why is my head wonky NOW?

[MAlegant]

Hi all,
Anyone care to guess why I'm having dizziness/wonky head now if I haven't had any balance problems (mostly) and I'm over 6 months post-op?  I will call the doctor if it persists but I'm curious if anyone has had this at this late date in recovery. 
Thanks,
Marci

[Pooter]

From what I've seen, it can be directly affected with weather patterns/changes..  Also, if for some reason your neck muscles are weaker than normal (need a massage?).. that seems to affect it as well.  That's from my experience, anyhow..

Regards,
Brian

[MAlegant]

Well, the weather definitely sucks so why shouldn't my head feel rotten too?  So Brian, are you offering a massage??     (I've been getting them weekly and they do help.)

[Pooter]

Haha.. One of the things that Jenni admittedly missed during my recovery is having me massage her back/neck and feet.  I've finally gotten back to it.  What's funny is the year leading up to my diagnosis, I got regular massages because my back and neck were so tight.  After surgery, I haven't felt the need as bad.  I still do, had one the other day, but not as bad..

How's that for a political non-answer to your question? 

Regards,
Brian

[Syl]

Marci:

Did your wonky-headedness ever go away? Or have you felt it all along?

I'm almost 8 mos post-op and my wonky-headedness has never really gone away. It seems to diminish as time goes by, but when I'm tired it gets worse. I was sick with a cold/flu over the holidays. The excrutiatingly painful sneezing and coughing left my neck feeling weaker--it was a major setback for me. I agree with Brian about a weak neck aggravating the wonky head. 

Though I've been over the cold/flu for weeks now, just yesterday I felt like the effects of the cold/ful on my neck and head are diminishing. My neck is feeling better and the wonky-headedness is diminishing back to pre-holiday levels.

Syl

[MAlegant]

Hey Syl,
I've never really had the wonky head thing except for once in a while.  (They left my vestibular nerve intact.)  That's why it's so surprising to have it happen now.
Best,
Marci

And Brian, your answer was just so smooth....

[cherrypiper]

well lets see. i have seen a few answers here and a few more questions  on this so here's mine.

I'm 14 months post and yes the balance issue for me will never get better. although my ENT says it is much better then 2 months post op.

mine is always worse  in the evening. i lean to the left , away from my AN side, as Dr. explained i have no balance center on the right side now, so as i get more tired physically so does my brain. and it over compensates and i "lean" left as i walk and as i drive too.

the sinus stuff , for me, is worse with the post op too. some days here in Texas when a cold front rolls threw it can be very hurtful.

will it improve ? who knows . what i DO know is the tumor is gone. and all else is minor irritations to that one........

[LADavid]

Hi Marci

At a year and 3 months, I still have wonky-headedness.  The day of the symphony, both Lainie and I were commenting to each other on how bad it was for both of us.  Mine comes and goes -- but I would say that it's there 70% of the time.  I started to notice mine about one or two months after surgery.  I asked my PT about it and she said that for some people it just takes a lot of time to get re-adjusted.  I still don't have any real good answers yet.  Sorry it's getting bad for you.

David

[Captain Deb]

It takes a long time for wonkyhead to go away, but somehow, our bodies/heads do adjust or over time we just forget what "normal" felt like and just get on with it.  I hardly notice it anymore even in a noisy crowded situation.  In a noisy crowded situation I'm usually having a good time and grateful not to be in bed with a headache! (Except at Wal-mart)

 At 6 years post-op the Dreaded Wonkyhead  doesn't bother me much and it won't bother you either then if you just stay active, eat healthy, keep walking. I try to do all these things despite the headaches that kicked in about 4 months post-op. The brain continues to seek homeostasis years after surgery.

Keep on healin'!!!

Capt Deb

[Captain Deb]

Marci, you had a facial neuroma and not an AN am I right (posting on a Blackberry and can't view sig lines) So that would be why the doc left your vestibular nerve intact. It sounds like the vestibular nerve on that side is getting misinformation which is why in AN sugeries the vestibular nerve is severed-better no input than garbled input from a tumor-damaged nerve.  I would put a call in to your docs for more information on what you can do for this. There is a treatment with Gentamyacin which disables the vestibular nerve so as to disrupt the garbled signals to the brain which allows the other side to compensate, but that is for a doc to determine and they usually use that as a "last resort" treatment.

Capt Deb   

[Pembo]

Feeling any better today?

[MAlegant]

Thanks all, for the responses.  Pembo, yes, today is better, by a lot.  Coffee sometime??
Marci