's a wonder I still know who I am.

take care and welcome back!

hugs,
Cheryl

3.5 cm  - left side  Single sided deafness 
Middle Fossa Approach - California Ear Institute at Stanford - July 1998
Dr. Joseph Roberson and Dr. Gary Steinberg
Life is great at 50

Patti UT

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Re: crazy or what????
« Reply #6 on: January 23, 2007, 03:46:43 am »
HI Cakes,
   I'm sorry your having to deal with all the, "am I going crazy or what" stuff. Your description and Batty's sounds like mine. It really does get old for the whole family. I do think Matti really makes a good point. Especially since it seems to be getting a little worse for you lately. The menopause thing really can play a big part, and like she said, compounded with the AN memory issues, now were really loosing it. Sometimes I feel like they removed half my brain while they were in there.  It is very frustrating, I know. But hang in there. Unfortunately, like Phyl said, a big pat of our post op journey is constantly educating, and re-educating those around us of our limitations.

Patti UT
2cm Rt side  middle fossa  at University of Utah 9/29/04.
rt side deafness, dry eye, no taste, balance & congintive issues, headaches galore
7/9/09 diganosed with recurrent AN. Translab Jan 13 2010  Happy New Year

thecakes

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Re: crazy or what????
« Reply #7 on: January 25, 2007, 07:24:37 am »
       HI AGAIN,I go to a  neurologist,and he had blood work done on me, {no results yet).  I take 400mg. of dilanton because of the stroke.  He said maybe thats to much.  Dilantion can make you forgetful if you are not taking the right dose.  I have not had any blood work done since 03.  He also suggested another MRI.  I'll wait until we find out more about the blood test.

thecakes

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Re: crazy or what????
« Reply #8 on: January 25, 2007, 07:30:18 am »
   OH, ITS ME AGAIN and yes, its menapause time too.  Back in the tumor days I was having trouble with my periods and then when I had that surgery it just kicked me in menapause.  Double the fun!

nancyann

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Re: crazy or what????
« Reply #9 on: January 25, 2007, 07:47:36 am »
Hey Cakes:

You're taking Dilantin & no bloodwork ???
Dilantin levels should be taken routinely - it prevents seizures, but if the Dilantin level
is too high or too low that too can bring on seizures.
Remind the docs you're taking this medication - a bloodlevel is in order.

Best wishes, Nancy
2.2cm length x 1.7cm width x 1.3cm  depth
retrosigmoid 6/19/06
Gold weight 7/19/06, removed 3/07
lateral tarsel strip X3
T3 procedure 11/20/07
1.6 Gm platinum weight 7/10/08
lateral canthal sling 11/14/08
Jones tube insert right inner eye 2/27/09
2.4 Gm. Platinum chain 2017
right facial paralysis

Obita

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Re: crazy or what????
« Reply #10 on: January 29, 2007, 11:40:53 am »
Cakes:

My father is taking Dilantin and he gets bloodwork done every 60 days.  If his level gets too high, he is a different person.  He is in a nursing home now but when I was living with him and his level got too high, he wouldn't even remember he had his alert button hanging on his neck.  He would fall and just lay there until I got home.  I would ask him why he didn't push the button and he would say:  "I forgot I had the darn thing....when did I get that?"

Now that he is watched, tested regularly and his Dilantin is adjusted if needed, he has not had any of the episodes in two years.

I hope you get your results soon. 

Kathy
Kathy - Age 54
2.5 cm translab May '04
University of Minnesota - Minneapolis
Dr. Sam Levine - Dr. Stephen Haines

thecakes

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Re: crazy or what????
« Reply #11 on: January 31, 2007, 06:30:16 am »
 ppearl214,     Thanks so much for the list of how to do things.  I found this very helpful, I ran a copy of this off.  Now if I can remember where I 'll put it!  Thanks again.  thecakes

Denise

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Re: crazy or what????
« Reply #12 on: January 31, 2007, 08:11:01 am »
Welcome back Cakes, nice to "read" you again.

I forget things too, age or AN who knows??  I hope your dr. can help you with the memory problem.   

denise
4+ cm, left side
translab 5/9/2005
CSF leak repair 6/23/2005
platinum weight in left eye 11/9/05
12/7 nerve switch 8/3/06
Univ. of MN Drs. Levine/Haines

ppearl214

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Re: crazy or what????
« Reply #13 on: January 31, 2007, 12:30:47 pm »
cakes, thanks to Captn Deb.... her list and it works for her.. and thrilled you found it helpful.  Look on your desk. I bet it's sitting there! ;)

Phyl

ppearl214,     Thanks so much for the list of how to do things.  I found this very helpful, I ran a copy of this off.  Now if I can remember where I 'll put it!  Thanks again.  thecakes
« Last Edit: January 31, 2007, 12:44:18 pm by ppearl214 »
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Jim Scott

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Re: crazy or what????
« Reply #14 on: February 02, 2007, 03:49:31 pm »
I think many AN patients experience some memory function problems.  I know that I have, but nothing serious enough to be concerned over, as yet.  I'm no doctor, but this sounds like a possible medication-related problem.
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.