Author Topic: Do I have limitations?  (Read 7418 times)

Aussie Chris

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Do I have limitations?
« on: January 11, 2010, 11:58:52 pm »
Since my AN diagnosis and obvious symtoms I have been scared of my physical cababilities. Apart from some balance issues and fatigue I look at my physical abilities in a different way. For example, I previously went water skiing and also got towed behind the boat on an inner tube getting bumped around and thrown into the water, continuously.  Previously it wouldn't have bothered me but now I would be worried about the sucker in my head causing further damage by being bumped around too much. Has anyone had any advice that would help me to feel less paranoid about this? Regards Chris
3.1cm AN treated by radiation approx 3yrs ago

moe

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Re: Do I have limitations?
« Reply #1 on: January 12, 2010, 12:27:10 am »
Chris,
IMO I don't think you need to limit those things that you like to do as long as you are not too dizzy or fatigued. The skull is pretty resilient!
So i say continue to do the things you love and stay in shape while you are at it.
Maureen
06/06-Translab 3x2.5 vascular L AN- MAMC,Tacoma WA
Facial nerve cut,reanastomosed.Tarsorrhaphy
11/06. Gold weight,tarsorrhaphy reversed
01/08- nerve transposition-(12/7) UW Hospital, Seattle
5/13/10 Gracilis flap surgery UW for smile restoration :)
11/10/10 BAHA 2/23/11 brow lift/canthoplasty

sgerrard

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Re: Do I have limitations?
« Reply #2 on: January 12, 2010, 12:39:30 am »
My advice: read up on Stoneaxe. He is a maniac on a stand-up paddle board.  8)

Here is a pic: http://anausa.org/forum/index.php?topic=9875.msg122163#msg122163

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.

Aussie Chris

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Re: Do I have limitations?
« Reply #3 on: January 12, 2010, 01:08:32 am »
Thanks Maureen & Steve. I guess I am the only one who is putting limitations on myself. I feel like such a princess when I am complaining about these things because I know others have more severe symptoms but it is a subject that has been on my mind for such a long time. It helps to have people on this forum to talk to.
3.1cm AN treated by radiation approx 3yrs ago

stoneaxe

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Re: Do I have limitations?
« Reply #4 on: January 12, 2010, 09:29:57 pm »
Hehe...I'll take that as a compliment Steve.. ;D

Don't wory about shaking anything loose...unfortunately these little puppies are in there tight. I was fairly active pre-diagnosis and symptoms but was on a downward spiral because I had let it push me away from those activities (like snow skiing) from a fear of injury. Then I found standup. The great thing about water sports is that if you do fall the risk of injury is less. My advice to anyone is to find something that you can enjoy doing that challenges your balance (without being dangerous) and work as hard at it as you possibly can. There is no question that my inactivity was making things worse.
Bob - Official Member of the Postie/Toasty Club
6mm AN treated with Proton Beam Radiosurgery in March 2004
at Mass General Hospital, Dr's Loeffler and Chapman
Cut the little bugger out the second time around in 2009..translab at MGH with Dr's McKenna and Barker.
http://www.capecodbaychallenge.org

Rc Moser

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Re: Do I have limitations?
« Reply #5 on: January 18, 2010, 08:58:06 am »
I think there maybe a misconception between smaller tumors and larger ones that be pressing on the 12 nerves for alot longer.  What I read and with my experience most of us that had larger tumors for quite awhile seem  to have more in-dept problems than those that had small tumors, I know every case is different, depends where and what the tumor grown off of, doctors preforming the procedure, and how well we recover.  IMO overall larger tumors over time leave us with more issues. So IMO one the  larger (3.0  or above) tumor my have limitations, I know I do and of course I older, but that don't stop me from doing things i want to do, just got to do them slower and think how I can get around certain problems.
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.

Debbi

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Re: Do I have limitations?
« Reply #6 on: January 18, 2010, 12:15:41 pm »
Chris-

What a great question!  I have also struggled with self-imposed limitations - I suspect that most of us do on some level or another at some point along the way.  You are the only one who can decide what feels "safe" for you.  You may decide that some of your pre-treatment activities just don't feel safe anymore - and that's okay.  You'll find other things to replace the things that you choose not to do.  For example, I used to hop up on the kitchen counter to get things out of the top shelves of our cabinets - I don't do that anymore.  Now I stand on a chair, rather than perching on the counter.  My choice.

Give yourself some time and don't beat yourself up.  Everyone travels this path in their own way.

Debbi
Debbi - diagnosed March 4, 2008 
2.4 cm Right Side AN
Translab April 30, 2008 at NYU with Drs. Golfinos and Roland
SSD Right ear, Mild synkinesis and facial nerve damage
BAHA "installed" Feb 2011 by Dr. Cosetti @ NYU

http://debsanadventure.blogspot.com

Adrienne

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Re: Do I have limitations?
« Reply #7 on: January 18, 2010, 01:31:27 pm »
I think I'm the anomoly, as I often say I'm going to do something and *other people* say "Really?  I'm not sure you should be doing that!".  LOL.  I'm not sure how you can 'get over' your self imposed limits?  Maybe if you tackle them each on a 'step by step' basis, doing something a little more 'daring' each step of the way and seeing that you are quite capable?

The water skiing question 'spoke' to me because I'm so NOT a water skiier.  I loved it the few times I got to do it as a kid/teen, but never really got many chances to do it.  Three months to the day after my surgery, this is me.  I took some nasty crashes that day, and just laughed them off.  Your head is pretty durable!  My neurosurgeon assured me that whatever I wanted to do again was fine.
3.0 x 3.0 x 2.5 cm AN, left side.  Diagnosed Feb. 19th,2009
Retro Sig surgery with Dr. Akagami and Dr. Westerberg on May 26/09 at Vancouver General Hospital
SUCCESS! Completely removed tumor, preserved facial nerve, and retained a lot of hearing. Colour me HAPPY!

arkansasfarmgirl

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Re: Do I have limitations?
« Reply #8 on: January 18, 2010, 04:11:12 pm »
I had surgery in Nov 2008 and have been back to riding horses again for a year.  Just today, a colt I was riding decided to lay down in the mud.  I tried to step off of him just as he decided to get up and ended up getting flipped underneath him, and almost got stepped on.  I'm fine, except for my arm, I think I sprained it.  LOL  Right up until my surgery on my 4.5+cm tumor, I barrel raced horses (also got bucked off a few times--darn colts), snow and water skied, rode roller coasters...all apparently with a big ol' tumor in my head.

Vonda

moe

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Re: Do I have limitations?
« Reply #9 on: January 19, 2010, 09:33:47 am »
Adrienne,
Way to go! You too Vonda! You two are younger though!
I hope to start biking again. Just need to buy a new one. Sold mine at our garage sale before we moved to WA.
Keep it up girls!
Maureen
06/06-Translab 3x2.5 vascular L AN- MAMC,Tacoma WA
Facial nerve cut,reanastomosed.Tarsorrhaphy
11/06. Gold weight,tarsorrhaphy reversed
01/08- nerve transposition-(12/7) UW Hospital, Seattle
5/13/10 Gracilis flap surgery UW for smile restoration :)
11/10/10 BAHA 2/23/11 brow lift/canthoplasty

Aussie Chris

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Re: Do I have limitations?
« Reply #10 on: January 22, 2010, 03:32:33 am »
Thanks everyone and sorry I haven't responded earlier. I have been spending this past week backwards and forwards to the hospital. Mum has had a minor stroke & heart issues. Being looked after properly now and showing good signs of recovery. Sort of puts things in persective doesn't it. I will try not to limit myself in future.
3.1cm AN treated by radiation approx 3yrs ago