Balance Nerve Confusion!

[karith]

Apparently there is no "norm" to the balance experiences. 

After reading these posts I am partly encouraged and partly disheartened.  I am almost 3 months post surgery and getting impatient with the wonky head feelings and how they limit my ability to do some of the activities I used to do, especially alone.  My doctor said it takes about 18 months for the balance system to rehabilitate to whatever degree it can, and that's about the end of it.  (Not an exact quote.)  So now I have my fingers crossed about those end results.  I practice daily, especially the things that bother me most (turning the head while walking, for example, or other similar head movements) and some days think there is improvement only to have another day seem worse.  Most of all, I'm tired of the CONSCIOUS effort to move safely and relish moments when my head can be still so it feels normal!  Hopefully, I'll get used to whatever it is I have to get used to, eventually:)

[Vivian B.]

Thank you everybody for replying. I guess we all have similar issues to deal with. Thanks for all your input.

Vivian

[CHD63]

Just want to respond to "karith"s post.  I am 16 months out from surgery for a L side AN.  Just within the past couple of months do I feel like I feel secure to walk outdoors alone (I have done it for months ..... just did not feel secure about it).  Not sure I will ever feel secure walking alone outside in the dark.

I had my final visit with my vestibular therapist yesterday and since both of my vestibular nerves were affected (2 different surgeries) he cautioned me to always be very cautious on uneven surfaces in the dark.  His advice was to carry a flashlight with me if I needed to be outside after dark ..... have not tried that yet.  He also said that I could begin tapering off the daily exercises, but to resume them if I began feeling insecure again.  If I have to get up in the night I am OK since we have many night lights throughout the house at home.  However, when I am away from home, I keep my cell phone beside the bed and it lights up like a flashlight, which is sufficient to see.

"karith" you will find that you will gradually have less and less wonky head feelings ..... the progress is so slow sometimes that you need to look back farther to see how far you have come.  Hang in there, it will get better!!

Clarice

[Vivian B.]

Hi Clarice

Just out of curiosity, what are vestibular exercises and do they really help ?

Vivian

[leapyrtwins]

Vivian -

Vestibular exercises are great and they really do help.

My neurotologist had me doing them both pre and post op - and IMO it made all the difference in the world.

I still have a copy of the ones I did; if you'd like I can send them to you.

Karith -

while everyone is different, my balance was pretty much back to normal long before 18 months.   I'm certain though, that at 3 months post op, my balance was much like you describe yours, so things will get better.  Are you doing exercises on your own? or working with a PT?

Jan

[CHD63]

Vivian .....

As Jan said there are many different exercises vestibular therapists use, depending upon the patient's particular deficits/needs.  Any of the exercises are valuable for most people with balance issues.  The important thing is to do them in a safe environment:  corner of kitchen cabinets, hallway, or with a spotter, etc.  A quick google shows many sites for exercises ..... a couple of them:  http://www.goldbaum.net/balance/Vestibular_Therapy.html     http://www.dizziness-and-balance.com/treatment/rehab.html (excellent!)     http://www.dinagoldin.com/anarchive/exercises.htm

In the process of looking up about exercises, I came across this excellent site for information on acoustic neuromas, treatment options, etc.:  http://www.dizziness-and-balance.com/disorders/tumors/acoustic_neuroma.htm

As for helping ..... yes, they definitely did.  In fact I can already tell if I skip a couple of days and do not do them, my wonkyheadedness is worse.  It is a small price to pay (doing the exercises) for the feeling of security.

Clarice

[Vivian B.]

Thank you Clarice, Jan and Kerith. I will look up the link you sent me Clarice and I will start to dome exercices. Hopefully, it will enchance my balance which is not too bad , but I fiind I can't turn my head, I prefer to turn my body if I want to look behind me. Also when I am walking, I can't look downn or up, basically, I find that I am better off keeping my head straight and without too much movement.

Thanks again

Vivian

[CHD63]

Vivian .....

What you are describing is very typical of those of us with significant balance issues ..... turning whole body instead of head.

One of the best exercises I have done for that is very simple.  I have a relatively long hallway from my living room to the last bedroom, which is very safe because of the walls/doors on both sides.  I walk as quickly as I can (without banging into the walls) up and back 10 round trips, moving my head as quickly as I can from side to side.  Then doing it again but moving my head up and down.  At first I could only walk relatively slowly, move my head slowly, and not turn it very far.  I have progressed to walking quite rapidly and moving my head much faster and farther.  When I skip doing this several days in a row, the wonkyheadedness begins to come back.  Doing this exercise is a small price to pay for stability ...... and besides it burns calories in a safe way!

Clarice

[karith]

Thanks, Jan.  Good to know.  I'm currently doing exercises on my own but am thinking of finding a PT to work with.  I also think working at my small cubicle during the day is seriously limiting my visual realm/input and need to figure out ways to deal with that. 

Clarice - thanks for the links. I'm going to print out some exercises I can do at my cubicle and pin them up to remind me. 

Some days are better than others.  I keep reminding myself how much improvement there is since the surgery and that the remaining improvements will naturally come more slowly.  That's a GOOD thing:)

Back to work!

[stoneaxe]

I had radiosurgery in 2004. With a partially functioning vestibular nerve as a result I was experiencing significant dizziness and vertigo. I'm very happy to say that after my surgery (just 4 weeks ago) my balance has improved. The complete removal of the nerve has seen a big improvement over the partially functioning nerve.

My experience with vestibular exercises pre-surgery were marginal. It wasn't until I started pushing myself far beyond the normal that I made good progress. It's maddening that everyone's results are so different. It would be great to be able to say do X and Y will be the result but we are all so different.

Bob

[CHD63]

Bob .....

I didn't take time to look up the reference, but it is my understanding that a poorly functioning vestibular nerve is worse than a non-functioning one ..... meaning the poorly functioning one is sending erratic, mixed signals to the brain and the brain does not know what to do with it ...... hence the vertigo, wobbliness, wonkyheadedness, etc. persists in spite of exercises.  This is why they normally remove the vestibular nerve during AN surgery ..... then the brain quickly learns to use only the remaining good nerve on the other side.  Except for NF2ers or people like me with no good vestibular nerve.

I do know that the more aggressive one is on rehab of any kind, be it exercises or paddleboarding, the more quickly the brain adjusts.  Congrats on a job well done!

Clarice

[wcrimi]

One thing I have taken away from all the conervsations I've had on these message boards is that the return to fairly good balance takes a lot longer than the 6 months quoted in some of the articles on the internet.  It's fairly obvious that MOST of us have wonky head issues FAR beyond that. In fact, it's hard to find a case where it didn't extend beyond 6 months or even a couple of years.  What I think would really help is if we had some cases of wonky head subsiding after 1 or 2 years to demonstrate it can. Mine is improving and hopefully will continue to improve at just over 8 months post surgery. But at the rate it's improving, there's no way I will feel mostly normal before another 3-4 months and that may just be the optimist in me talking.  I really think we need some more education on wonky head expectations.