Does anyone NOT have wonky head????

[wcrimi]

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]

1. How bad was it initially?

2. How long did it take to go away?

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

4. Do you still have occasional days where it returns?

5. Anything else significant to add?  

1.  Pretty bad ..... could not walk unassisted for nearly a week
2.  It is difficult to define "go away" ..... to no longer need a person, walker, or cane and resume all normal activities ...... probably close to 9 months
3.  I first had just balance focused physical therapy, then intensive vestibular therapy for about 10 months which helped greatly ...... still on modified home program, as needed
4.  I still have it almost every day but it does not frighten me any longer ..... it is definitely worse when I am tired or more tense
5.  Much of the wonkyheadedness for me was fear-based ..... I am still afraid of a bad fall (had several pre-op) but I have learned to greatly minimize the possibilities

I also might add that my situation is not typical (if there is such a thing!) since I have no vestibular function on either side.

Clarice

[Kaybo]

I have read about "wonky headedness" here over & over and thought about this a LOT.  I have horrible balance at times (mainly when I am tired) but I truly don't think I am wonky headed - I might have been but it has been so long that I don't think I feel that way now, if I ever did.  Of course, I don't have time to stop & think about it - I am full steam ahead!  Now the dizziness post-op was HORRIBLE (whole room spinning out of control for quite some time) and I had awful hot flashes too so I wasn't totally immune.  I did do some PT after 3 months - but that was really for the effects of the stroke (relearning to walk, write, pick up objects, etc.).  I did no BALANCE PT specifically.  I was young and even though I was overweight (& had been most of my life - not morbidly obese, just overweight), I was a PE teacher and VERY active - running some, walking, golf, competitive softball...I do think that helped

K

[Jim Scott]

Good questions...very relevant.

How bad was it initially?  Mild but noticeable.

How long did it take to go away?  About 3 months.

Did you do any PT or other activities that you believe helped?  Just a lot of walking, driving and other normal activities that involved head movement.

Do you still have occasional days where it returns?  Not really.

Anything else significant to add?   Yes.  While 'wonky head' is a very common after-effect of surgery (or radiation), as individuals, we each seem to have a slightly different experience.  There is no 'secret' to overcome this condition that I know of.  Exercise helps but time is usually the best healer.

Jim

[Syl]

How bad was it initially?  
Right after surgery I was extremely dizzy. I used a walker for about 2 days after leaving the hospital. Used a cane til about six weeks post-op because of the dizziness.

How long did it take to go away?
The initial dizziness subsided quickly as I graduated from a walker to a cane. After six weeks or so I hung up my cane and began driving. But I still had wonky-head at this point.

Did you do any PT or other activities that you believe helped?
I did get PT and walked around my neighborhood often. It helped my balance, but the dizziness remained the same.

Do you still have occasional days where it returns?
I thought my wonky head would never go away. It was with me ALL THE TIME. At around 10 months post-op, I was still wondering when I would feel better than I did before my surgery.

Anything else significant to add? 
I am 13 months post-op and feel really good. I feel better than I did before my surgery. I haven't felt this good in years. My head is clear. The wonky-headedness is pretty insignificant now. There are a couple of factors, other than time, which I suspect contributed to my improvement.

My work schedule changed from swing shift to a normal 9-5:30 schedule. This makes my sleep schedule easier to regulate. And having a normal sleep schedule is very important. We all know that when we are tired, the wonky head takes over.

The other factor is my headache treatment. I don't know for sure if this helped or not. But in February I began taking Pamelor for pain. For me, one of it's side-effects was extreme drowsiness, which affected me for about 7 weeks. Eventually my body got used to it, and when I emerged from this side-effect, the wonky-headedness began to subside. My head began to feel clear.
Now, at 13 months post-op, my head feels clear and free of the wonky-headedness most of the time. I was able to enjoy a 1-week vacation in Puerto Rico without any dizziness or wonky-headedness.
Right now I do have wonky head, but that's because I got home at 3am and didn't get any rest during my flight back from Puerto Rico.

Syl

[wcrimi]

Thanks for the responses.   

I hope this thread continues to grow. 

[lori67]

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

[stoneaxe]

I had it much worse post radiosurgery than I do now post surgery. I had significant problems for years and only was able to push it back with the standup paddleboarding.

Post surgery I was wonky for a week or so but quickly started seeing improvement. I'm 5 weeks post surgery and almost feel normal. I've also taken to incorporating the PT exercises into everyday life and of course pushing my need for balance to the extreme with standup paddleboarding. My balance is better today than it has been for 5 years

[tenai98]

I still have varying degrees of wonky head...My balance isnt to bad unless its a bad head day...To varying degees as well, I suffer from headaches on a daily basis...managable but annoying.
JO
PS I also get this "knot" in the middle of my forehead. Neurogsurgeon said he doesnt know what it is...It like a brain freeze without the pain intensity.  When this happens I become so focused on the knot that my peripheral vision is affected

[Dog Lover]

1. How bad was it initially? - It was pretty bad for me in the beginning, as my AN was so  small that it hadn't had any effect on my balance nerve. I never used a walker or a cane, but for the first week I walked outside holding onto a family member. I got around inside ok after a few days when I got home.

2. How long did it take to go away? I went back to work in the office at 8 weeks and it was much better, although still very difficult. To go away completely?? Hmmm...probably 9 months or so (give or take a month or so).

3. Did you do any PT or other activities that you believe helped? I went to one PT appointment. I did PT exercises at home for a few months. I constantly pushed myself. Did a lot of walking outside, in stores and eventually in the mall. The mall was the hardest and most exhausting. I bought a Wii and did the Wii Fit and eventually Dance Dance Revolution. Now that it's nice outside, I do a lot of yardwork, inside projects (painting rooms, etc) and still walk outside.

4. Do you still have occasional days where it returns? No, not anymore. The closest I can say that I come is that when I am VERY tired I feel just a tad off balance in my head and I know that if this was 4 months ago I woudln't have been feeling so good and would be wonky. I don't think that anyone else can tell that I feel that way, though.

5. Anything else significant to add?    I think keeping active keeps things in check and still helps me. At almost 1 year, I'm still seeing improvement. I feel pretty much back to normal again and I do everything I did before the surgery.

Cathy

[leapyrtwins]

I had wonky head post op.  It was pretty bad initially, but got better as the weeks went on.

My neurotologist had me doing vestibular exercises both pre and post op and they definitely helped.

I'm about 26 months post op and I still get wonky head occasionally when I'm overtired or stressed. 

Jan

[cin605]

I have it..n flaunt it!
Seriously....i get wonky head about every 5 days n it last for 3 i am not dizzy just heavy headed n off balance.
I have been doing vest. rehab/p/t  for about 9 months.
I feel i have come a long way from what i was but its still not pretty.

[wcrimi]

Thanks for all the replies so far.

The reason I created this thread was that I didn't expect this kind of exerience post surgery based on what my surgeons described and what I read elswhere. I expected to have balance issues, but wonky head is a little different (at least for me). It's like balance waves moving inside my head making me a bit disoriented and uncomfortable. It's not just being wobbly but totally clear headed.

Plus, since it seems to extend for quite a long time for so many of us, I thought we could use a place where some consolidated information could be shared for those of us that are worried we may never improve and for those that are about to have surgery.

I've been reading many of the individual discussions, but didn't find many encouarging stories of improvement or of people feeling almost normal even if their balance is not perfect.  To be honest, I don't think  I'll mind being a little wobby when I turn my head quickly or try to do something extreme. I just want to feel somewhat normal when I'm not. Right now, I only feel normal when I am sitting or lying down. Even standing is enough to trigger wonky head on most days.  I am improving though. No doubt about that. I'm glad to hear that others are also.  I guess we all improve at different rates, but it seems most of us are moving in the right direction and we do get better with time. 





 


 

[tenai98]

I know what u mean by balance being ok, even thou wonky head is present.  I have wonky head something like cin605. And when it comes it stays for several days.  My balance is only off when wonky head is bad.....but now for the last two weeks, I've been having headaches to the point where they wake me up during the night....Advil takes the edge off.
JO

[wcrimi]

Just wanted to thank everyone for the responses and to keep this thread alive so new patients will add to it over time.

I am still very curious because I think the average recovery time is a lot longer than generally believed.  I remember the surgeons I spoke to pre-op suggesting I would go back to work in 5-6 weeks (I did). I assumed that meant I would also feel pretty close to normal (not even close).  I also remember reading that at 6 months all that should be left is momentary loss of equilibrium when you turn your head quickly.

I am 10 1/2 months post op now and I've been showing some signs of significant improvement lately, but there is still a long way to go.  That does not seem to be too uncommon an experience.

I wish someone would do a statistical study on size of tumor, age, sex, general health, general activity level and recovery time for these balance and wonky head issues.  I feel certain that it would be possible to give patients massively better information if this was studied a little better. If I had the time and resources to do it and get unbiased information I would do it myself.