Author Topic: What is WONKY HEAD..........  (Read 7833 times)

Nancy Drew

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What is WONKY HEAD..........
« on: November 05, 2008, 05:44:27 pm »
I have heard so many people say they have something called WONKY HEAD.  What is this exactly? ???  As a "newbie postie" I am curious.

Thanks,

Nancy
12/05 AN diagnosed left ear 4.5mm
06/08 6mm
Gamma Knife 10/21/08
1 year MRI  6.8mm x 5.5mm
2 year MRI  5.9mm x 4.9mm
3 year MRI  6.5mm x 6.0mm 
Slight Hearing Loss Post GK

Swedish Gamma Knife Center
Englewood, CO
Dr. Robert Feehs

Cheryl R

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Re: What is WONKY HEAD..........
« Reply #1 on: November 05, 2008, 07:13:06 pm »
Wonky head is something you would know if you ever have it.      You're not dizzy but a funny feel to the head when the balance is off and you are out walking.     Might even be a bit of a different feel to each person.                   Mine is/was worse when outside or in a mall.    I still get it at times but isn't as bad as has been in the past.         
                                                     Cheryl R
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

Nancy Drew

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Re: What is WONKY HEAD..........
« Reply #2 on: November 05, 2008, 08:12:34 pm »
Do radiation people get WONKY HEAD?  Since I am a "newbie postie" I am "on watch" for stuff right now, and I guess I should chill out and take it day by day. Still, I'm interested in learning more about this topic.  Nancy 
« Last Edit: November 05, 2008, 09:08:31 pm by Nancy Drew »
12/05 AN diagnosed left ear 4.5mm
06/08 6mm
Gamma Knife 10/21/08
1 year MRI  6.8mm x 5.5mm
2 year MRI  5.9mm x 4.9mm
3 year MRI  6.5mm x 6.0mm 
Slight Hearing Loss Post GK

Swedish Gamma Knife Center
Englewood, CO
Dr. Robert Feehs

leapyrtwins

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Re: What is WONKY HEAD..........
« Reply #3 on: November 05, 2008, 08:21:31 pm »
I could be wrong, but I don't think wonky head is exclusive to us surgery patients.

Nor is it exclusive to radiation patients.

I think it's more of an AN/balance thing that doesn't really have anything to do with treatment option.

Jan

Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

Nancy Drew

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Re: What is WONKY HEAD..........
« Reply #4 on: November 05, 2008, 09:51:23 pm »
Yes, I have had a few too many.  Not so nice.  What happens if you are drunk and have wonky head at the same time?  Probably not a pretty sight!

Nancy ::)
12/05 AN diagnosed left ear 4.5mm
06/08 6mm
Gamma Knife 10/21/08
1 year MRI  6.8mm x 5.5mm
2 year MRI  5.9mm x 4.9mm
3 year MRI  6.5mm x 6.0mm 
Slight Hearing Loss Post GK

Swedish Gamma Knife Center
Englewood, CO
Dr. Robert Feehs

Kaybo

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Re: What is WONKY HEAD..........
« Reply #5 on: November 05, 2008, 09:52:54 pm »
Nancy~
I would think that if you are drunk, you probably wouldn't care about being wonky headed, but I agree:  Probably NOT a pretty sight!!   ::)

K
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

Nancy Drew

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Re: What is WONKY HEAD..........
« Reply #6 on: November 05, 2008, 09:57:54 pm »
CHEERS ;D ;D ;D
12/05 AN diagnosed left ear 4.5mm
06/08 6mm
Gamma Knife 10/21/08
1 year MRI  6.8mm x 5.5mm
2 year MRI  5.9mm x 4.9mm
3 year MRI  6.5mm x 6.0mm 
Slight Hearing Loss Post GK

Swedish Gamma Knife Center
Englewood, CO
Dr. Robert Feehs

Tamara

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Re: What is WONKY HEAD..........
« Reply #7 on: November 06, 2008, 06:24:50 am »
Having one too many is a good analogy for wonky head.  I didn't have it for long, but to me it felt like things were out of proportion, and were distorted - sort of like if you photographed your life in snapshots about a second apart, and then put it together, instead of it rolling smoothly like a film.  The odd sensation of that happening sort of throws your balance off kilter.  So for me it was a vision/balance issue, not exclusively balance.

Tammy
7 mm AN left side
translab 6-12-08
postop issues including CSF leak, eye issues, and facial palsy.  All issues resolved at 9 mos. except slight facial palsy & weakness.  Continuing to improve...

Rivergirl

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Re: What is WONKY HEAD..........
« Reply #8 on: November 06, 2008, 06:48:14 am »
Wonky head.........I finally see why I was an easy drunk, I was half way there already.
Diagnosed 6/2008
Right AN 2cmx8x9
Sub-Occipital at Mass General with Martusa and McKenna on 5/31/11
Right SSD, very little taste
I think I will make it!

wendysig

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Re: What is WONKY HEAD..........
« Reply #9 on: November 06, 2008, 08:32:24 am »
Perfect descriptions of wonky head! ;D  Having a drink or two when you're feeling wonky headed might land you on the floor.  Cheryl's description is exactly what I feel and under the same circumstances.  It does get better!

Wendy
1.3 cm at time of diagnosis -  April 9, 2008
2 cm at time of surgery
SSD right side translabyrinthine July 25, 2008
Mt. Sinai Hospital, New York, NY
Extremely grateful for the wonderful Dr. Choe & Dr. Chen
BAHA surgery 1/5/09
Doing great!

MaryBKAriz

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Re: What is WONKY HEAD..........
« Reply #10 on: November 06, 2008, 08:49:18 am »
Hi,

I am queen of wonky head ;D. I have had it since pre-CK. It was the main reason I got more interested in pursuing other hearing issues. For me it is always there but varies in degree of imbalance, dizziness. I have the visual problems that often accompany it. If I am in a car, for instance, the things I look at appear to move MORE than they would. If we go over a bump in the road, it amplifies the bump and I cannot focus. Cars passing seem to visually look like a swoosh instead of normally configured cars. I do believe it is worse since radiosurgery, HOWEVER, I am only 5 months post-CK AND I had all my zappings in one day, instead of fractionating them. Long story about why I decided to do that. I do feel it was more of a jolt so probably can't be compared to normal CK.

I may have a procedure where and injection(s) of this antibiotic that is toxic to the balance organs. This causes no signals to be sent to the balance nerve, anymore. Then the brain can adjust to a set point and stop reading those signals allowing adaptation to the new scenerio.

Take care fellow wonky-heads, I feel your dizziness!

Mary ;D
Diagnosed March 24, 2008, 1.1cm, right side, "Goldie" - small but mighty!! :-(
Hearing, lottsa balance problems and a few facial twitches before CK
CK June 2, 2008, BNI in PHX, Drs Daspit/Kresl, side effects,steroids helped. Getting "sea legs".
Apr 2012 - Still glad I chose CK

cin605

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Re: What is WONKY HEAD..........
« Reply #11 on: November 06, 2008, 01:37:43 pm »
Funny.. not so funny story...before i knew i ha an AN..i thought i was getting ear infections well during an episode of ear infection i drank 3 glasses of wine at a local restraunt/tavern..
i went to get up from my chair & literally fell down ...hard...my bf had to help me off the floor becouse i could not regain my balance..it was off for days i had to call into work becouse i really could not stand up.SCAREY.
I decided that i would not have any more cocktails during an episode.
Now after surgery i have couple & i think i walk straighter after acouple of "teas"
2cm removed retrosig 6/26/08
DartmouthHitchcock medical center lebanon,N.H.
43yrs old

Sue

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Re: What is WONKY HEAD..........
« Reply #12 on: November 06, 2008, 01:47:51 pm »
Hi Nancy,

Wonky Head, as you probably have gathered by now, is when your balance system is just enough out of whack to make things unsteady, but possibly not so out of whack that you actually feel "dizzy".  There is a great explanation of how our balance system works and this is a wonderful article to read.  I don't know if you read it or not.  I think this should be handed out to everyone with an AN!  It explains a lot.

http://www.hearinglosshelp.com/articles/balancesystem.htm

Sue in Vancouver USA
Sue in Vancouver, USA
 2 cm Left side
Diagnosed 3/13/06 GK 4-18-06
Gamma Knife Center of Oregon
My Blog, where you can read my story.


http://suecollins-blog.blogspot.com/2010/02/hello.html


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arkansasfarmgirl

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Re: What is WONKY HEAD..........
« Reply #13 on: November 06, 2008, 04:28:00 pm »
I definitely had the Wonky head thing going on right after I had the baby.  That's the biggest reason I finally went to the dr.  I could no longer deny that there was something BAD wrong.    :P  You should have seen me trying to ride my horse.  It was so bad that I had HER walking like a drunk.  LOL  It's much better now, even though other symptoms are worse.  I wonder if that is good or bad...

Vonda

Nancy Drew

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Re: What is WONKY HEAD..........
« Reply #14 on: November 07, 2008, 05:26:07 pm »
I am wondering about the vision issues.  I have always had good eye sight......20/20.  I think since radiation my eyesight has changed.  I feel like I need to get glasses.  My annual eye exam is coming up soon.  But, do any of you think radiation can affect eye sight in general?  If so, will it pass? ???  I am quite disturbed because I have always thought, "Well, I might not be able to hear, but at least my vision is good!!!". 

Nancy
12/05 AN diagnosed left ear 4.5mm
06/08 6mm
Gamma Knife 10/21/08
1 year MRI  6.8mm x 5.5mm
2 year MRI  5.9mm x 4.9mm
3 year MRI  6.5mm x 6.0mm 
Slight Hearing Loss Post GK

Swedish Gamma Knife Center
Englewood, CO
Dr. Robert Feehs