Does anyone NOT have wonky head????

[juliec]

I call it feeling "floaty." For me it's like you described with waves in my head making me disoriented. I had it before and after surgery.

1. How bad was it initially?  Pretty bad, although I was able to walk down the hall in the hospital a few days after surgery just lightly touching the walls when needed. Came home after day 5 and did walks mostly unassisted, but with family members near just in case.

2. How long did it take to go away?  I had surgery 6 weeks ago and have been driving for 3 weeks, working for 2 weeks. It's mostly good, but occasionally pops up when I turn.

3. Did you do any PT or other activities that you believe helped?  I walked lots and lots.

4. Do you still have occasional days where it returns?  I wouldn't say I have days where it returns, more like moments when it returns.

5. Anything else significant to add?   I had head, neck, and facial massages which have helped my headaches tremendously (thanks for the suggestion, Cathy!). I wonder if having a headache adds to wonky head?

[daria]

. How bad was it initially? Initially it was very,very bad especially if I moved my head to one side or got up from sitting or lying down.

2. How long did it take to go away? It took about a year and a half to get to a point where I felt more like I had pre-surgery.

3. Did you do any PT or other activities that you believe helped?
Once I started balance exercises, the change was pretty immediate. I have since worked some sort of balance exercise into every day even if it's 10 minutes.

4. Do you still have occasional days where it returns?
Yes, but not nearly as bad.

5. Anything else significant to add? At least this can help the next group of pre-op people.

[stoneaxe]

Update

14 weeks post-op I'm pretty much wonky head free. Only when I get a head cold do I feel it and sometimes I get a brief touch going from light to dark.

[cecile k]

I'm nearly 8 years post op and still have bouts of this wonky head stuff, especially if I don't get my required 8 to 9 hours of sleep at night. It took a number of years for me to be rid of the worst of the wonky head feeling, probably mainly due to the fact that I had serious headache issues and deal with screaming tinnitus on the deaf side.

To keep rid of the wonky head feeling, I try and go for a 30 minute 'power walk' daily and get enough sleep. I truly wish I had kept a journal and would encourage anyone new to this forum to keep a journal....I forget a lot of the details of exactly how I felt.

Cecile

[wcrimi]

Keeping a journal is a great idea.  I kept one for the first few months. Then I sort of let it slip as the improvements started coming much slower.

[4cm in Pacific Northwest]

1) How bad was it initially?
It was horrendous right after surgery. Could not stand up. Vomiting. CSF leaks. 2 weeks post op I Slowly progressed from wheelchair to walker

2) How long did it take to go away?
Week 4 nixed the walker
Month 1-2 had issues turning corners when walking. Uneven ground had me very weird and disoriented.
Month 6 riding a bike- no problem

3) Did you do any PT or other activities that you believe helped?
This was my thread/ post
http://anausa.org/forum/index.php?topic=5584.0

I feel it is imperative that I exercise every day for a minimum of 20 minutes (good heart rate stuff.) I power walk hills. I practice dance turns on the grass- at home. I feel if I do not use it- I loose it.

4) Do you still have occasional days where it returns?
YUP! Wonky head for me is worse when there are extreme rises and drops in barometric pressure. 

5) Anything else significant to add?   
I can have totally wonky-head-free-days however the days that it is the worse I am either very tired (not enough regular sleep), I am stressed… or a there is a steady barometric pressure change.

One of the vicious cycles I can get into is if I am tired but too busy to nap and/or rest (I drive kids everywhere…) I tend to grab a latte. If I have too much caffeine then I get in a vicious cycle of reduced needed sleep… Then I am wonky so I grab another cup of java to perk myself up… and the cycle starts…

I try to grab a minimum 20 minutes rest time a day to sit quietly in a resting position- even if this is in the family van while one of the kids is at practice or rehearsal. The key is stop and put my feet up… otherwise I don’t have enough stamina and get wonky head… The best investment I made, this year, was to buy a folding camp chair that has a footrest. While still being there at my child’s soccer practice I can rest and put my feet up. During the nice weather, while my kids are in rehearsal, I take my chair to a quiet park and read a book- this does wonders to prevent wonky head. For me anyway it is all about pacing oneself… as the best wonky head prevention technique.

DHM

[ernie h]

i'm a little more than two years post op. my balance is better but my wonky head is not.somedays better than others but for the most part it's always there.

[stoneaxe]

I've begun to notice that while my wonky head is gone my balance still goes off for brief moments.

[AMD]

Happy to report that I do NOT have wonky head.   

My balance was never that bad after surgery, as the balance portion of my nerve was pretty much destroyed by the time I was diagnosed.  I had many years for my body to compensate.  I was a bit unsteady, but never required a cane or walker, and pretty much just took it a little slow and made sure there was something nearby to grab onto if I needed to (furniture, walls, small children, etc.).  I'd say by 2 months, my balance was to the point where I was the only one who noticed my little "bobbles".

I did have more of an issue getting used to the SSD and that gave me sort of a spaced-out feeling at times, but I think that was more a matter of my brain learning how to filter out noises and my one good ear getting used to doing all the work.  It took about a year for that to go away.

I had some exercises given to me by PT in the hospital, but since I am a PT, I just tried to incorporate those things into my usual routine - walking on uneven surfaces by going to my daughter's soccer practices, walking while turning my head at the grocery store, etc.  Pretty much whatever movements were challenging for me, I just tried to do those until they got easier.

I'd say I feel normal now - there are days when I get really tired or have a cold or something that I feel a bit wonky headed, but I don't think it's nearly as bad as true wonky head.  (Do you think they'll add that diagnosis to the medical dictionary?)

Lori

That pretty much sums up my experience too.  Thanks, Lori

-Amy

[TxNurseNoelle]

Hi everyone, its been awhile since I posted anything. I am still experiencing balance issues where my eyes and brain are not coordinating at least thats how I describe it. i am almost 3 months post-op translab surgery 2.5 + tumor in the CPA I am SSD rt side with terrible tinnitus that competes with noise in a room and seems to get louder. I am experiencing headaches almost daily and am on new medications hopefully to put that at ease. I am using a cane to help steady myself it seems things whirl around not vertigo but cant focus when I am out and about. I drive but short distances and dont experience it unless I need to turn my head fast so I take the long way around to pick up my dtr to avoid quick head turns. and even if I am at the computer to long I experience it also but especially when i am in motion. I had balance issues prior to surgery but feel it has worsened since the surgery. Am not back to work yet am hoping I can return soon. justed wanted to add my experience incase someone else can relate to this and know they are not alone. Noelle

[Goldie]

Just adding my two cents!  I had most of my balance issues early on and found that caffeine was a big factor for me.  I had read mention of it affecting balance somewhere and realized that my worst days were when I had taken a bunch of Excedrin or had a couple cans of Diet Coke.  I started avoiding caffeine as a trial and it helped immensely!  I don't think my doctor quite believed me when I told him this, but hey, whatever works!     I'm back to being able to tolerate some, but I still watch it.

Denise

[Seal]

1) How bad was it initially?   actually not bad at all.    I had already lost my balance and all hearing in that ear.   So post op was different and maybe even better.    Initial progress came quickly, and by the four or fifth week, I began to really feel good.

2) How long did it take to go away? ---   I would say that I still have it now at 6 months.    My general balance is good, and I can function on the pitching deck while fishing, and i  even windsurfed this summer.    Of course these are both activities that I've done all my life and the body remembers well.    However, I continue to have trouble with turning the head quickly while walking, bending over to pick up something, or moving and turning the head at the same time.  I tend to stumble and almost fall down at times.   Its more pronounced when I am tired which is often these days.    But when I do get my sleep, things are pretty good.    Those stumbling moments though are pretty rare, maybe once or twice a day under the right circumstances.


3) Did you do any PT or other activities that you believe helped?  ---- I'm considering yoga this winter to help focus more on balance.   I will also walk as much as I can as well as maybe even jog a bit.    I still have a ways to go, and I look forward to continuing improvement based on others comments here.    There is also something called bonzu or bosu ball?   It is half a rubberball with the other half a flat board.   You stand on the board and just move back and forth balancing on the rubber ball side.    I'm going to try one this winter to hopefully accelerate the improvements to come.


4) Do you still have occasional days where it returns?----   mostly when I'm very stressed or very tired

5) Anything else significant to add?   ----- I had no facial paralysis at all, and I'm lucky that this is maybe one of the small problems that I need to overcome.   I wish my right side of my tongue and mouth would return to normal, but that nerve may have been damaged by the AN.    The extent of my wonky head I think is minor compared to others, probably because my body had already begun compensating for the squished nerve for quite sometime.   

[CF]

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?   

FYI had my retro op 2/11/10.

My wonky head I guess was pretty bad, compared to being non-wonky I guess. Bad enough that it has incapacitated me? No. I'm pretty much doing what I used to do (not as well, though), living WITH the wonkyness.

My brain has compensated, but the imbalance has not been eliminated. Lately, I'm guessing because of the weather and allergies, I feel my imbalance is just as strong as the day I came home. Good news is, I can deal with it, manage through it, go hiking, jogging, jump rope, lift weights, etc. But the imbalance (and wonky-head) still there. Compensation, but no elimination.

I did no PT (Doc said I didn't need it cuz I put on a good show of balance 3rd day after surgery), but I did Indo Board exercises before pre-op (big help!), then post op just did my best to resort to my prior exercise routines.


My Wonky-head has never left me. I have accepted it may always be there, and I will have to deal with it. If it goes away, then great!

When I first tried biking, I wiped out within 5 feet of getting on. What a great experience! But I got back right on it, and rode successfully. Now I'm doing a lot of hiking, 2-4 miles for 3 hours, up hills, rocks, etc. ...... wonky-headed and all ...... but I did it and will continue to do it. I like it, I like the challenge .... I was scared out of my wits crossing a river log (had to do all fours), but that's on my to do list. Practice walking across a log.

If you like challenges, then IMO you can view your wonky-ness as aonther challenge. The seemingly simple things done before offer a bit more challenge (or adventure is another way) .... that's how I am viewing it.

But ya, wonkyheadness is really annoying. I have almost forgotten what it was like to be normal ..... but I haven't yet, and this can bum me out sometimes. But I say push and move on ... safely and reasonably, but plateaus can only be broken, if you try to go and and break them.

[CF]

Actually, I haven't tried playing basketball yet. It's on my to-do list. I was a good player before. I'm curious to see how I will fair going against others. Will keep you posted.

[wcrimi]

Actually, I haven't tried playing basketball yet. It's on my to-do list. I was a good player before. I'm curious to see how I will fair going against others. Will keep you posted.

Basketball should be easy compared to some of the things you are trying.   I don't play competitively, but I get around the court very well and probably shoot better now than I did pre surgery because it has become a primary exercise for me.