Author Topic: The more bizarre things that result from SSD or vestibular dysfunction  (Read 5838 times)

amymeri

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My last post and all the replies got me thinking about all the odd adjustments I have made to having no hearing and no vestibular nerve on the right and I thought I would ask others about their experiences.

1.  Noisy, busy environments make me feel hot and disoriented
2.  If I am riding my bike, I can't turn my head to talk or I will steer off course and fall over.
3.  If I lose balance it is often front to back, so squatting can result in me tipping forward if I don't concentrate.
4.  I run into walks and doors on my "bad" side sometimes!
Amy

4 cm right AN removed restrosigmoid 4/13/06
Partial facial paralysis, SSD and trigeminal numbness for now

lori67

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Re: The more bizarre things that result from SSD or vestibular dysfunction
« Reply #1 on: January 11, 2010, 02:29:04 pm »
Amy,

I have the same problem on my bike.  I always make my family ride in front of me so I don't have to turn my head.  Good thing I have a place to ride other than a busy street, or I'd be in trouble!  I also walk into things, but on both sides.  That was fun when I was on blood thinners for a year - made for some nice bruises!

The noisy environments don't bother me too much anymore.  I still don't like them, but honestly, I never did.  I did have a hard time at my nephew's wedding recently - the dj was using those spinning lights, plus is was crowded, loud, etc.  I was standing still trying to have a conversation and all of a sudden just started to fall over backwards.  Fortunately, I grabbed the back of a nearby chair and was able to look like I meant to just lean on it casually.   ;D

It's funny the little things that just become second nature to us after a while.

Lori
Right 3cm AN diagnosed 1/2007.  Translab resection 2/20/07 by Dr. David Kaylie and Dr. Karl Hampf at Baptist Hospital in Nashville.  R side deafness, facial nerve paralysis.  Tarsorraphy and tear duct cauterization 5/2007.  BAHA implant 11/8/07. 7-12 nerve jump 9/26/08.

leapyrtwins

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Re: The more bizarre things that result from SSD or vestibular dysfunction
« Reply #2 on: January 12, 2010, 08:13:53 am »
Amy -

if it makes you feel any better, I can relate to numbers 2 - 4. I've had all these experiences, even though 98% of the rest of the time my balance is not an issue.

Sudden turns of the head while riding a bike are NOT a good thing.  I try to avoid them at all costs.

Be careful out there  :)

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

wendysig

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Re: The more bizarre things that result from SSD or vestibular dysfunction
« Reply #3 on: January 12, 2010, 04:38:21 pm »
Hi Amy

I have to agree about noisy environments -- they just make me frustrated because I can't hear well enough to keep track of conversations, ugh!!  I have a huge family and we get together a lot, sadly for me, I don't enjoy these gatherings as much as I used to. 

I haven't had the nerve to get back on my bike yet, so nothing to report on this matter.

I walk into doorways and brush walls and furniture all the time on both sides.  I'm like a Weeble, I wobble but I don't fall down!   ;D

Sudden turns when I'm walking, whether I just turn my head or my whole body aren't good so I try not to do that too often. If I'm driving I'm okay since I'm sitting down.  For me, my body has to be in motion for things to go wrong.

Getting on escalators that are going down are a challenge and I wouldn't dream of walking down a flight of stairs without holding on.

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!

Pembo

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Re: The more bizarre things that result from SSD or vestibular dysfunction
« Reply #4 on: January 14, 2010, 10:25:55 am »
I'm laughing at #3. I was in a store, squatting down to look at a display, and fell right on my a*%. I also enjoy being on Wii Fit, and it telling me that I have balance problems. LOL

Noisy enviornments have gotten better but it's still hard to hear.

My other one, is the ceiling fan. I can't look at it or it makes me feel wonky-head. I put it on while I work out and have to turn it off when I do the cool down or close my eyes.
Surgery June 3, 2004, University Hospitals Cleveland, BAHA received in 2005, Facial Therapy at UPMC 2006

pjb

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Re: The more bizarre things that result from SSD or vestibular dysfunction
« Reply #5 on: January 14, 2010, 10:30:26 am »
You explained everything perfectly at first I had a panic attack I thought I was going through the hot flashes again I said oh no not again once was enough....

Pat
Diagnosed with a 1 cm. AN had Retrosigmoid
Approach surgery July of 2009, several problems after surgery.

reg

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Re: The more bizarre things that result from SSD or vestibular dysfunction
« Reply #6 on: January 14, 2010, 03:03:52 pm »
dont feel like the lone ranger on this i experience the same symptoms the disorientation really bothers me but not so much as the balance issues you see i have a harley that i havent rode in three years and thats killing me lol
4.5 cm retro surgical removal dec 06

amymeri

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Re: The more bizarre things that result from SSD or vestibular dysfunction
« Reply #7 on: January 15, 2010, 12:45:12 pm »
 ::)Oh lordy, don't even bring up the Wii Fit!  If I hear it tell me I am a little shaky I am going to throw the controller at the screen.  There are a couple body tests where they want you to close your eyes and balance!  As if...I just laughed out loud. 
Amy

4 cm right AN removed restrosigmoid 4/13/06
Partial facial paralysis, SSD and trigeminal numbness for now

moe

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Re: The more bizarre things that result from SSD or vestibular dysfunction
« Reply #8 on: January 26, 2010, 10:50:21 am »

 I'm like a Weeble, I wobble but I don't fall down!   ;D


Showing your age!
Heard the joke about the Bulls that didn't fall down during the tornado?

It was  a miracle that they didn't get blown away with all the other  animals/livestock.
Their response was "We bulls wobble but we don't fall down!"
Lame I know.

Here's to good balance days :)
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

leapyrtwins

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Re: The more bizarre things that result from SSD or vestibular dysfunction
« Reply #9 on: January 26, 2010, 09:24:20 pm »
Actually I think the joke is kind of cute, Moe.

And, I confess, I too remember Weebles.  Guess I'm an oldie also  ::)

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

cecile k

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Re: The more bizarre things that result from SSD or vestibular dysfunction
« Reply #10 on: January 26, 2010, 11:13:35 pm »
It's been over 8 years post op and I still don't dare get on a bike.

Walking - I have to look down at the sidewalk to keep my balance while walking.

Noisy environments - I avoid them like the plague!

Cecile

leapyrtwins

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Re: The more bizarre things that result from SSD or vestibular dysfunction
« Reply #11 on: January 27, 2010, 07:05:05 am »
Cecile -

I'm surprised that you have to look down at the ground while walking.

The trick that always worked for me in the first few weeks post op (when my balance was a huge issue) was focusing on an object ahead of me and walking towards it.  Once I reached that object, I'd focus on another distance object, and so on and so on.

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

wendysig

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Re: The more bizarre things that result from SSD or vestibular dysfunction
« Reply #12 on: January 29, 2010, 10:12:15 pm »
Jan -

I did the  same thing and on days when wonky head strikes again I still  do.  It works much better than looking down (which I also did at first after my surgery).

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!

Pembo

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Re: The more bizarre things that result from SSD or vestibular dysfunction
« Reply #13 on: January 31, 2010, 01:17:47 pm »
I can't let go of the handles on the treadmill unless I'm walking VERY slow.
Surgery June 3, 2004, University Hospitals Cleveland, BAHA received in 2005, Facial Therapy at UPMC 2006

TriMan

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Re: The more bizarre things that result from SSD or vestibular dysfunction
« Reply #14 on: February 02, 2010, 06:17:06 pm »
How about doing ANYTHING in the dark that requires walking or moving around? I find myself making those late-night trips to the bathroom with my feet wider apart than they would be during the day. Standing at the urinal in the dark is a feat, also. I'm a Private Pilot and enjoy looking up at planes as they fly by. The problem without stereo hearing is that I can't find the darn plane. I look around until the engine sound is fading away and I know I've missed another one. Listening to music isn't quite what is used to be either. I recently bought the new Beatles remastered CD box set. I opted for the mono version since I couldn't tell the difference with my iPod bud set anyway. The channel separation gets lost when I can only hear one channel. On the other hand, I've saved lots of money not wanting to buy that big home theatre system with surround sound!