Author Topic: Balance Worse After Surgery?  (Read 9951 times)

Debbi

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Balance Worse After Surgery?
« on: July 08, 2008, 03:25:56 pm »
Hi all-

I am 10 weeks post op, and for the last week or so my balance suddenly seems to be getting worse.  It had been relatively good other than the first couple of days in the hospital.  Now, I am feeling off balance and very "tippy."  Has this happened to anyone else this far post op?

And, I should mention, I'm not taking any drugs other than tylenol or advil; no head congestion, sleeping 8+ hours a night, and I also can't track this to barometric pressure changes...   :P

Debbi, tottering about in NJ
« Last Edit: July 08, 2008, 03:30:26 pm by 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

TLC719

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Re: Balance Worse After Surgery?
« Reply #1 on: July 08, 2008, 03:42:27 pm »
Debbi,     I am two years post op.My balance & steadiness sometimes is so bad I feel like a pirate thats had to much rum.I don't know truly causes this feeling.I've heard everthing from food to the weather.Jack sparrow got nothing on me, but I'm so ready for this bad feeling to move on..   Teresa
Atlanta Ga.AN 2006 right paralysis,balance issues,SS deaf,just happy to be here!

Cheryl R

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Re: Balance Worse After Surgery?
« Reply #2 on: July 08, 2008, 03:57:56 pm »
Debbi, Have you been more active and out walking more?          I have days when I am more wonky headed when am outside or in a mall or big store and thus look more weavy.  Other days at the same places am not very much.                         Make sure to mention it to your dr.        Not sure why  except it could well be nothing.         It might be something that just happens.     I know we think it has been a long time since we had surgery but really isn't.   
   Let is know if you get an answer from the dr.
                                                          Cheryl R
                                                       
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

Debbi

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Re: Balance Worse After Surgery?
« Reply #3 on: July 08, 2008, 04:21:26 pm »
Thanks Cheryl and Teresa - I have really been trying to see if this new feeling corresponds to anything either internal (me) or external (environment) and I just can't find a logical "cause and effect."  In general, since those initial wobbly days, I do notice that weather changes trigger a bit of disequilibrium, but this has been fairly consisten for about 8 or 9 days now, which doesn't follow a weather pattern. 

It is probably nothing, but since it's new for me, it causes me to wonder.  I can't find anything that I'm doing differently.  Willie wonders if it may some sort of delayed reaction as my brain tries to correlate my "new world" and all the altered sensory inputs. 

Until it either goes away or I figure it out, I am being very careful on stairs and in the yard right now.  No sense taking a tumble, is there?

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

jerseygirl

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Re: Balance Worse After Surgery?
« Reply #4 on: July 08, 2008, 06:27:30 pm »
Debbi,

Definitely tell about your balance problems to your doctor but please know that you are not alone. I completed vestibular retraining program in the fall and a month of allergies in May knocked me out so bad that I need another one! I also noticed that when I started walking fast and turning the head to the side really quickly, my balance got worse. I am like a bad car that needs a tune-up way too frequently!

                             Eve
Right side AN (6x3x3 cm) removed in 1988 by Drs. Benjamin & Cohen at NYU (16 hrs); nerves involved III - XII.
Regrowth at the brainstem 2.5 cm removed by Dr.Shahinian in 4 hrs at SBI (hopefully, this time forever); nerves involved IV - X with VIII missing. No facial or swallowing issues.

chocolatetruffle

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Re: Balance Worse After Surgery?
« Reply #5 on: July 09, 2008, 01:28:54 am »
hi debbie, yes, after my surgery, sometimes my balance will be good and the next day, it will be all over the place. Be faithful and keep up with the daily vestibular exercises as it really helps me, now my bad days are minimal that it is almost a thing of the past :D

chocolatetruffle


2.8 cm left AN
Translab @ House/St Vincent's 11/27/07
Drs. Brackmann, Schwartz, Wilkinson, Stefan

Melissa778

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Re: Balance Worse After Surgery?
« Reply #6 on: July 09, 2008, 05:45:24 am »
Debbi-

Sorry to hear abotu your balance issues. I am 8 weeks post op and have up and down days.  I had miserable balance issues my first two weeks.....and now it seems that I have a few good days, and then a really off day.  My doc has suggested possibly some vestibular rehab if it continues to be bothersome for me.  But for now, I'm just taking it day by day...best of luck.  Lay down and take a day to rest :)  I find that seems to help me alot.

Melissa
1.6cm X 1.6cm diagnosed Jan 30 2008
Translab Surgery scheduled for May 15th with Surgery went well, got ALMOST all of it.
GK to zap the rest on 10/22/08
2010 MRI showed no new growth tumor measuring at that time at 1.1 x .4
2011 Holding steady
2012 new growth 1.7 x .7 :( :(

Mickey

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Re: Balance Worse After Surgery?
« Reply #7 on: July 09, 2008, 06:17:00 pm »
Hi Debbi! It`s amazing the similarities that most of us have. As I read things there seems to be a similar pattern of allergies which affect us all. I have a terrible weather change pattern which really brings on some type of sensation in my head starting with a bunch of lightning rod auras. Lasts for about a half hour then I slowly get back my senses and am left with a dull headache. I`m not far from you in NYC and weather patterns have be unbelieveably weird with barometric pressures really doing flip flops on a frequent basis. I`ve never felt this many interuptions in my pattern untill the last few months. Hope this helps a little in trying to find out our mysteries! Mickey

4cm in Pacific Northwest

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Re: Balance Worse After Surgery?
« Reply #8 on: July 10, 2008, 08:49:34 am »
Deb,

You really need to go to a vestibular therapist and get some testing and evaluation done- to find out what points are having the balance issues and how you are compensating (or not). Balance sensors come from the soles of the feet, the hips, the ears and the eyes… take one away, such as the vestibular/acoustic nerve, and your brain needs to be trained on how to compensate.

Don’t let any physician tell you that vestibular therapy does not work.
Here is my story
http://anausa.org/forum/index.php?topic=5584.0

Bobbie made this post
http://anausa.org/forum/index.php?topic=6180.0
I find that walking backward, up hill ,has really helped me retrain. (However the neighbors, I am sure, are quite convinced that I am loopy as they see me do this- I am sure they are convinced it was the brain surgery  :-\ :D ;))


This explains what vestibular therapy is
http://www.vestibular.org/vestibular-disorders/treatment/vestibular-rehab.php

Now that you inner ear was affected you need to “retrain the brain�

Here is a link to help you find a vestibular rehabilitation physical therapist in your area
http://www.vestibular.org/find-medical-help/search-for-a-health-professional.php
Check with you insurance- you “may� need a physicians’ referral.

Here is a search engine to find support groups on balance issues too.
http://www.vestibular.org/support-groups/find-support-group.php

The brain is very plastic and most capable of retraining. The technology they have out there, now-a-days, is amazing. :)

If you have not already seen this documentary video (the vestibular part is in the last 1/3) – I recommend viewing it as it is highly inspirational.
http://www.pbs.org/kcet/wiredscience/video/286-mixed_feelings_.html


Cheers,

Daisy Head Mayzie
4cm Left, 08/22/07 R/S 11+ hr surgery Stanford U, Dr. Robert Jackler, Dr. Griffith Harsh, Canadian fellow Assist. Dr. Sumit Agrawal. SSD, 3/6 on HB facial scale, stick-on-eyeweight worked, 95% eye function@ 6 months. In neuromuscular facial retraining. Balance regained! Recent MRI -tumor receded!

Debbi

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Re: Balance Worse After Surgery?
« Reply #9 on: July 10, 2008, 09:21:07 am »
Thanks for all the great comments and suggestions!  DHM, as usual, you are a treasure trove of information - special thanks!  I am going to take more care in tracking the wobbliies.  I know that weather affects me (you're so right Mickey about the crazy weather in our area) and tiredness factors in.

I am also thinking that the massive amounts of goo I am using in my non-blinking eye are a factor.  I've been using the heavier duty gel more during the day, which has the effect of totally blurring my vision in my right eye.  I think that my brain is a bit confused by this extreme blurriness which is also causing some of the balance issues. 

I have been practicing more yoga lately, and have even started using my Bosu ball again.  Will also look into vestibular exercises as well.

Does anyone else "sway"?  When I am standing still, especially outside, I tend to sway ever so gently.  If I concentrate and brace my feet wider apart, I can stop it, but if I am not concentrating, the swaying starts.  It's not enough that I would fall over, probably just looks like I had "one too many."  (Which isn't the case!)

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

LADavid

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Re: Balance Worse After Surgery?
« Reply #10 on: July 10, 2008, 09:26:30 am »
Debbi
I went through the exact same thing.  I was fine in the hospital and for the first week or so -- then my balance started getting weird.  There were days when it was OK -- and then there were days when I would be staggering around.  Now at 7 months post surgery I am still having issues.  I did start vestibular training in June and here's what I learned.  I was compenstating for lack of balance with leg strength and not allowing my eyes and balance nerve to redevelop.  So my PT gave me some exercises to do.  I place a cushion in a corner of the room -- with walls behind me in case I fall -- and stand on it.  First exercise is with eyes open looking straight ahead.  I move my feet as close together as I can while holding that postion for 30 seconds.  That helps the eyes adjust.  Then I close my eyes with my feet as close together as I can get them and hold that for 30 seconds without falling.  I started with my feet about a foot and a half apart.  That helps the balance nerve adjust.  Then with eyes open, I stand with feet apart while shaking my head "no" -- what that does I have no idea but I always fall over.  I am seeing a little improvement -- especially with eyes open.  What's weird is that I can run -- in a straight line -- but if I have to veer suddenly -- over I go. I still can't clear the cobwebs and the wonky-head.

David
Right ear tinnitus w/80% hearing loss 1985.
Left ear 40% hearing loss 8/07.
1.5 CM Translab Rt ear.
Sort of quiet around here.
http://my.calendars.net/AN_Treatments

Jim Scott

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Re: Balance Worse After Surgery?
« Reply #11 on: July 10, 2008, 01:58:23 pm »
Hi, Debbi:

Just popping in to comment that I think your husband may be on to something: that your brain is compensating and you're experiencing the consequences of the transition...disequilibrium.  I didn't need vestibular therapy but if you do, it seems quite useful.

Post-op, after 3 visits, the visiting physical therapist said I didn't need her anymore.  I was pleased as I hated those exercises.  From that point on, I just did my normal stuff, was very conscious of my balance, added a lot of walking to my routine and whatever was a little difficult I made sure to keep doing until I surmounted the problem (like walking backward).  I'm probably less well-balanced than I was before the AN made itself known by disturbing my normal balance but I'm very functional and whatever imbalance issue remains, they're invisible to others and don't affect my life in any way. 

I hope you'll have a similar experience and that your balance will improve with time and practice.

Jim
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.

Debbi

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Re: Balance Worse After Surgery?
« Reply #12 on: July 12, 2008, 12:39:23 pm »
And, for those of you who are interested, here's a picture of me on the Bosu Ball - right before I had to leap off!  The Bosu ball is really great for working on balance - tough, but great!

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

4cm in Pacific Northwest

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Re: Balance Worse After Surgery?
« Reply #13 on: July 13, 2008, 10:44:02 pm »
 8) WAY to GO Debbi!

Keep moving forward! ;D

DHM
4cm Left, 08/22/07 R/S 11+ hr surgery Stanford U, Dr. Robert Jackler, Dr. Griffith Harsh, Canadian fellow Assist. Dr. Sumit Agrawal. SSD, 3/6 on HB facial scale, stick-on-eyeweight worked, 95% eye function@ 6 months. In neuromuscular facial retraining. Balance regained! Recent MRI -tumor receded!

Omaschwannoma

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Re: Balance Worse After Surgery?
« Reply #14 on: July 14, 2008, 06:45:20 am »
Would like to add to this post on "vestibular exercises".  They most certainly help and David's one where you're on the cushion in a corner is very good.  This similates "soft surfaces" like grass, yoga mats, sand, carpets, etc. 

Try his exercises and add my favorite one....with legs apart extend arm out in front of you holding thumb up.  Focus on thumb and "slide" it slowly right and left while keeping your balance.  Do this for up to one minute.  The movement isn't great, just slide it far enough so the eyes end up in the corners of your sockets then slide the other way.  With time you will be able to move your arm/hand quicker. 

When you've got this one down, try a more challenging one.  With feet hip width place left or right foot ahead of the other similating a "walking step".  Then extend arm with thumb up and begin the slow slide left and right all the while staring at your thumb.  You will begin to see the background moving rapidly almost a blurr. 

These exercises (staring at thumb) similate being able to focus on one object while moving your head and at the same time the background moving faster without falling off balance.  This happens to us outside, malls, large open areas in stores, etc.  Really helps get rid of the "oops" moments when we turn our heads quickly on soft surfaces or while walking.  The key is to start ever so slowly increasing speed when you've got the "slow mo" down pat. 

Add another one when you're ready.  Try staring at your thumb while moving it on a diagonal plane.  Raise right arm up and to the right, stare at thumb while you lower arm across chest until you see your left shoulder.  Bring thumb back across chest and up to the right (head movement is up to the right, down to the left).  Do this over and over increasing speed, then switch to the left.  Switch up your foot stance too.  This similates looking up at trees and down at the ground quickly. 

Very annoying to have to do these, but very effective!  Good luck everyone hope this helps.  And a word of caution with yoga (I'm an instructor), be mindful of turning your head with spinal twisting asanas.  You can cause trigeminal nerve to "fire" creating a headache.  I stopped turning my head while spinal twisting and this helped.  I used to create a headache sometimes where they would start in the incision occiput area.  Be mindful always of tension with facial muscles, tongue, neck, shoulder and muscles used to control scapulas.  Always relax them while in the posture, if you find you hold tension in these areas you need to back off the posture (don't go so deep), use blocks, blankets to support you until you can perform them without creating tension in these areas. 

Have a great day everyone!
1/05 Retrosigmoid 1.5cm AN left ear, SSD
2/08 Labyrinthectomy left ear 
Dr. Patrick Antonelli Shands at University of Florida, Gainesville, FL
12/09 diagnosis of semicircular canal dehiscence right ear