Wonky head

[mk]

Hi everyone,

I think I am experiencing this "wonky head" feeling that people here on the forum sometimes describe. Hard to explain, being light-headed, not really dizzy or nauseous, but certainly not 100% steady. Sometimes feeling odd when turning my head sideways, or upwards suddenly. I am now 5 months post GK, so I guess such side effects can be expected. I should also mention that I am recovering from a rather nasty flu. I don't feel anything else such as pressure etc. Is this a symptom that I should worry about? I wanted to contact the radiation oncologist but I am not even sure how to describe the feeling. My husband certainly couldn't understand it when I tried to explain yesterday.
Has anyone experienced something similar? Any input or advice is appreciated.

Marianna

[ppearl214]

Hi Marianna,

Oh, many of us certainly know "wonky head"... I even have my medical team understanding the term now as well.... for me, I note it to them as that "dizzy, yet head disconnect feel like taking cold meds".... throws my balance off, slight dizziness, etc.  I believe Capt'n Deb, a user on this site, coined the term "wonky head". My neuro-oncologist actually elaborated on it with me and there is an actual medical term for it, but my brain-boogered head can't remember the exact term.

You are one of many.... nothing to totally worry about unless symptoms enhance that you may want to follow up. Over time, for me, I've just learned to deal with it... sometimes I joke about it, noting I do a great impersonation of a drunk without the use of alcohol.

I expect many to respond to this thread.. many here can relate.

Hang tough!
Phyl

[Omaschwannoma]

I too understand the "wonky head" all too well.  After VT for a second time though I can say it is well hidden.  On occasion I will veer off in another direction, sort of like an invisible hand pushing me there?!  Sometimes I feel a centrifugal pull or push and of course, the "disconnected from body" feelings.  Welcome to wonky head land!  Sorry! 

[Jan D]

I have a different type of "wonky head", if you want to call it that.  Occasionally, when I'm very tired, I'll feel a "fullness" in my good (non-AN) ear, a sort of rushing sound and I just don't feel quite right.

The only thing that helps is to rest and eat something with protein.  I know, that sounds wierd...

I have asked my Primary care doctor about it and he said that it is a side effect of the surgery and isn't anything serious, but it's very disconcerting when it happens. 

I'm sure that we all have different versions of the "wonky head", but that's mine.

Jan D

[HeadCase2]

Marianna,
  At 5 months after SRS treatment you may be experiencing some affect on the balance nerve on the AN side.  This can affect vestibular function. Surgery patients can have wonkyhead in a major way right after surgery if the balance nerve was cut, and then they have a period where the brain has to relearn vestibular function to some extent.   For SRS patients this may show up some time after treatment, and people on this forum have mentioned 6 months after treatment as a time when odd things can show up.  Most are transitory.  If your balance nerve is just now being affected, you will most likely have a period where the brain is relearning how to deal with the changed vestibular input.  But the wonkyheadedness lessens with time.  If the balance nerve is permanently affected, some have lingering moments of wonkyheadedness.  I do every once in while, but it does not keep me from doing all my normal activities, including sports.
Regards,
  Rob

[macintosh]

Marianna--

My experience matches exactly what Rob is saying. At six months, I had a persistent feeling that was like mild jet lag. On a good day, I would have a few clearheaded hours, but then I would get mentally tired pretty quickly. If I drank any alcohol, I felt really awful the next day. My six month MRI showed swelling. All of that fuzziness has gone away over the past year, and my recent 18 month MRI showed shrinkage. I understand what you mean when you say that it's subtle and hard to explain, but I definitely feel more normal now than I did a year ago.

Hope your experience gets more like mine,

Mac

[mk]

Thank you everyone for your reassurances. I feel better already 

I was worried, because during my 3 month post-GK visit, I asked the doctor what kind of warning signs I should be looking for in case there is swelling, and she said "diziness when turning the head from one side to the other". But based on what everyone has said, there may be some vestibular issues to 5 months GK and also I guess that if I had severe swelling, I should be experiencing some other symptoms too.

Well, as always, take it one day at a time ...

Marianna

[goinbatty]

I'm about 8 months post CK and know exactly what you all are talking about.  A few months after treatment, I would occasionally experience brief spells of feeling a bit off.  Not dizzy at all.  More like uncoordinated for a second.  Around 6 months, I developed brief power surges to the brain.  The only way I can explain that feeling is it's similar to a TENS unit used for muscle/back pain.  The surges lasted more like a second.  But when I was tired, this occurred so frequently it got on my nerves.  EEG was negative for seizure activity thank goodness.  I had that done due to a history of seizures.  The odd thing about the surges is it started up for a week, then quit, came back with a vengance and last probably 2 weeks at which point I had the EEG done.  A week later it stopped and hasn't recurred since.  I'm pretty much back to normal although if you asked my family they may say otherwise - HA!  I rarely take naps but when it's time for bed at night, I truly know it.  It gets to where I can't hold my eyes open.  As far as activity, I'm back to walking longer distances but haven't tried a bike again yet.  Guess I'm a bit paranoid but I'll eventualy do that too. 
Sandra

[lacey7]

I don't think anyone who hasn't gone thru this could possibly understand our term "wonky head".  People look at me like I'm nuts if I say that word!!
It is even hard to describe, but I hope it goes away after a year, like most people say it does.
For me, it's a feeling unlike anything I've ever felt before. 
I can't wait until the day when I feel like I used to, before AN.......or at least as normal as I ever will feel.
Take care, and know that you aren't alone.
Lacey

[Sue]

I had my GK in April of "ought 6" and I still get wonky-headed now and then.  It is better, I am sure of that.  And yes, it certainly depends on how much rest you've had, if you've had a good nights sleep or not, if you are stressed out and running on empty, etc.  That darn vestibular nerve just isn't happy and if it's not happy, then it's going to let us know about it.  Why being tired aggravates things is a bit of a mystery to me, but it does. 

As a Star Trek fan, I immediately thought of the episode where Cap't Kirk is "out of phase" with the rest of the Universe and is floating around waiting for his shipmates to figure out where he is and rescue him.  When I had Wonky Head at it's worst, I thought ' Wow, I'm out of phase. This is what Jim felt like!"

Anyway, it seems this is something most ANers have to deal with and usually it gets better over time as the nerve heals and the brain figures out how to deal with balance on one side of the head only.   And our poor wee brains get tired and rebels, and there you have it.....wonky head in all it's glory.

Hang in there, Kids,

Sue in Vancouver USA

[Captain Deb]

Origin of the word: As I was recovering my balance around 4-5 months post-op, my dear cousin Cameron, a Baptist minister who performed my marriage ceremony and a frequent visitor to my home, was going through radiation for glioblastoma brain cancer, and was very unsteady on his feet. He and I would hold onto each other and walk around the back yard. I was having horrible headaches, but he knew he was dying. Cam never lost his sense of humor and would announce, "watch out--here come the wonkyheads!" Both our heads had been shaved on one side and we had mirror image scars. We lost Cam 2 months later. He would get a kick out of knowing that the word lives on!

Capt Deb

[ppearl214]

Captn...  not only would Cam be proud that his term carries on in life... but that we even have our docs understanding what it is..... He's smiling down on us... I can feel it!

xo
Cruise Director.

Origin of the word: As I was recovering my balance around 4-5 months post-op, my dear cousin Cameron, a Baptist minister who performed my marriage ceremony and a frequent visitor to my home, was going through radiation for glioblastoma brain cancer, and was very unsteady on his feet. He and I would hold onto each other and walk around the back yard. I was having horrible headaches, but he knew he was dying. Cam never lost his sense of humor and would announce, "watch out--here come the wonkyheads!" Both our heads had been shaved on one side and we had mirror image scars. We lost Cam 2 months later. He would get a kick out of knowing that the word lives on!

Capt Deb