Author Topic: What is WONKY HEAD..........  (Read 7631 times)

MaryBKAriz

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Re: What is WONKY HEAD..........
« Reply #15 on: November 07, 2008, 10:00:51 pm »
Hi,

I will hear more about it on the 18th. I hope to give you all a good update then. It is called gentomycin. It is used for Mennieres (sp?). I know there are different dosages. I just want to make sure it doesn't cause louder tinnitus, it bothers me enough already. I have a very discordant avante garde concerto in my head.  ;D

Take care,

Mary 8)

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

Tamara

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Re: What is WONKY HEAD..........
« Reply #16 on: November 08, 2008, 07:44:07 pm »

Tammy, this is what I'm still experiencing.  I'm curious to hear how long this lastest for you, or is this something we just learn to live with.  My vision on my good side has become distorted since surgery.  My neuro said my good side shouldn't be doing this and advised me to see my optho if it doesn't resolve itself.  I'm going to give it eight weeks or so before I make an appt.

Great discription of "Wonky Head" by the way.  I'm writing it down to share with others.  Short and to the point. 

Cheri

Cheri,
  The Wonky Head lasted about 2 months, I'd say, but the intensity of the disorientation was decreasing during that time.  It's not like one day I had it and the next I didn't.  I still have it upon (rare) occasion, usually at night or if I turn suddenly.  I had poor vision in both eyes following surgery.  My AN side eye had no tears, so was always either blurry because it was dry or blurry because I'd just doused it with eye drops again.  My non AN side eye had poor vision for maybe 3 or 4 weeks after surgery - I don't know why, and neither did the opthamologist.  Hope your symptoms subside soon.  On the bright side, my eye now had proper tears again, and my vision is fine.  It's just such a S-L-O-W process!

Tam
 
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...

marguerite

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Re: What is WONKY HEAD..........
« Reply #17 on: November 10, 2008, 04:33:24 pm »
i've never heard of wonky head in re: to off balance but thought it was interesting at the baltimore support group last month a patient said he felt as though he's walking on a moving bus. Now that i can relate to!

wcrimi

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Re: What is WONKY HEAD..........
« Reply #18 on: December 11, 2008, 05:37:30 pm »
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

This is exactly the way mine is. My surgeon described it as a problem with the coordination between between the eyes and remaining balance nerve.


1 cm, 6mm, 4mm on Left side. Surgery performed 11/6/2008 by Dr. Kalmon Post and Eric Smouha at Mt. Sinai Hospital in NYC.
Normal hearing before, 85%-90% now, dizziness when walking or turning head, annoying hissing and high pitched tinnitus on and off, eyes have trouble adjusting to rapid head move

Sheryl

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Re: What is WONKY HEAD..........
« Reply #19 on: December 11, 2008, 07:45:33 pm »
Is "Wonky Head" a real medical term?  I've been doing medical transcription for over 40 years and have never run across it.  I do think Phyl coined the phrase originally and it stuck because it fits so well.  Maybe next time I get a dictation from a neuro doc about disorientation, etc., I'll change it from "the patient felt disoriented" to "the patient felt wonky headed" - LOL!!!
Sheryl
9th cranial nerve schwannoma - like an acoustic neuroma on another nerve. Have recently been told it could be acoustic neuroma. Only 7 mm of growth in 18 years. With no symptoms. Continuing W&W

wendysig

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Re: What is WONKY HEAD..........
« Reply #20 on: December 12, 2008, 06:55:56 am »
Sheryl,
Capt. Deb said this phrase was actually coined by her and her late cousin .  She seemed quite sure he would get a kick out of it sticking and all of us using it.  If you really used wonky head in a report, I can only imagine the doc's face if he saw that  :D (the doc's fact == :o)

Still laughing,
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!

Sheryl

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Re: What is WONKY HEAD..........
« Reply #21 on: December 12, 2008, 09:20:31 am »
Hey Wendy - thanks for setting this "wonky head" straight and thanks to Capt. Deb for the initiation. 
Happy, Healthy New Year,
Sheryl
9th cranial nerve schwannoma - like an acoustic neuroma on another nerve. Have recently been told it could be acoustic neuroma. Only 7 mm of growth in 18 years. With no symptoms. Continuing W&W