FOG HEAD

[LADavid]

Hi all
My newest challenge -- Fog Head.  Or Bobble-Head.  I guess I've been dealing with all the other issues so much that I'm just now noticing this more.  Since I'm taking a try at running again, I've noticed that my head feels like a Bobble-Head -- like it's on a spring.  I've had balance issues when I turn my head sideways or look up -- but my head seems to be bouncing around when I run.
Does this go away?  Some of this stuff I attributed to major surgery and balance issues -- but this doesn't seem to fit in any particular category.
Thanks.
David

[ppearl214]

ah, the infamous 'wonky head" (that is what we labeled it around here... that so called "disconnect feel with dizziness)...... we do the "bobble head strut" as well for vestibular exercises

I actually got a definition of it when I met with my neuro-oncologist 2 wks ago (I shared with Captn Deb.... made sense to her, I think, as well)

Ok, based on what he said... there are 3 factors that keep us steady on our feet.  Vestibular.... sight (seeing where we are going) and nerve endings/receptors, esp. in the ankles. When 2 out of the 3 are out of whack, that is when "wonky head" tends to kick in. Now, for me, my vision stinks (yeah, old 4 eyes with bifocals here), bad nerve receptors (my FMS doesn't help this one), esp. in my ankles and vestibular, well... we are in that "boat" so to say... so, in my case, since I flunk all 3, I get the wonky head, as he described it....

Anyone else fail 2 outta 3?

Phyl

[HeadCase2]

David,
  My guess is that you have what I've heard described as the "bouncy eye thing" when you run.  Vestibular function lets your vision compensate for movement.  Kind of like the anti-vibration that some digital cameras have, to compensate for shakey hands holding the camera.  With a change in vestibular function, like losing a vestibular nerve on the AN side, you may notice that you can't compensate for head movement in your field of vision like you used to.  So it's not your head boucing around, but rather your eyes not tracking for head movement.
  Vestibular function is involved in a lot of visual processing.  Look up nystagmus if you're curious.
  It gets better with time, and Vestibular Retraining Physical Therapy can help, but it may not fully recover for the missing vestibular nerve connection.
Regards,
 Rob

[leapyrtwins]

I just love the scientific terminology in these posts - "wonky head" and "bouncy eye thing" 

The sad thing is, I know exactly what you are talking about.  Had it for a while post op; don't have it any more.

Hope yours goes away David.

[Don]

 The one I get is a helicopter landing as often when I lay down at night to go to sleep I spin? Oh well at least its not painful?

[matti]

I too remember the "bobble head" feeling after surgery    I am a daily lap swimmer and the first few times after surgery were very bizarre, when I focused on the movement of the water, the worse the bobble head was. Each day I made a point to focus on the movement and soon the bobble feeling disappeared. I still unfortunetly have the wonky head 

Cheryl

[Gennysmom]

I have good days and bad with this, but learned my lesson the Friday after Valentines day that's a good example of the visual part of your balance system being out of whack.  I was riding home from work with my honey and the dozen red roses he got me for Valentines day last month, and it's a 45 minute ride home.  By the time we got home, he had to walk me because I had ZERO balance....watching the wiggly roses in my lap for 45 minutes shot it all to hell, and I felt like I did basically the day I woke up after surgery.  So be aware of things like that.  Took me 2 days to recover.  I didn't get "Wonky head" until after surgery, then that description absolutely made sense. 

Anyway, I think it gets better but it never completely goes away....every so often it gets set off again.  You get more used to it though.

[Brendalu]

I, too, love the labels we have decided on.  I told my doctor about the wonky headedness (is that a word?) and she thought it was a good description.  I'm with you Phyl, I also have three outa three and it is the pitts.  I am using my cane more and more.  I can't even walk in my own house, let a lone outside, without falling!  I am a sight!!!
Brenda

[Sue]

Yep, I've got the Wonky Headishness, also.  It varies from unnoticeable, to Whoa, Nelly!  Not so much that I fall or need a cane or anything that severe, but whatever I have is enough for me, thank you very much.  I've been dog sitting my son's Belgian Malinois and I notice on our walks, if I have my eyes on him and I'm trying to walk, and he's dancing around, and we're navigating curbs and such, then the Wonky Head comes into play.  I have to remember to take my cell phone with me, which I don't even think about doing, but I need to do that, in case I should happen to take a spill and then I could at least call 911 if I had to.  I just don't think about stuff like that, until after the fact. 

It's not as bad as it was right before and after treatment...but it's still there.  Maybe we can all get Bobble Head dolls made of us!  HA

Sue in Vancouver

[lori67]

David, the first time I attempted to run after my surgery, I felt like my brain was rattling around loose inside my head.  It did get better.  I'm one year post-op now and can finally comfortably run for short distances on the treadmill.  The problem I have now is just general laziness and the lack of exercise for a year - can't blame that on my brain though.

Keep trying a little at a time and it will get better.  I have to admit I still dread doing the George Jetson thing on the treadmill in the middle of the busy YMCA and getting thrown off the thing, but it hasn't happened yet!

Lori

[LADavid]

Thanks everyone for your input.  You put it right Lori -- "like my brain was rattling around in my head".  That was the feeling.  I started to wonder if they forgot to reconnect something after surgery.  Things are getting a little better -- but I feel very uncomfortable running on sidewalks navigating cracks and other people -- and I have to walk through turns  This weekend, my daughter and I are going to try a run around a track.  We're starting our training for our annual Revlon Run in May.

I don't know if this is true with anyone else, but when I do balance exercises, things seem to get worse.  Maybe it's my imagination

Thanks again

David

[Kaybo]

Whatever you do, I wouldn't suggest trying a cartwheel!!  I decided to try this one time - I don't remember why - & it was NOT a pretty sight!!!
K

[LADavid]

K
Cartwheel?  You're still young.  I think the last time I tried a cartwheel was in gym class in junior high when I was forced to do it.  Something about a Kennedy fitness test.  Today, I pride myself in bobbing and weaving down the sidewalk without getting picked up for public drunkeness.  Thanks for the warning though.  I'll make a no cartwheel note.

If I miss you tomorrow, good luck on your T3.  You have my prayers.

David

[Kaybo]

No one is ever too old for a cartwheel...only off limits if you have balance issues!!   
K

[Debbi]

Oh, no.  No one said there would be carwheels! What's next - a doggone balance beam? 

Hey, I should get credit for already failing the "field sobriety test" in the neurosurgeons office - without benefit of a drink!
Deb