Wonky Head

[Catflower]

All of you veterans know what I mean when I say wonky head.  After 19 months mine isn't getting any better.  I find it nearly impossible to function in shopping situations like the Mall or Walmart.  I was so hoping this was going to improve.

Linda

[HeadCase2]

Hi Linda,
  Sorry to hear you still have wonky-head.  Have you tried Vestibular Retraining by a Physical Therapist who is familiar with it?  Many have found that helpful.  Ask your treatment team who they recommend.
Regards,
  Rob

[wendysig]

Hi Linda,
Although my wonky headedness has improved, it is not completely gone and affects me especially in situations like going to the mall or being in a crowd of any sort.  I notice this when I walk outside too, but since it is so open, while I notice the bouncing vision thing, it is not as bad as the mall or a crowd.   My doc suggested looking straight ahead and fixing my gaze on a stationary object and shifting it  to something else as I get closer to it.  It is not an easy thing to do, because is is just not something that comes naturally and because you can't windowshop as you walk.  Trying to carry on a conversation while you're walking is harder too, because you can't look at the person you're with.  I wil tell you this though -- it does help.  Another thing that I find helps me is holding onto someone's arm.  I thinik this happens because it's kind of the same thing as holding onto something when your dizzy, it stabilizes your sense of balance.  Also, since I'm not paying as much attention to what is going on around me as much as I used to, I hold my pocketbook much closer and more tightly.  I'm nobody's victim and don't intend to be.

Best wishes,
Wendy

[Catflower]

Wendy:  Thanks for the advice.  I'll definitely give it a try.  It's good to hear from someone who knows exactly what I'm talking about.

Linda

[LADavid]

Hi Linda

I'm coming up on my first year anniversary and I'm still a wonky-head.  And I'm in vestibular rehab.  It's the visual stimulation that does it.  Around the house it isn't bad.  But once I'm outside with a lot of things moving around me, I'm a mess.  I don't have any suggestions -- just empathy.

David

[wendysig]

 It's the visual stimulation that does it.  Around the house it isn't bad.  But once I'm outside with a lot of things moving around me, I'm a mess.

Hi David -

I think you hit the nail right on the head - that is exactly what I've always thought and what I said to my doc.  His suggestion does help outside too and he said eventually this sensation should get better or go away altogether.  According to him the key is to stay active and not avoid situations that cause the problem -- the more you deal with it, the better you will retrain your brain.  If you think about it, it makes sense.  I suppose there is a chance it will never get completely better but if you try what he suggested, it may help things improve, I think it has helped me, or at least helped me cope with this particular problem.

Best wishes,
Wendy

[cin605]

its really driving me batty!I started vest.rehab last week.some times i just get so frustrated.Yesterday went for a massage got nails done eyebrows haircut french manicure.Came out of spa wobbleing dow the street first day out when its been windy couldn't see
squat!got home & bawled my eyes out...first good cry since surgury..part of recoup i hope.

[bltfollis]

i dont know who came up with the term " wonky head" but it really is the best description, when i first heard it called that  i said to my wife thats how my head feels in the supermarket" wonky " that word still makes me laugh!!!, oh yeah by the way it does get better the more you go to the market or mall, i purposely make many small trips to the market jjust for that reason, it also seems better if your looking directly left or directly right  therers too much stimulation looking straight down the aisle especially if the market has very high ceilings.


 bill

[leapyrtwins]

Catflower -

I only suffer from wonkyhead when I'm extremely tired, but IMO the advice Wendy gave you is definitely the way to go.  It's what I've done since I was post op and it works wonders.  I also did vestibular exercises both pre and post op and they helped me a lot. 

If you find Wendy's suggestions don't work for you, you should ask your doctor about physical therapy.  It's just my opinion, and I know everyone is different, but nineteen months seems like a long time to still have wonky head on a regular basis.

Good luck,

Jan

[Dog Lover]

Cheri

Yep. I agree with you, although I had more problems with malls and such over being outside. But yes - the more you do it, the better it gets. I still force myself to do things that challenge me. When I feel a tinge of wonky headedness, I know that I'm challenging something that needs to be worked on. I just take it in small steps now, since I've normally been feeling pretty good. I even went to the mall on Black Friday. No wonky head, but still just a tinge of a challenge.

I'm hoping to be able to get back to my mini-trampoline at some point. But not yet!

Cathy

[LADavid]

Cheri
In answer to your question about PT.  My balance has improved some since May when I started, but the wonkeyhead days are still here.  It takes a real concentrated effort to manuever my way through the outside world.  But there is something to be said for getting out often.  I've noticed that since I moved at the beginning of November -- my wonky-head days are more frequent and difficult.  It may have something to do with spending so much time in my new place unpacking and getting organized.  There are days at a time when I leave my place only to go downstairs to get the mail -- or a paper like today.  It is really hard to put things into perspective since I can't seem to find a cause and effect.  It's good day today, bad day tomorrow.  Unfortunately, as far as I know, the medical community really doesn't get this.  Theresa England my physical therapist at least acknowledges it.  She has heard this issue frequently from her patients.  Some describe it as waterballoon head.  Others have said it takes every bit of effort to walk from one place to another and most of the time they just want to give up and sit down.  I'm still looking for an answer.

David

[highlife]

I'm in the Watch and Wait group, but my biggest problem is wonkiness, or bobbleheadedness.  I still have really good hearing, although that's in a sound booth.  I have lots of pressure in my ear, feels like a tennis ball in there.  The surgeon said about 60-70 chance of losing my hearing and that the feeling of ear pressure would not improve much.  He said my balance and vertigo would be worse immediately after surgery and then hopefully get back to where I am now.  Is that about what you all have experienced?
Steph

[LADavid]

Actually Steph, I was much better immediately after surgery.  I was cruising the hospital halls without effort.  There was a balance issue once I got home. But the wonky-headedness didn't come until a  month later.  I still don't get it.  I wish the medical community would address this issue.  But it doesn't seem to be a big enough deal to them.  After a year of it, it's the one thing that truly annoys me.  Don't shove it off like it's no big deal -- it is to me.  Excuse me for being cynical, but it seems that -- at least from my experience -- doctors are good at getting the thing out -- but really are disgusting when it comes to dealing with the aftermath.  My apologies, but I am really getting tired of this with no answers.  Heck, there probably isn't enough money in it to find solutions.

David, the honest cynic

[highlife]

David:
The surgeon I saw was too cavellier about the results to me, like when he said if I lost my hearing then it would be no problem, we'd just do the translab.  No problem for whom?
I'm pretty inspired by the folks who are really working on their balance issues and vertigo, since these are my biggest issues right now.  I would have tried the middle fossa approach to try to save my hearing, but the doc said he wouldn't recommend that because I have a seizure disorder, even if it well controlled.  I feel that he was very straight with me about the possible risks of surgery or gamma knife, but didn't want to discuss the ramifications for me or my life.  In fact, nobody mentioned my life.
Sorry you are not feeling better.  The sensations in the head are really distracting.
Steph

[wcrimi]

Could someone describe this feeling a little better?

I am 3 1/2 weeks into my recovery and my general balance itself is improving, but I do have a feeling that's sort of combination of dizziness, feeling like a just woke up and need a cup of coffee, and being slightly off balance that I get when I'm in motion.  When I'm sitting at the computer or watching TV, I don't notice it much. But when I get up and walk around or go outside for a walk, it becomes much more noticeable. Is this what you are talking about or the sensation more extreme?