Author Topic: What is a "Wonky head" ?  (Read 14275 times)

epodjn

  • Full Member
  • ***
  • Posts: 218
Re: What is a "Wonky head" ?
« Reply #15 on: August 05, 2009, 09:00:47 am »
Patrick,
Isn't it nice to finally find people who know how you feel? And have all kinds of fun definitions for it. Welcome to the group.
Left side 3.2cm AN/FN removed 12/8/08 Dr's. Shelton and Reichman. SSD, facial paralysis,taste issues, lateral tarrsoraphy 6/25/09,scheduled for eye and nasal valve surgery 6/22/11 life is GOOD!

Vivian B.

  • Hero Member
  • *****
  • Posts: 583
Re: What is a "Wonky head" ?
« Reply #16 on: August 05, 2009, 06:33:20 pm »
Hi Mike,

I  haven't been treated yet but I had a couple of bouts of wonky head. One this morning. It feels like you are trying to balance yourself in a canoe or paddle boat. Not pleasant.

Anne Marie,

Sorry to hear about your ankle. Last night I tried to walk into my room in the dark. I totally lost direction. I didn't even have a drink! I used to be very balanced in the dark before. I guess it's all part of this journey.

Vivian
CPA AN(most likely meningioma) 1.6cm by 1.5cm by 1.9cm diagnosed early March 09. Watch and Wait.

moe

  • Hero Member
  • *****
  • Posts: 1697
Re: What is a "Wonky head" ?
« Reply #17 on: August 05, 2009, 11:51:10 pm »
I'm so glad it turns out I don't have wonky head.
Just some basic disequilibrium/balance problems with some brain farts too! (lots of those).
We all have to deal with our own little demons, don't we?
Hang in there all you bobble heads ;)
Maureen
06/06-Translab 3x2.5 vascular L AN- MAMC,Tacoma WA
Facial nerve cut,reanastomosed.Tarsorrhaphy
11/06. Gold weight,tarsorrhaphy reversed
01/08- nerve transposition-(12/7) UW Hospital, Seattle
5/13/10 Gracilis flap surgery UW for smile restoration :)
11/10/10 BAHA 2/23/11 brow lift/canthoplasty

areles

  • Jr. Member
  • **
  • Posts: 55
Re: What is a "Wonky head" ?
« Reply #18 on: March 26, 2016, 07:14:39 pm »
bumping this thread because my son describes a feeling, when he turns his head from side to side, of dizziness followed by what he calls a spasm.  when i asked him to explain, he said it feels like his head is dancing around.

is that wonky head?  or something else?

he's alarmed by it, but if this is what everyone else is referring to, it might help him to know that (unfortunately), it's part of things.  if what i'm describing is different than what others experience, any thoughts on what it could be/how to better describe it to the docs, perhaps?

thanks in advance!
22 y/o son:

2.8cm dx 12/31/15
translab (10 hours) at house clinic 2/23/16 - dr schwartz, dr miller
surgical repair of csf leak 2/27/16 - dr miller, dr chen
as of 2/28/16, still in hospital, with tentative release scheduled for 3/1/16
{indeed sprung 10:15a 3/1/16}

CHD63

  • Administrator
  • Hero Member
  • *****
  • Posts: 3185
  • Life is good again!!
Re: What is a "Wonky head" ?
« Reply #19 on: March 27, 2016, 05:14:35 am »
Probably each of us could come up with a variation of how we would describe the "wonky head" feeling.

From your description, it fits that his remaining non-AN side vestibular nerve is still adjusting to being the only one working.  For anyone with two normally working vestibular nerves, it is hard to understand.

Many of us benefitted from professional vestibular therapy post-AN treatment.  There are a number of web sites that give good vestibular exercises to do at home that will assist the brain in making the adjustment to one working nerve.  Just do a search on vestibular exercises.  Tai chi is also an excellent way to regain balance.  I started with walking back and forth in the hallway of my home (where I could easily touch both walls), while turning my head from side to side and then up and down while walking ..... increasing my speed as I was able to do it without touching the walls.

If his symptoms persist in spite of walking daily in a safe environment, he should mention it to his doctor, who could order vestibular therapy.

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

 


anything