How do you know how much of the balance nerve is dead?

[Tisha]

As I read old posts, I notice people saying that a certain % of their balance nerve is gone, or dead?  How did you find that out?

[sunfish]

The neuro-otologist told me after vestibular testing that I had lost 46% of the nerve's balance function on my AN side.  I think a doctor on the Cyberknife site wrote that he doesn't think this kind of % estimate makes any sense.  So I'm not sure what all this means, either.  I just know that's what they told me after testing.

I guess it means the nerve on my AN side is half dead.  From what I've read, I might be better off if the nerve would just go ahead and die, and the other side would take over.

Tisha, the really exciting news for me is that I've had two, really good days in a row!  Very little wonkiness this weekend.  Let's keep our fingers crossed!

[CHD63]

Tisha .....

I'm not sure the percentage of vestibular nerve function tells anyone much.  When a vestibular nerve is damaged, it begins to send erratic signals to the brain from that side.  Presuming the other vestibular nerve is functioning normally, the brain does not know what to do with the misfires.  Normally the two nerves work in tandem to assist us in staying upright or balanced.  Like sunfish said it is almost worse when one side is sending incomplete signals, than if it were sending no signals, because the brain compensates by using only the good signals from the one normally functioning side.

My situation is different in that because of my two surgeries, I have no functioning vestibular nerves on either side so I have to depend entirely upon my vision and sensorimuscular aspects.  I have had multiple tests for balance disorders.  Check out:  http://www.tchain.com/otoneurology/testing/engrot.html

Through vestibular rehab my brain has almost completely compensated.  Everyone is different and the length of time to compensate varies greatly.  For some people, the compensation began before they even knew they had an acoustic neuroma (vestibular schwannoma) and was largely complete before treatment so they had virtually no balance issues post-treatment.  Others had not begun the process so it was a significant factor post-treatment.

Hope this helps.  (Remember, I am not a medical doctor so this is strictly based on my own experiences and research.)

Clarice

[mk]

The only way to get a "percentage" is with a VNG (videonystagmography) test. See http://www.stopdizziness.com/services_vng.asp
In particular the "caloric" testing, where they pour warm and cold water individually in your ears is used to differentiate the response between the two sides.

I never had any balance problems - never experienced dizziness or vertigo. The neurotologist told me after completing the regular "walk in a straight line" etc. tests, that my balance looks "pretty darn good". So he sent me for a VNG test. Well, it came back saying 87% weakness on the AN side. So I guess the balance nerve is pretty much dead, but the other side has compensated. The only time I knew there was a difference was during the VNG test, when they poured the warm/cold water. I felt dizzy on the good side, whereas there was no response on the AN side.

Marianna

[Tisha]

THanks Sunfish, Clarice and Marianne,

The information you've provided is very helpful.  I've gone a week now with now episodes.  I started feeling that heaviness and weird wonky head twice and took a pill.  It stopped it before it started, which is how I've been managing most of the time.  I find that as the days pass without an incident I become less anxious.  I feel like I"m on pins and needles waiting for an attack, and that's no way to be.  Sunfish...have you had more good days?  I end the day now thinking, "it was a GOOD day" to be able to function normally...who cares about all the little things that used to drive me crazy.

I see my neuro ENT on Friday, anxious to hear what he has to say!  Tisha

[CF]

I took a vestibular test a few months ago, and tomorrow I assume I'll discuss it with the doctor as part of my "annual". No, I didn't bother inquiring on the results of that test, cuz I already knew the answer ..... big ZERO percent balance on the AN side  . Basically, during the test, they shot some warm air, then some cold air, through my AN side ear. No problem. I was like .... "hey, looks like I might NOT have ANY balance issues after all, maybe I've been imagining them, cuz I feeling no effect and pretty darn stable!".

Then they shot some warm air, then cold air .... through my non-AN side ear. Holy Rollercoaster, Batman! I started clenching my teeth, and gripping the table I was laying on. I thought I was going to fall, my adrenaline started pumping, and I was scared! Wow ....

So apparently, from that episode, my eye movements from that test were all recorded through some kind of camera. I guess with my AN side .... my eyes were as smooth sailing as an expert poker playin' bluffer  . But with the non-AN side .....probably looked like this:  ... and somehow they can quantify it and get a percentage.

[CF]

I started feeling that heaviness and weird wonky head twice and took a pill.  It stopped it before it started, which is how I've been managing most of the time.  

Tisha, please do tell me the name of that pill! I was planning on asking my doctor tomorrow if there was anything I could take to battle "the feeling", sounds like there is! Hopefully, he knows about it ..... cuz if not, I'll be looking for a new doctor by COB tomorrow  

[Tumbleweed]

FWIW, I find that taking the following natural supplements keeps me feeling good:
Bromelain (anti-inflammatory derived from pineapple) 2x/day
Curcumin (anti-inflammatory/extract of turmeric, a common spice; 665 mg 2x/day)
Vitamin E 400 IU once or twice per day

(I also take vitamin C and calcium/magnesium supplements for my general health each day.)

I also feel much better if I eat a lot of steamed leafy green vegetables and salmon regularly.

After a few years of this routine, I slacked off. Within a few weeks I began feeling worse (in fact, I had vertigo for the first time in about 9 years or so), so I resumed my program and started feeling better again within about a week. Coincidence? Perhaps. YMMV.

Best wishes,
TW

[Tisha]

I'm glad you're feeling better Tumbleweed!  I have also been feeling better, my update in a sec.  To the other poster, the "pill" I"m refering to is meclizine.  It is in the form of Dramamine Less Drowsy (NOT regular Dramamine).  It's also the active ingredient in "antivert".  It's basically a antihistamine, but has really helped me out.  I only take 25 mg.  However, after 6-7 hours I start getting very tired and a bit antisocial.  Not sleeping, per se, I just don't want to participate, converse.  I really hate that.  50 mg (2 tablets) knocks me out.

Anyway, went my neurodoc over a week ago.  He told me vestibular exercise wouldn't help me because i don't have a daily dizziness, disequilibrium problem...just pops up whenever and then goes away.  Plus, it's the nystagnus that is the debiliating issue, and exercise will not work for that when I'm in an "attack".  He gave me a prescrip of 5mg tablets of valium.  To use as I feel I need to.  I took one the other day when the wonky head started, I didn't go into nystagnus.  However, the wonky head didn't go away until about 9 hours later BUT....I didn't feel tired on antisocial like i do with dramamine.  I'm interested to see if it will stop a nystagnus attack.  He also gave me a prescript to steriods to use in an emergency. 

He also told me that balancing tests can't really tell if the nerve is a percentage dead or not...the test just tells how it differs from the other side. He told me they did the test when I first came in a almost 3 years ago and my AN side was working at 25% capacity of the other side.  I imagine it's lower now.

But so far no nystagnus in almost 3 weeks and my disquilibrium and wonkiheadness have been great.  Tisha

[Tumbleweed]

Hi, Tisha:

You're getting into that period after CK treatment (after one year) when it seems most people start to feel better. You may have some other bumpy periods, but I expect you're going to have mostly relatively smooth sailing from here on. Of course, it's a big crap shoot. But the odds are in your favor!

I'm glad you're feeling better!

Sincerely,
TW

[Tisha]

Thanks Tumbleweed.  The only other discouraging bit of news is that my hearing in the conversational tones has dipped.  My audiologist said that i might consider...not anything urgent, in wearing a hearing aid in my AN ear.  i was really really bummed to see the decrease.  My other ear is horrible, wearing a hearing aid in that for several years.  You're right...it really is all a crapshoot.  I just have to realize that as we age, the body just falls apart!  Nothing can be done about it.  Tisha