Author Topic: Dancing in the Dark??  (Read 9147 times)

JudithF

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Re: Dancing in the Dark??
« Reply #15 on: June 06, 2009, 01:46:01 pm »
iI don't know if this is common, but I can't walk steady and look up...like at the sky. I have to stop and look. Day or night.
JudithF
Suboccipital. Bone removed and never replaced. 1983, 2 cms, totally deaf on right, balance nerves removed, had to learn to walk again, balance problems persisit, nauseous daily, 62 yrs.

cin605

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Re: Dancing in the Dark??
« Reply #16 on: June 06, 2009, 04:07:54 pm »
Ditto!
2cm removed retrosig 6/26/08
DartmouthHitchcock medical center lebanon,N.H.
43yrs old

russcape

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Re: Dancing in the Dark??
« Reply #17 on: June 06, 2009, 04:23:52 pm »
Hi;

   I believe for decent balance in the dark, all aspects, and both sides of nerves utilized for the VOR, Vestibular/Ocular/Reflex, must be fully healthy and functional.

Syl

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Re: Dancing in the Dark??
« Reply #18 on: June 06, 2009, 10:00:22 pm »
I sleep with a night light. And I also find it hard to walk and look up at the same time. I have to stop or hold on to someone's arm to look up.

Syl
1.5cm AN rt side; Retrosig June 16, 2008; preserved facial and hearing nerves;
FINALLY FREE OF CHRONIC HEADACHES 4.5 years post-op!!!!!!!
Drs. Kato, Blumenfeld, and Cheung.

joebloggs

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Re: Dancing in the Dark??
« Reply #19 on: June 07, 2009, 06:01:25 am »
Judith - I was like that for the first few weeks after surgery  - I had to stop to look up as I was walking.  Now seems ok.  Today I had a breakthrough - I could walk holding a full cup of coffee and look at the cup without getting the wobbles.  Since the surgery I couldn't look at the mug while walking - I had to look straight ahead, but now, hey presto!  Result, now I'll stop spilling everything!

Stoneaxe - Ha ha.... it does seem like an ad for SUP doesn't it?  Here's an ad - I fell off twice today , even did a massive faceplant!  Water wasn't too cold though!
Right sided AN 2.7cm at last MRI.  Hearing loss/facial numbness.  Translab scheduled March 11th 2009.  Translab at Royal Melbourne Hospital, Australia successful!  Total tumour removed, SSD, no facial issues, numbness has left the building, balance issues but they'll get better and I'm loving life!

NancyMc

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Re: Dancing in the Dark??
« Reply #20 on: June 07, 2009, 02:18:55 pm »
Quote
I believe for decent balance in the dark, all aspects, and both sides of nerves utilized for the VOR, Vestibular/Ocular/Reflex, must be fully healthy and functional.

Oddly, but then we all know that I'm at least a little odd, my balance in the dark and with my eyes closed has improved since surgery!
And if I'm deciphering my operative report, my balance nerve was cut.
Watch and Wait since 9/19/01
Increased from 1.1 x 1.9 to 1.9 x 1.9 cm as of 10/27/08
Right SSD, tinnitus, compensating balance
Dr. McKenna at Mass Eye and Ear and Dr. Barker at MGH
Translab April 8, 9 hours, 18 mm Tumor all gone SSD some facial weakness

stoneaxe

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Re: Dancing in the Dark??
« Reply #21 on: June 07, 2009, 09:21:13 pm »
Quote
I believe for decent balance in the dark, all aspects, and both sides of nerves utilized for the VOR, Vestibular/Ocular/Reflex, must be fully healthy and functional.

Oddly, but then we all know that I'm at least a little odd, my balance in the dark and with my eyes closed has improved since surgery!
And if I'm deciphering my operative report, my balance nerve was cut.

I don't think that's all that odd Nancy. I'm hoping for a similar outcome. The way I understand it is that the nerve is functioning like a short circuit with the AN on it. The data being transmitted is bad...your brain doesn't know its bad so it continues to process it.....bad balance. When the nerve gets cut. No more data and the brain has to recalibrate using only the remaining available data which is all good....better balance.
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

NancyMc

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Re: Dancing in the Dark??
« Reply #22 on: June 08, 2009, 02:41:56 pm »
You're so smart!   ;)
This morning I had my first dentist appointment post-op . . . a little challenging with the spittoon, but the decreased sensation of the gum was a bonus when she went in there with the probe!
Watch and Wait since 9/19/01
Increased from 1.1 x 1.9 to 1.9 x 1.9 cm as of 10/27/08
Right SSD, tinnitus, compensating balance
Dr. McKenna at Mass Eye and Ear and Dr. Barker at MGH
Translab April 8, 9 hours, 18 mm Tumor all gone SSD some facial weakness

wendysig

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Re: Dancing in the Dark??
« Reply #23 on: July 17, 2009, 01:26:42 am »
Clarice,

I've memorized the layout of my house and furniture placement and have less trouble than I used to, but put me in an unfamilar setting and I'm literally lost in the dark.  I was going to meet my daughter at a friend's house two blocks away and it was dark enough that night that I came close to falling more than once and actually did fall in the grass.  Thankfully it needed mowing and provided a nice cushion.  I learned my lesson though, no more solo walking in the dark.

Wendy
1.3 cm at time of diagnosis -  April 9, 2008
2 cm at time of surgery
SSD right side translabyrinthine July 25, 2008
Mt. Sinai Hospital, New York, NY
Extremely grateful for the wonderful Dr. Choe & Dr. Chen
BAHA surgery 1/5/09
Doing great!

wcrimi

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Re: Dancing in the Dark??
« Reply #24 on: July 17, 2009, 08:55:17 am »
FWIW:  Although I had a good surgical & radiation outcome with almost no complications to speak of, my balance has never quite returned to where it was before my AN manifested itself.  I don't have much trouble navigating in the dark, but I do feel a bit uneasy if there is absolutely no light at all.  As long as there is even a tiny bit of light, I'm O.K.  I assume this is because I depend on my sight for balance a lot more than I used to.  I have no problem rapidly walking up or down a stairway without holding on to the railing, but I do have to look down at the steps most of the time, although not continually.  I consider such things small deficits that I've adjusted to and easily learned to live with, as we all do.

Jim


Jim,

My current experience is similar yours (only on my very best days though), but I have some remaining wonky headedness while in motion all the time.  It feels like waves going through my brain. Somehow though, I seem to be able to fight through it and don't allow it to stop me.  I think the key for me has been my willingness to challenge my balance to whatever the limit was at any point during my recovery.  For example, when I started tennis, all I did was hit a ball against a wall back to myself. I never moved much out of position except a little step forward, back or to the side.  If that wasn't enough to get the ball, I missed. LOL.  After awhile, I pushed my self to go after balls that weren't so close. THen I started playng with an opponent. Then I started purposely hitting to places that would force me run or stretch, then run AND stretch etc... I think that depsite the wonkiness, I now have a level of confidence that allows me to cope better with things like the dark, stairs, etc... I think pushing is critical to improvement. 
 
All that said, it's definitely trickier in the dark for me too. 





 



 
1 cm, 6mm, 4mm on Left side. Surgery performed 11/6/2008 by Dr. Kalmon Post and Eric Smouha at Mt. Sinai Hospital in NYC.
Normal hearing before, 85%-90% now, dizziness when walking or turning head, annoying hissing and high pitched tinnitus on and off, eyes have trouble adjusting to rapid head move