Author Topic: Do vestibular exercises help with wonkihead?  (Read 9032 times)

lrobie

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Do vestibular exercises help with wonkihead?
« on: September 20, 2012, 08:56:46 am »
Have any of you that have had the wonkiness feeling in your head used the vestibular exercises?  If so, do the exercises help?  I'm trying to figure out if the wonkiness is because the balance nerve was cut.  Or is it because we had brain surgery and stuff was moved around in there??  It seems that my balance is okay with only a few mis-steps here and there.  The wonkiness is all the time.  I'm getting frustrated with the world bobbling around me when moving my head.  So when I was going to the physical therapist, he would ask how my balance was.  My answer was always, balance is fine but the world is bobbling.

Lisa
6/2009 7mm x 4mm  W&W
8/2011 9.5mm x 5mm
2/2012 UPMC Follow-up , slight growth
Surgery on 7/18/12 w/Drs. Friedman & Schwartz (mid-fossa)
www.caringbridge.org/visit/lisarobie

LakeErie

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Re: Do vestibular exercises help with wonkihead?
« Reply #1 on: September 20, 2012, 11:18:55 am »
I had the bobble head feeling almost constantly for 7 months, especially outdoors, which lessened in intensity over the 7 months. I did my own exercises which consisted of head movements when walking. I also found the problem was worse if I sat too long when reading or wartching television. I began getting up and moving around with head movements a few times an hour and that helped.
Today, at 11 plus months, I have the occasional wonkiness, but I can get rid of with it quickly with rapid head movements.
My impression is that, while my vestibular system has compensated for the loss of balance input, my brain can be lulled back to its former state absent some stimulus from movement. Getting up in the morning, first time outdoors for the day, sitting too long, can all lead to temporary wonkiness for me.
So, yes, and to the point, my wonkiness and bobble head did improve with vestibular training. I found my training on YouTube courtesy of the vestibular training videos from Univ of Mich physical therapy dept. I especially found useful the walking in figure eight patterns.
Overall, I feel 100% right now with just momentary relapses to my previous problems. I assumed I needed to challenge my balance system to get it to correct. I am also age 66 and balance restores more slowly after age 60 according to Johns Hopkins website on AN's. Good luck and keep challenging your vestibular system,
« Last Edit: September 21, 2012, 09:41:31 am by LakeErie »
4.7 cm x 3.6 cm x 3.2 cm vestibular schwannoma
Simplified retrosigmoid @ Cleveland Clinic 10/06/2011
Rt SSD, numbness, vocal cord and swallowing problems
Vocal cord and swallowing normalized at 16 months. Numbness persists.
Regrowth 09/19/2016
GK 10/12/2016 Cleveland Clinic
facial weakness Jan 2017

PamJ

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Re: Do vestibular exercises help with wonkihead?
« Reply #2 on: September 20, 2012, 12:15:59 pm »
Hi Lisa I was given head exercises to do and they made me feel really sick but I stuck to them and I've no more wobbly head.  I was told to focus on something in front of me and keep my eyes on it while turning my head side to side.  Also to stand up with my arms across the front of me and turn round 10 times one way then sit down then stand up again do 10 the other.  I had a lot more to do but I really really believe they worked for me.  Good Luck.
I find the only time I have a bit of a 'wobbly' is when I'm really tired
« Last Edit: September 20, 2012, 12:18:39 pm by PamJ »
March 2011 - Acoustic Neuroma translab surgery
July    2011 - Tarsorrhaphy surgery
June   2012 - BAHA abutment surgery
July    2012 - Tarsorrhapy reversed
Sept   2012 - BAHA (Pronto Pro) fitted
Sept   2013 - Diplopia Surgery
April   2014 - Platinum chain surgery

lrobie

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Re: Do vestibular exercises help with wonkihead?
« Reply #3 on: September 21, 2012, 07:55:32 am »
Yesterday, I decided I was going to take a break at work and go through my vestibular exercises.  I felt a little nauseous, but kept going.  I'm going to make it part of my workday routine now and see how things go.  I also realized that I thought my balance was good, but when I challenged it with something I used to be able to do, it's not as good as I thought.

As Dori might say on Nemo, just keep going....just keep going...

Lisa
6/2009 7mm x 4mm  W&W
8/2011 9.5mm x 5mm
2/2012 UPMC Follow-up , slight growth
Surgery on 7/18/12 w/Drs. Friedman & Schwartz (mid-fossa)
www.caringbridge.org/visit/lisarobie

Sheryl

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Re: Do vestibular exercises help with wonkihead?
« Reply #4 on: September 22, 2012, 08:39:19 pm »
My husband went through vestibular therapy - it was a great help BUT  as they told him and he found out - you feel worse before you feel better.  Also, it is important to find someone specifically trained in this therapy, not just a regular physical therapist.  The gal he went to was hospital based and only did vestibular therapy. 

Good luck,
Sheryl
9th cranial nerve schwannoma - like an acoustic neuroma on another nerve. Have recently been told it could be acoustic neuroma. Only 7 mm of growth in 18 years. With no symptoms. Continuing W&W

susierg

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Re: Do vestibular exercises help with wonkihead?
« Reply #5 on: October 03, 2012, 06:07:29 pm »
I am 9 weeks post op today and went through 4 weeks of PT.  My balance and wonkiness was improving slowly.  I returned to work part time 3 weeks ago and the last few days, I feel as if everything has taken a dramatic turn for the worse.  I have a desk job, so I'm wondering if sitting for long periods of time has made the difference.  I talked with my PT this morning, and he thinks that my body could just be tired, but sometimes I wake up after a good nights sleep feeling this way.  The last couple of days, its been so bad that I have to hold on to things when I walk.  I am still doing my balance excercises when I get home, but have been so tired that I'm not doing them as much as when I was home recovering.  When does it get better???  I'm so tired of hearing "it just takes time" even though I know its true.  I just don't understand why all of the sudden things have gotten so much worse.
4mm AN diagnosed 8/2007.  Watch and wait for 5 years.  5/2012 grew to 7x4x4.
Mid Fossa 7/2012 at MD Anderson, Houston,Tx
SSD but still hoping it will return.

LakeErie

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Re: Do vestibular exercises help with wonkihead?
« Reply #6 on: October 03, 2012, 07:44:25 pm »
Susierg - An ENT who had no part in my surgery told me that the brain works very hard to compensate for the loss of hearing and balance input on one side, and other input losses if other nerves were involved. Your brain is retraining itself, it is a conditioning process, and you need to provide rest as well as challenging it. When you are tired physically from work or whatever, your brain is tired as well. It may be that your relapse, if that is a correct description of your experience, is a product of your return to work combined with everything else you do. You may need more periodic rest.
Building any conditioned, physical response in your body requires rest following exercise to allow for improvement. You are right that recovery from wonkiness takes time, it took me exactly 7 months, but I gradually improved over that time. I guess the recipe is to challenge your vestibular system regularly, allow time to rest, and be patient. Good luck.
« Last Edit: October 03, 2012, 07:46:40 pm by LakeErie »
4.7 cm x 3.6 cm x 3.2 cm vestibular schwannoma
Simplified retrosigmoid @ Cleveland Clinic 10/06/2011
Rt SSD, numbness, vocal cord and swallowing problems
Vocal cord and swallowing normalized at 16 months. Numbness persists.
Regrowth 09/19/2016
GK 10/12/2016 Cleveland Clinic
facial weakness Jan 2017

lrobie

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Re: Do vestibular exercises help with wonkihead?
« Reply #7 on: October 04, 2012, 02:53:02 pm »
I think it does have something to do with sitting at a desk all day too.  Mine seemed to get worse after returning to work.  I sit at my desk working on the computer.  If you saw another one of my posts, I discovered that I wasn't really "challenging" my balance by making myself more dizzy or off-balance.  That's how your brain learns to correct it, but has to be done often.  I've been doing the balance exercises with my eyes closed now and it seems to be helping.  We will get there eventually.

Lisa
6/2009 7mm x 4mm  W&W
8/2011 9.5mm x 5mm
2/2012 UPMC Follow-up , slight growth
Surgery on 7/18/12 w/Drs. Friedman & Schwartz (mid-fossa)
www.caringbridge.org/visit/lisarobie

susierg

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Re: Do vestibular exercises help with wonkihead?
« Reply #8 on: October 04, 2012, 07:07:59 pm »
Thanks for the input and advice.  I called my ENT yesterday and he wants to see me tomorrow just to make sure that there isnt something else going on.  I made myself do my exercises when I got home from work today and felt a little better after, but then I rested on the couch for about an hour and balance is off again.  I will feel better after I see the Doc tomorrow I think.  I have a tendancy to get anxious about things....maybe need to double up on the Xanax!  LOL  Will let ya know what he says.  Thanks again.
4mm AN diagnosed 8/2007.  Watch and wait for 5 years.  5/2012 grew to 7x4x4.
Mid Fossa 7/2012 at MD Anderson, Houston,Tx
SSD but still hoping it will return.

It is what it is

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Re: Do vestibular exercises help with wonkihead?
« Reply #9 on: October 31, 2012, 09:54:40 pm »
My wonkiness is usually better than my balance issues and balance gets much better and then for no apparent reason gets worse again.  Recently the wonkiness came back for a couple days after I hadn't experienced it for awhile.  Now it is gone again.  Someone could do a research project on some of these things.  There are sure enough of us who may be willing to participate. 

karen
.7cm, left side AN , Tinnitus, Hearing preserved, Middle Fossa 8/1/12 at HEI, Drs Friedman and Schwartz, Sharing your story is extremely helpful to me.

susierg

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Re: Do vestibular exercises help with wonkihead?
« Reply #10 on: November 01, 2012, 03:15:52 pm »
Hand raised!!!
4mm AN diagnosed 8/2007.  Watch and wait for 5 years.  5/2012 grew to 7x4x4.
Mid Fossa 7/2012 at MD Anderson, Houston,Tx
SSD but still hoping it will return.

PamJ

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Re: Do vestibular exercises help with wonkihead?
« Reply #11 on: November 02, 2012, 03:40:51 am »
I'm 18 months post op and my balance has been really good these last few weeks, having said that I went away for a few days last week and went to get out the bath and got wobbly fell onto the radiator and bruised my ribs, kidney and finger so do be careful.
March 2011 - Acoustic Neuroma translab surgery
July    2011 - Tarsorrhaphy surgery
June   2012 - BAHA abutment surgery
July    2012 - Tarsorrhapy reversed
Sept   2012 - BAHA (Pronto Pro) fitted
Sept   2013 - Diplopia Surgery
April   2014 - Platinum chain surgery