Zero balance function both ears.

[Dizzyme]

Due to 2 surgical procedures, I have lost balance function in both ears over a period of 7 years.
Please tell me it gets better.  The fatigue is unbelievable at times.

Uneven surfaces and busy environments are very difficult, does it better, if so how long did it take.

[jezsab]

I suggest you read the story about Cheryl Schiltz from the book The Brain That Changes Itself by Norman Doidge. She had almost zero balance and was helped by training with a Brainport balance device. I have had similar help though my balance was not as bad as hers and am grateful for the change it has brought my life. You may find the story interesting and find some similarities. You can find information online as it has been covered in the media in recent years. The book is readily available too and has been a big seller around the world. I was desperate for help and seeing this story, training with the brainport has changed my life in so many positive ways.

My problems were caused by a bleed from an angioma in my brainstem which damaged my vestibular system causing major balance and dizziness problems and a myriad of other neurological problems

good luck with your search for answers
Janet

[spgreenfield]

Dizzyme -

I just sent an email to my buddy Clarice.....she has no functioning vestibular nerve on either side and she's doing great!  Hopefully she'll post and be your cheerleader!!!

One side is bad enough...can't imagine what it's like for you!

Pam

[CHD63]

Thanks, Pam ..... and hi Dizzyme .....

Thanks to multiple brain surgeries and massive radiation to my head as a kid, I have no working vestibular nerves on either side.

Following my first AN surgery, when my only remaining vestibular nerve at that time was wiped out, I had months of vestibular therapy (with a specifically trained vestibular therapist).  I did not use the Brainport system.  My therapist taught me many compensating strategies and I can now "walk and chew gum"  without a cane!

Obviously, with only 2/3 (vision and sensorineuro) of the required systems for balance, I will always have issues when trying to walk in total darkness.  (One system is simply not enough.)  I keep nightlights on in strategic places at all times, plus keep a flashlight nearby (my iPhone has a flashlight app that is wonderful security!).

The biggest help for me is regular exercise now ..... in the form of walking and yoga (with some tai chi moves incorporated).  It is vitally important to keep your core muscles as strong as possible.  As you know, when we start to fall, we have only our vision to quickly determine our position in space.  In addition to issues in darkness, the opposite is also true ..... when everything is white (in snow or in white shower stalls with white curtains!).

You will eventually automatically adapt to some of these things.  For instance, I always lean up against the sink when washing my face, put my elbow against the side of the shower when washing my hair, etc.

Feel free to PM me if you have other specific questions.  I also have a list of exercises that I have found the most beneficial.

Clarice

[spgreenfield]

I knew Clarice would come through!!!!  Also I read on another post about caffeine....my love being Mountain Dew...I forgot had to bid farewell to it since it wrecks havoc with my balance whenever I consume caffeine! So now it's decaffeinated everything for me!   And the snow issue - wow Clarice!  I walked across the street tonight to borrow something from my neighbor and it was hard with all the white snow!!!!  Good call!

Hang in there Dizzyme....I've had the distinct PLEASURE of meeting Clarice in person and you would NEVER KNOW she is balance challenged!!!!

Hugs,

Pam

[Dizzyme]

Thank you all.

I find the fatigue a real struggle but I am determined.

It is great to have people who have been through it.

Thanks so much.

[Echo]

I was listenting to an interview (via a link in an older post) over the weekend with Dr. Stephen Chang.  He was discussing balance issues at one point and stated he believes Vestibular Therapy is "under utilized" in the treatment of AN patients with balance issues.  So, if you can, it might be a good idea to search out some Vestibular rehab.  I am pretreatment with balance issues that bother me pretty much daily to varying degrees.  The neurosurgeon I see didn't hesitate for a second to refer me for Vestibular rehab when I asked what he thought.  I'm now waiting to receive my first appointment and look forward to learning some things to help me now and later.

Clarice - I'm also looking into various different YOGA classes at your recommendation!

Good luck and I hope things improve.
Cathie.

[nftwoed]

Hi Dizzyme;

   Funny how this goes. I'm NF-2 and have read of some return to work w/o problem except deafness, so, each is individual, I guess. Others have ended up wheel chair bound.
   Sounds as though you are using all your cognitive reserve to maintain balance. This is why the exhaustion.
   VRT may still be helpful, even after the 7 years. Otherwise, it seems if you wish to have any left over reserve of strength, a change in life style is going to be mandatory. E.G. I sleep all afternoon.
   For those with vestibular loss, adequate night time sleep is nearly mandatory.

[Dizzyme]

I am finding a long afternoon nap is a must.  I so want to give in and use an electric chair to get around but then again I don't want to give in as many people tell me it gets better.

I feel so much better with sitting or lying down, especially with the bouncy vision.

[nftwoed]

Hi Dizzyme;

   Each persons response is individual. You may, or not, be better off with no peripheral vestibular input.
   The brain simply cannot make adaptations for a damaged nerve which sends irregular signals to it.
   I've read of some go back to work and have minor balance problems with total, bilateral loss. There are others who are wheel chair bound.
   Tells me there are other factors contributing to balance than the vestibular nerves and vestibular nuclei at the brain stem.
   Hang in there. Yes, that wonderful nap/rest =s "escape".

Due to 2 surgical procedures, I have lost balance function in both ears over a period of 7 years.
Please tell me it gets better.  The fatigue is unbelievable at times.

Uneven surfaces and busy environments are very difficult, does it better, if so how long did it take.

[prisca]

You say, "I so want to give in and use an electric chair to get around but then again I don't want to give in as many people tell me it gets better."

Maybe you could view the chair not as giving in, but as a tool to help you now.  Using it when you had to go out for a long time, but doing as much walking as possible when you were home.  I had some brain damage as a result of a car accident and it took me some time to give myself permission to do things that made my life easier (I was brought up to be a good soldier)  In my opinion, when everything you do is harder than it used to be, you need extra sleep and you deserve to make use of whatever can improve your quality of life.