Author Topic: Stanima Low Still After More Than 15 Years.  (Read 8412 times)

Kathleen_Mc

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Stanima Low Still After More Than 15 Years.
« on: April 01, 2006, 05:59:33 pm »
Just wonderng if there is anyone else around who is "long" past surgery and still has difficulty with stanima?
I am over 15 years post op from my orginal surgery and still I am very tired. I almost always wake up tired, I get naps whenever I can, I often all asleep on the couch before my son (who's 7) and I feel like I'm dragging myself everywhere.
Kathleen
1st AN surgery @ age 23, 16 hours
Loss of 7-10th nerves
mulitple "plastic" repairs to compensate for effects of 7th nerve loss
tumor regrowth, monitored for a few years then surgically removed @ age 38 (of my choice, not medically necessary yet)

Rc Moser

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Re: Stanima Low Still After More Than 15 Years.
« Reply #1 on: April 01, 2006, 07:04:50 pm »
I can relate, I feel like crap most the time and fight headache's three to four times a week. :'( IMO it drags you down where you just don't feel like doing anything,  :(luckily I can still make it to work most days, but by the time I get off I'm wore out, feel like crap, and my head usually hurts. :(  I find that the short drive home makes it worse. My ear starts buzzing, I get alittle dizzy from the movement and by the time I get home I almost got motion sickness. I sure hope you don't feel this way. Please give me some HOPE! But, I do think I'm getting better, my episodes don't last as long and I do have some good days. :)
9/17/03, 4.5CM, Translab, OU Medical Center, Dr. (the ear man) Saunders and Dr. B. (the BrainMAN) Wilson  along with about 4 other Doctors that keep me going for 18 hours.

matti

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Re: Stanima Low Still After More Than 15 Years.
« Reply #2 on: April 01, 2006, 07:36:32 pm »
I am 8 years post-op and have not regained the stamina that I had pre-op. I find myself feeling very overwhelmed at the things I need to get done because of the lack of energy. I find that I need to pace myself during the day, so that I am not so tired in the evening. My doctors keep telling me that it is because I am getting older and also related to hormonal issues. Not sure I totally agree.

The good thing is that I never have problems falling asleep at night. ;D
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

Boppie

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Re: Stanima Low Still After More Than 15 Years.
« Reply #3 on: April 01, 2006, 10:43:00 pm »
I doubt anybody can tell you how much energy or staying power you should have in any given time because there are so many other factors.  I think one could compare themselves with a sibling, older or younger, and perhaps get some benchmark to go by.  But, in reference to aging...there is some amount of change in stamina over each advancing decade of life.  Having reached 64 I can say I had lots more stamina at 55 than I had pre-op.  I'd believe age 44-50 is the so called time of zest.  Then as menopause approaches (usually 52 or there about) the whole body shifts gears.  Men experience a similar shift, might have trouble sleeping, put on extra body weight, loose muscle mass.    I mean this might sound silly but as we get older we do slow down. 

As for feeling draggy, I'd say a blood workup, check thyroid, etcetera might give you an answer.  You might find out you are right on schedule and healthier than most people in your age group.   :D

The mistake we make as we age is comparing ourselves to young people.  We are bombarded every day with comparisons.
« Last Edit: April 01, 2006, 10:56:04 pm by Boppie »

Boppie

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Re: Stanima Low Still After More Than 15 Years.
« Reply #4 on: April 01, 2006, 10:51:34 pm »
RC,  I have sound induced tinnitus since my surgery.  I get a zzzttt after every sound I hear, after my own voice, and after these keys click on this keyboard.  On days when the humidity is high, it is worse.  I keep on keeping on, like you.  I am just too stubborn to pay attention to it.  I will find something more pleasurable to listen to.  When I drive, the road noise is very bad, so I play the radio low, this helps me.  I turn the TV low and listen.  Little by little I am adjusting, but it isn't easy is it?  We could all get jobs as endurance coaches. :)

Rc Moser

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Re: Stanima Low Still After More Than 15 Years.
« Reply #5 on: April 02, 2006, 02:51:19 pm »
Boppie, Noise is really hard on me also. I cringe when ice drops from the ice machine. Silverware clacking drives me up the wall. Any high pitched noise makes me cringe. I have to have the TV so low my wife can verly hear it. I know I get on her nerves sometimes, but she understands having to set in the waiting room for 18 hours and taking me to who knows how many appointments. Life is definately different, but good! You probably know my motto: A day without a headache is a GREAT day! ;)
9/17/03, 4.5CM, Translab, OU Medical Center, Dr. (the ear man) Saunders and Dr. B. (the BrainMAN) Wilson  along with about 4 other Doctors that keep me going for 18 hours.

Captain Deb

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Re: Stanima Low Still After More Than 15 Years.
« Reply #6 on: April 02, 2006, 03:02:22 pm »
Since my surgery in 03, which felt like waking up 30 to 40 years older, my stamina has decreased in inverse proportion to my anxiety level.  Just leaving the house is a chore, especially for trips, Drs. appointments, etc. I work at home, and even though, I am able to work almost full-time again, I dread any kind of driving around chores (bank, grocery, etc.) I joined a gym to try to get myself out of the house more--didn't even go last week!

When I had my daily excruciating headaches, at least I had an excuse not to get out of bed!  Now I feel bad about myself when I feel like blowing everything off because my anxiety about it is overwhelming. I'm tired of kicking my own a** when I just DO NOT have the energy to get done what needs to get done. 

Woo! I needed that!  Thanks for listening (reading)

Capt Deb 8)
"You only have two choices, having fun or freaking out"-Jimmy Buffett
50-ish with a 1x.7x.8cm.AN
Mid-fossa HEI, Jan 03 Friedman & Hitselberger
Chronic post-op headaches
Captain & Designated Driver of the PBW

Battyp

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Re: Stanima Low Still After More Than 15 Years.
« Reply #7 on: April 02, 2006, 04:41:28 pm »
Deb I find my anxiety level climbing with leaving the house.  I've been avoiding grocery shopping for two days now.  I know how hard it is and how anxious I get while in the store.  I'm not able to work full time and figure when it comes to crunch time all my energy will be work and I'll not have much quality of life for anything else.  I can't tell is I'm depressed and that's why I'm sleeping so much or if I'm exhausted.  UGH! :-\

Captain Deb

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Re: Stanima Low Still After More Than 15 Years.
« Reply #8 on: April 02, 2006, 05:03:37 pm »
Believe me, Batty, you really are exhausted.  I think depression, anxiety and physical exhaustion all go hand-in hand with each other and feed off each other.  The core of it is the vestibular deficiency after surgery.  It takes a lot of physical energy to retrain your "other" systems--visual and skeletal-muscular.  Mine usually comes to a head in the form of a thumping mifraine --my body's way of telling me to "HEY!!! take the day OFF!!!!"  It does get better, though, but it's a bloody battle.  And it really doesn't improve by sitting around, either.  Getting up and getting out is hard WORK!!! No one understands this like someone who has been in your shoes, believe me!!!

Capt Deb
"You only have two choices, having fun or freaking out"-Jimmy Buffett
50-ish with a 1x.7x.8cm.AN
Mid-fossa HEI, Jan 03 Friedman & Hitselberger
Chronic post-op headaches
Captain & Designated Driver of the PBW

Battyp

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Re: Stanima Low Still After More Than 15 Years.
« Reply #9 on: April 02, 2006, 07:48:38 pm »
I finally managed to go to the car wash and get some groceries and had a major anxiety attack.  I hate going out in public.  Some scarey dude came up behind me at the car wash and for a minute I freaked out as I realized I couldn't defend myself if I needed to.  Luckily I realized I wasn't out there alone and he was only looking to vaccum his car.  When he drove in all the windows were down and it didn't look dirty for a wash.  Mind games..they suck! 

matti

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Re: Stanima Low Still After More Than 15 Years.
« Reply #10 on: April 02, 2006, 08:09:01 pm »
My anxiety level sky rockets when I leave the house. Not sure when the balance issues will surface, driving causes such sensory overload and then dealing with SSD. When I get back home, I am mentally/physically exhausted at trying to keep all these issues in check . Alot less anxious when I am with someone.

I suffer from panic/anxiety attacks. I had them 20+ years ago and worked through it and did not have any until last November. Working through them yet again.

Sorry what happened to you today BattyP. Take care!

matti





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

Battyp

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Re: Stanima Low Still After More Than 15 Years.
« Reply #11 on: April 02, 2006, 08:45:11 pm »
Thanks Matti.

I've had anxitey attacks before surgery and was hoping they would go away but I guess that was a hope and a dream.  I'm still trying to get my heartbeat under control.  Darn didn't find those guys so had to wash my car myself  >:(

Larry

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Re: Stanima Low Still After More Than 15 Years.
« Reply #12 on: April 02, 2006, 11:16:43 pm »
Gee guys,

I had no idea that you have been affected this way. My concentration span has diminished and yeah, come to think of it, I do more of "can't be bothered" than I used to. Can't say that I have had panick attacks - gee that must be really hard to deal with. Can meds help? My wife had a breakdown some years ago and was put on a cocktail of drugs which she has now brought down to not a lot and is able to cope better with daily stresses, the kids and me.

I guess the AN and subsequent issues and side effects of the op creates a lowering of self confidence as well.

Anyway, relaxation does help but also confronting the issue helps - but you have to be ready for that. Confronting the issue like, doing the groceries but being aware of your surroundings especially at the beginning of recovery.

Laz
2.0cm AN removed Nov 2002.
Dr Chang St Vincents, Sydney
Australia. Regrowth discovered
Nov 2005. Watch and wait until 2010 when I had radiotherapy. 20% shrinkage and no change since - You beauty
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http://www.frappr.com/laz

DeniseSmith

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Re: Stanima Low Still After More Than 15 Years.
« Reply #13 on: April 03, 2006, 11:14:42 am »
Sorry to hear about your anxiety attack.  i hope you all get them under control soon.


I have some advice about shopping at the grocery store.  In the beginning i always tried to have someone go with me and i would walk holding onto the cart and only go around the perimeter of the store.  Then whoever was with me would go up and down the isles.  As i got more comfortable, i would add an isle.  i am now able to go alone, sometimes it is still overwhelming and i leave before i have everything, but if my 13 yr old is home i usually make him go with me.  When he grows up he will be quite the bargain finder at the grocery store.   

I hope this helps.

D.

thecakes

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Re: Stanima Low Still After More Than 15 Years.
« Reply #14 on: April 04, 2006, 02:44:05 pm »
   Your talking about shopping?  This is a killer,  in WalMart when you have a cart to hang on {thats good} but your looking for someone and you have to look up and down the isles and left and right too.