Does anyone NOT have wonky head????

[lawmama]

How bad was it initially?

- Pretty bad.  I was never sick because of my wonky head, but it was very uncomfortable.  It was difficult to walk at first.

How long did it take to go away?

- Slowly, and still not 100%.  When I am very tired I notice it the most.  At this point, most of the time it isn't so much 'wonky head' as it is just a feeling of being off balance.

Did you do any PT or other activities that you believe helped?

-  Not really.  I used the Wii Fit balance games and I really liked those.  Mostly just getting back to life and my normal routine forced me to compensate.

Do you still have occasional days where it returns?

-  A little.  Like I said, when I am very tired or if I have congestion I notice it.

Anything else significant to add?   

-  Honestly, it is the new 'normal' for me already.  I  am only 6 months post-op, but I have already adjusted.  Would I rather be back to my old self?  Sure.  But I am grateful for my outcome and I try to focus on all of the good.  I will have a long and healthy life and if I am a little wobblier than I was a few years ago, so be it.

[kzanana]

My surgery was 11/25/08 and I have the wonky head and much worse, still     My right side balance nerve was removed with the tumor but the left side has not compensated and never will, I'm told. They do not know what happened or why. I walk with a cane at all times or would fall over.I liken it to being sea sick all the time. I can live with the balance problems but it's the pain I still have in the head that is my concern. If I have learned one thing on this forum it is that No one is the same. Sneezing it like throwing a grenade inside my head

[CHD63]

Kathy .....

ANs are technically vestibular schwannomas (see http://en.wikipedia.org/wiki/Vestibular_schwannoma) that begin growing when the cells of the outside covering of the vestibular (balance) nerve begin to multiply into a tumor.  Since the nerve is inside the tumor then, the nerve has to come out to completely remove the tumor.  Even if you have radiation therapy for treatment, the vestibular nerve is usually damaged from the tumor.  As you have stated, normally the vestibular nerve on the non-AN side takes over when the AN side one is removed.   

It sounds like your non-AN side vestibular nerve is not taking over.  However, all is not lost since we have three systems to help us maintain balance:  vestibular nerves, vision, and sensory-neuro (muscles, nerves, etc. in our legs giving our brains the necessary feedback).  The issue now is for you to strengthen your visual and sensory-neural responses.

I have no functioning vestibular nerves due to brain surgeries on both sides.  After the second surgery (the AN removal), I was sent to a trained vestibular therapist (quite different from a physical therapist) and spent many months working with him, as well as doing a home program.  Initially after surgery I used a walker, graduated to a cane or someone's arm, then finally on my own power.  My surgery was two years ago last February and I am aware of my balance issues when walking most of the time, but I have learned to instinctively maintain my focus on a stable object when walking.  I always try to stay to the wall side of a room, or at least near something solid to grab, if needed.  My friends and family all joke with me about my swagger and are watchful if I seem unsteadier than usual.  I have learned to ask for assistance if I need to walk outside after dark.  Interestingly, I have no problem driving in the dark ..... just walking.    Overall, it does not majorly change my lifestyle, at this point.

You mentioned being sent to a Balance Center, so I hope that means you have had therapy with a trained vestibular therapist.  Initially I went to a physical therapist with vestibular training and there was a world of difference between the approaches of the two.  The vestibular therapist did all the things I needed to strengthen me, as well as enable me to regain my confidence.

Although I am a retired teacher, I feel like I am physically strong enough that I could go back now.

Best thoughts.  PM me if you have any other questions.

Clarice

[CF]

Hey CF,
can you tell me if the indo board is more?  or less? challenging than the half ball ( the ones you see at gyms with a flat side and a ball side?

If I'm thinking of the same thing you are referring to, I think the Indo boards are a bit more difficult because the roller underneath can slip out from underneath you. Well the one I have at least, it's a Lowes special! I bought some of that plastic / PVC tubing and simply use a wooden board on top of it. Total cost like $5. Check out youtube to see how they're used and how to build one yourself. If you buy an Indo board, the cheapest set on ebay is around $80. Most of these have have the ends built out to prevent the roller from sliding out from underneath you. I should have put those "end borders" on the bottom of my homemade Indo board. I believe the half ball tool is rubber on the bottom and you can tilt, but I don't it can slip off from underneath you?

Check out this clip

http://www.youtube.com/watch?v=tuEx3GSSqGo

[james e]

I had my surgery 2 months ago, and I am still very wonky headed. I can drive, but have to be very careful because the turning of my head back and forth really is difficult. I can walk, but stagger back and forth at times. Walking in the dark is all but impossible. I have had 2 PT sessions and it is way  to early for it to have had impact on me. I am NF2, and do not know if that is adding to my problem or not. The remaining tumor is small and may not have any impact yet, but I think some people have very small tumors that cause wonkyness...is that a word? I am 61 years old and install shutters, and work from ladders and have applied for social security disability because it is too dangerous to be on a ladder any more. I have found that I spend so much mental effort to balance myself, that it detracts from anything else I try to do. It is like talking on the phone and driving...there is some overlapping function in your brain that should be driving, but it is talking on the phone...then the accident happens...I should have been driving rather than talking on the phone. When I get really wonky, it is hard for me  to listen to people talk, think, or do anything. Do any of you have problems like your brain is so busy balancing that  you have problems doing other things?

[Syl]

James:

Our post-surgery recovery is a long one. 2 months is really recent. You will continue to see improvement althought it will be slower as time goes by. I'm 2 yrs post-op and continue to see improvements. Just 2 months ago I stopped using night lights throughout my house. I have a better sense of which way is up in the dark now.

Just saw my ENT this week & he stressed the importance of continuing with my vestibular exercises. The wonky head doesn't go away on its own. We must be proactive as the brain continues to adjust.

Wonkyness is a work around the forum.

Syl

[wcrimi]

James,

I have to agree with Syl.

It may seem a bit discouraging to hear that the recovery is so slow, but I am about 17 months post op and feel like I reached a new peak this week. Every once in awhile you'll take a small step forward. I think the harder I work on balance activities the better I feel.

Wayne

[Patrick-OC]

How bad was it initially?

- Bad.  The first week was the worst.

How long did it take to go away?

- It never went away. I am 14 months post-op and still have the same degree of weirdness. My balance never shifted properly either. My balance nerve was cut during surgery. I don't need a cane during the day on flat surfaces. I usually have someone with me when i walk in a field or uneven surface. Night is very bad. I cannot do much without sufficient lighting. It's sort of like my eyes cannot keep up with the motion of my head. The doctors have diagnosed me with "Chronic Vestibular Deficiency". That was the term they used since they can't call it "Oscillopsia" since only one ear was affected.

Did you do any PT or other activities that you believe helped?

-  I did PT and Vestibular exercises for months. When I went back to work, I could still not stand on the ball thingy without someone holding me. It seems that when there is a lot of activity or it is a narrow passage, I have problems more than if I am walking through an open area. Malls, narrow hallways, yuk!

Do you still have occasional days where it returns?

-  I have this every day and the doctors say it is something I will just have to get used to.

Anything else significant to add?   

-  This is my new normal. I have to deal with continued balance issues and some vision issues. I look at it this way... Things could have been a whole lot worse so if this is all I have to deal with, then I can live with it. God has taken care of me so far and He will help me with this. It's a new day and I have had my one year MRI and it showed nothing there (but there is a brain). I went back to work too early. Take your time and get as well as you can before trying to get back to a "normal" life. Time takes time.

[Kansas]

 What is a "wonky head?' --newby

If you had wonky head post surgery but it later subsided and you now feel mostly normal, please describe your experiences here.

How bad was it initially?

How long did it take to go away?

Did you do any PT or other activities that you believe helped?

Do you still have occasional days where it returns?

Anything else significant to add?   

[CHD63]

It is that feeling of disorientation or disequilibrium ..... when you cannot figure out up from down ...... not the same as true vertigo or dizziness where things are whirling around.

Deb, were you the one who coined the term?  Whoever did, the word wonkyhead sure fits.

Clarice

[ppearl214]

It is that feeling of disorientation or disequilibrium ..... when you cannot figure out up from down ...... not the same as true vertigo or dizziness where things are whirling around.

Deb, were you the one who coined the term?  Whoever did, the word wonkyhead sure fits.

Clarice

Capt Deb did coin the term "wonky head" (I coined the term "brain booger" for an AN).... and Clarice  is on the money.  I tend to describe it as taking cold meds, having the head "disconnect" feel with a hint of dizziness tossed in for good measure.

Phyl