Wonky Head

[Cheryl R]

Welcome to wonky head world!        That's it.     I am sure it does vary in how it feels to each person. It is worse for some than others.         When it improves also varies from person to person.              Keep working on walking and should get better in time.
                                        Cheryl R

[wcrimi]

Thanks Cheryl.   

Does almost everyone get wonky head after surgery?    I don't recall reading about this in any of the post surgery symptoms documentation.

Is it reasonably likely to be somewhat better in another 2 weeks or so? 

I'm a little concerned about it because I can't imagine myself driving in my current condition (it would be like driving after a couple of drinks) , but I am scheduled to go back to work on 12/15 and really need to do so then or soon after because I'm not on disability/sick leave etc... and have no income right now.   

[wendysig]

Wayne,
I would also like to welcome you to the world of the wonky heads (or bobbleheads as my doc refers to them).  I basically have the same experience as you.  I feel fine as long as I am sitting, but when I go for a walk outside, to the mall or am in any crowd it is a very uncomfortable feeling.  Not really dizzy, slightly off balance and whatever I'm looking at doesn't look right.  It either looks like it is moving when it shouldn't be or bouncing slightly.  I also get a kind of weird feeling in my head that I have never found the right words to describe.  I don't have any problem driving or being a passenger in a car unless I'm driving (or riding)  around looking for a parking spot and that's not too bad either though.  My doc told me this would get better in time and it has improved a bit.  He also said that whatever challenges the vestibular system improves it.  His advice to me was to not avoid situations that are likely to make me feel like this and to stay active.  The more you expose yourself to whatever brings on the wonky-headed feeling the better you willl retrain your brain to deal with it -- it is unpleasant to be sure, but necessary.   As for being able to drive to work, I would say probably, but as you can see, this too is slightly different for each of us, so ony you will be able to answer that quetion.

David,
I'm so sorry you are still having problems after all this time.  I definitely do  think that there are issues post-op the docs need to know more about.  It seems that some are more on the ball than others, although I do have to agree that wonky head/bobble head is an issue that nothing I read about in any medical literature prepared me for.  I thank my lucky stars for all of you, who know what I'm talking about!   My doc didn't mention it to me until I mentioned it to him.  I don't think there is really anything else that can be done about it.  I guess you could be right and they just don't see it as a big deal.  That idea makes me wish they could spend a day or two in our wonky heads and see how they like it.  I hope vestibular rehab helps you.  It did make a difference for me to some degree.

Best wishes to all,
Wendy

[Captain Deb]

i dont know who came up with the term " wonky head" but it really is the best description


 bill

That would be yours truly! Me and my cousin Cam, who also had a brain tumor the same time as me--we would walk around the back yard together and call ourselves a "pair of wonkyheads." He's in heaven now and would really get a kick out of everyone using the word.

Capt Deb

[bltfollis]

thank you to capt deb and your cousin, it still makes me laugh it also makes my pt laugh when she asks me how i feel i tell her i gots the wonky head and you know what? she understands, unfortunate ly no one knows
 the feeling unless they have experienced it and the the only words to describe efeectively is "WONKY HEAD"

[wcrimi]

Does anyone have any experience with Wonky head where it actually goes away or lessens significantly or am I going to have to deal with this feeling permanently?

It's gettting a bit frustrating to feel unbalanced/dizzy/drunk all the time unless I'm sitting still or lying down watching TV. 

No improvement at all in the last couple of weeks in that area.

[Catflower]

Like David I also felt like I did better the few months after surgery, but lately the wonky head has been worse.  Primary care doc said I had a lot of fluid in my left (good) ear.  She had me on prednisone for 4 days and now I'm on Claritin & Sudafed together for two weeks.  I don't know if that will help or not.  The only thing I can say about combining those two drugs is it's a good way to supress your appetite

I'll be scheduling an appointment with ENT since I've also been having a lot of sinus issues.

Linda

[ernie h]

hi guy's and gal's.i'm 16 months post op and the wonky head is my main issue.it's worse some days than others???.and definetly when i'm most fatigued.and i don't do well in dimly lit rooms.like other said it feels like you need a couple of cups of strong coffee.(but it doesn't help).or like you've been drinking.(which i haven't been).i struggled with chronic fatigue for years prior to my surgery and that certainly hasn't improved.good luck to all and happy holidays to you as well sincerely ernie henshaw.

[wcrimi]

I had my 4-5 week checkup with Dr. Smouha (one of my two surgeons) this week and he said he expects my "wonky head" problem to go away within a few weeks. Besides saying it is not unusual post op, he said the problem is the coordination between my eyes and my remaining balance nerve. He didn't call it "wonky head" or anything like that, but he seemed to be very familar with it.  He suggested getting out often, walking, and even riding the bus because of the stimulus.  As a visual exercise he suggested that I draw the letter "B" on a piece of paper, put it on the wall, and move my head left/right and up/down while remaining focused on the letter.  I'm not sure if any of this will help me. So far I'm not improving much (if at all) in the last few weeks, but I remain hopeful and will follow his instructions.  I have another visit with him in 3 months and one with Dr. Post in about 2 months.     

[wcrimi]

wcrimi,

I started vestibular rehab today and explained the sensation as being on a boat, constantly.  Some days it feels more like ripples when other days, mostly when my brain has been 'taxed', it feels like I'm riding waves.  The therapist kept running me through some preliminary tests then would ask, "Are you dizzy now?"  I kept reiterating the word "dizzy" wasn't what I was feeling, and finally told her about "wonky head".     I then explained the motion sensation vs. dizziness.  She seemed to understand.  I now have some exercises to do three times a day for one minute, working up to two minutes, and will see her in a week.  I will go twice a week after that.  Please don't be too discouraged though.  I've come a long way in 8 weeks and have been very blessed thus far. 

David, my dear friend ... I wish I were there to sip coffee, or wine, or whatever with you.  I can only imagine how frustrated you are.  As for surgeon's not discussing the "after-math", I have to say I'm so glad to have had all of you because now that I think of it, there were no post surgery wonkiness stuff discussed with me.  I just kept getting that the initial dizziness was normal and to be expected.  I think, IMO of course, that the surgeons really don't know how we're going to 'turn out' after the surgery.  We all know it depends on the size, location and the surgeon's.  And, once they get in our heads it's all a guess.  I obtained a DVD of my surgery and it's unbelievable the area they have to work in.  Of course it's magnified but it's such a small, small area.  They cut, drilled, packed, stitched, shot fat and put plates and screws in my head!  What I'm getting at is, I guess we're all different and the surgeon's probably can't honestly tell us what may or may not be, afterwards.  Dr. S did go over all the horrible things that could go wrong so I guess that counts for something. 

As for the wonky headedness, it seems to be a bit of a mystery, doesn't it?  You are all constantly in my prayers.

Cheri

Cheri,

Would you mind describing the exercises you are doing for your wonk head?

Wayne

[wcrimi]

Hi I'm still wonky-headed. 11 months in  Some days are worse than others. I just try, try try to work past how I feel, and just keep on trucking. It makes me tired physically, and I'm not a the gal I was, however I'm just happy to be here on this earth to heal!
Donnalynn

I'm sorry you haven't improved. Maybe it just takes longer with some people. 

Did it improve at all along the way?

Did the doctors tell you that you that it would go away during your initial post surgery consultations?

What do they say now?

[wcrimi]

Thanks Cheri.  I might be able to mimic a couple of those things at home.   

[wcrimi]

It's helped for sure.  I can certainly tell how out of shape my legs have gotten with the marching part.  Forgot to mention going from a sitting to standing position 10 times too.   

Cheri

Cheri,

I have one of those big exercise balls at home. So I tried it.  I'm not sure what sized ball you use, but I can barely get my feet lifted off the ground doing the marching motion (just a few inches).  Is that about right?

Either way, it's not easy to keep the marching and head movement coordinated while you are bouncing around on the ball and trying to keep balanced.  I have a great deal of difficulty with any kind of walking, toe to toe walking etc... plus side to side head movement. So adding this in will probably help.


 

[catlover]

Hi,
From time to time I read about "wonky head". Although I haven't gone through surgery yet, I think I can imagine what wonky head is. There is one thing I've been wondering about and that is why some people get the wonky head-feeling. Has it something to do with the fact that one of the balance nerves doesn't function anymore or is it an issue because of the surgery? Is there anyone out there who knows?

As some of you already know, I have already lost my balance nerve on the right side prior surgery. Two weeks ago I got a drug in my ear that has slowly knocked out my balance nerve. The doctors here in Sweden believe that you'll be feeling less dizziness after surgery if you knock out the balance nerve and do vestibular exercises prior surgery to strengthen the balance nerve on the other side. Is there a possiblity that I won't get the feeling of "wonky head" after surgery?

Best wishes,

Helene

[LADavid]

Hey Cheri
This tread has come a long way since Linda started it a while back.  A lot of good input to offset my tantrums.  Thank you for those exercises.  I haven't gone through those in PT.  Unfortunately, most of my PT has been focused on facial reanimation and correcting the synkinesis especially since I started the Botox.  I'm going to do the exercises you suggested.

But I do have a question for everyone.  Is there something else going on with you that doesn't seem to be a balance issue -- not dizzy -- just foggy.  Sort of like tuning the dial of a radio and getting static then it gets clear.  I feel like my brain is tuning in and out.  It tends to be very disorienting and confusing.  I can't describe it better.

My best to all.

David