Author Topic: Wonky Head Defined  (Read 6099 times)

MNTim

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Wonky Head Defined
« on: September 17, 2011, 08:17:52 pm »
I have seen the phrase "Wonky head" used quite often in the forum.   I think I may experience it periodically but am not sure.  Please share your definitions of this phrase.

Tim
8/31/09 hydrocephulus-emergent drain
9/2/09 5 cm AN debulked, Retro Sig Abbott NW
5/18/10 Second debulk, Retro Sig Abbott NW
1/31/11 Translab, 7/12 Graft Mayo Rochester, MN
2/12/11 Lumbar drain
3/14/11 Eustacian tube packing procedure for CSF leak
2/28/13 Platinum weight & Tarsorrhaphy

CHD63

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Re: Wonky Head Defined
« Reply #1 on: September 18, 2011, 05:55:53 am »
Probably many definitions will show up here .....

Mine:  that feeling of disorientation when I cannot distinguish where I am in space.

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

New girl

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Re: Wonky Head Defined
« Reply #2 on: September 18, 2011, 08:26:57 am »
How long does Wonky Head usually last?  Minutes, hours?  Thanks.
9mmx14mmx9mm
Diagnosed 6/1/2011
Retrosigmoid Surgery 9/27/2011
Daniel Lee (MEEI) & Fred Barker (MGH) - Exceptional Surgeons

Cheryl R

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Re: Wonky Head Defined
« Reply #3 on: September 18, 2011, 08:38:08 am »
Like usual around here, varies with each person.     Can be worse right after treatment and get better slowly but hang around for days, weeks or months.     Mine is with activity and not every time.  Mostly outside and with sunny ,windy days and walking alot.        Some in a mall.      Those stores with the super shiny floors drive me nuts!      Mine is just an odd head feeling, you're not dizzy but just not quite right as you walk.      I can walk and have it and my walking looks great or I be weaving all over and have very little.                This is with no balance nerves, back in the day of just missing one can say it had went away over time.            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

JAndrews

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Re: Wonky Head Defined
« Reply #4 on: September 18, 2011, 08:58:02 am »
It lasted on and off for about I year. The word "wonky" is the perfect word for it. To me it felt like a side to side funny like motion, or when I turned my head to quick--It still happens, but rarely. It has to do with the loss of the balance nerve.
2.5cm x2.0cm cerebellapontine angle meningioma. 100% removal 2/2009. House Ear Institute. Dr Brackmann and Dr. Schwartz. SSD right ear. No balance problems except when really tired, no headaches. Transear hearing aide made no difference, tried it for 4 months.

MNTim

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Re: Wonky Head Defined
« Reply #5 on: September 18, 2011, 10:37:38 am »
Thanks for all of your responses.  My symptoms are periodic feelings of disorientation.  Nothing severe just a sudden feeling of being disconnected from the moment.  I have the episodes of weaving (while walking, not driving) and difficulty with visual focus. 

More descriptions are welcome.

Tim
8/31/09 hydrocephulus-emergent drain
9/2/09 5 cm AN debulked, Retro Sig Abbott NW
5/18/10 Second debulk, Retro Sig Abbott NW
1/31/11 Translab, 7/12 Graft Mayo Rochester, MN
2/12/11 Lumbar drain
3/14/11 Eustacian tube packing procedure for CSF leak
2/28/13 Platinum weight & Tarsorrhaphy

alabamajane

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Re: Wonky Head Defined
« Reply #6 on: September 18, 2011, 01:39:03 pm »
I also have this feeling from time to time.. disoriented, I do weave when walking and just don't feel "with it" sometimes..hard to describe but if you feel it, you know it! I was boating over labor day and I guess between the wind and waves, ,I was terribly sick feeling when back at dock and had to lay down for several hours. My head just feels full, or off balance and I just want to steady it by lying down or holding it in my hands. Bad feeling but not all the time thankfully..sometimes I believe it may be worse when overly tired or emotionally exhausted,, imagine that ,, who would think we could be emotionally exhausted dealing with these tumors and decisions to be made!! Hope this helps some and that you get to feeling better....
translab Oct 27, 2011
facial nerve graft Oct 31,2011, eyelid weight removed Oct 2013, eye closes well

BAHA surgery Oct. 2014, activated Dec. 26

Brewers7

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Re: Wonky Head Defined
« Reply #7 on: September 18, 2011, 03:40:16 pm »
I felt like a bobblehead doll; my head would not balance on my body. This got progressively better but lasted for nearly a year.
Translab surgery 12/15/2008 followed by CSF leakage repair and 3 additional surgeries for MRSA of the brain (NOT typical) SSD,  facial and vocal cord paralysis, numerous reconstructive surgeries, Transear 12/2010

Anasazi42

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Re: Wonky Head Defined
« Reply #8 on: September 18, 2011, 04:20:09 pm »
I read all the various descriptions of "wonky head" and thought, yup! They are pretty accurate descriptions of this feeling that can't quite be described to family members/friends, but you'll know it when you feel it. The other symptom I have is when I'm in bed or on the couch relaxing and want to shift, move, or get up and I feel... I guess a good word is heavy... like those dreams where you want to run or move but your body doesn't quite cooperate. it's not that I can't move I just feel like I'm moving me and some invisible extra weight.
Diag. Dr. Saffran ENT 3-9-11; 45 yrs at time of diag. 3.5+ cm AN rt side; 9 hr retrosigmoid craniectomy 5-12-11 FL Hosp. South, Neurosurgeon Dr. Melvin Field; Gold wt implant
Post-op: facial para. (rt), double vision (cleared up), SSD, tinnitus, balance issues, ataxia, movement disorder

ppearl214

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Re: Wonky Head Defined
« Reply #9 on: September 19, 2011, 04:14:04 am »
Hi

There is a long-time user here, CaptDeb, who "coined" the term "wonky head" that I have explained to my dr's (and vet since my dog also has it!) that they all now understand.  Typically defined (in line with what others here have noted) as "head disconnect, such as being on cold meds, with a hint of dizziness to it".

I think Deb needs to cash in on the term! :)

Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Chances3

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Re: Wonky Head Defined
« Reply #10 on: September 20, 2011, 11:50:35 am »
Wonky head hmmm...

Definitely disorientation can be one characterization.

I say, it's like the next day when you had no sleep, you are also suffering from jet lag and you are
standing on the deck of a cruise ship in a bad storm.  That's my wonky, and it's worse in rainy humid days, along with the barometric pressure. 

mk

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Re: Wonky Head Defined
« Reply #11 on: September 20, 2011, 12:58:23 pm »
I found that the best way to describe this to non-ANers is to say that it feels as if you have had a glass (or two depending on the person) of wine. When the head feels a bit "disconnencted", but other than that you can function normally.

Marianna
GK on April 23rd 2008 for 2.9 cm AN at Toronto Western Hospital. Subsequent MRIs showed darkening initially, then growth. Retrosigmoid surgery on April 26th, 2011 with Drs. Akagami and Westerberg at Vancouver General Hospital. Graduallly lost hearing after GK and now SSD but no other issues.

GM

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Re: Wonky Head Defined
« Reply #12 on: September 20, 2011, 04:35:51 pm »
Does it feel like your in a dream....but wide awake? 
Originally 1.8cm (left ear)...Swelled to 2.1 cm...and holding after GK treatment (Nov 2003)
Gamma Knife University of Virginia  http://www.medicine.virginia.edu/clinical/departments/neurosurgery/gammaknife/home-page
Note: Riverside Hospital in Newport News Virginia now has GK!!