Is their a name for bobble-headedness?

[robertweeks]

Greetings.  I am 14-months post-translab at House Clinic.  I have settled into a life of ongoing symptoms that show no sign of improving over the past 7 or 8 months.  Others on this site have indicated the recovery can go on for years.  I can be patient. 

One term I have used to describe how I feel since surgery is "bobble-headed".  My balance is still bad; I lose my balance frequently and usually catch myself, though I have fallen three times since the beginning of the year.  I have always assumed that what I called bobble-headedness and poor balance went hand-in-hand, so I never spoke much about it as a separate condition, but apparently that isn't so.

Over the past months I have gotten quite militant about doing balance exercises and practising tai chi.  My straight ahead balance has improved significantly as a result.  But, as soon as I move my head at all I get a foggy feeling in my head and my balance goes down the drain. If I move both my head AND eyes at the same time, it is worse.   This makes me feel dull-witted and exhausted very quickly. 

I spoke to House Clinic about it, but they seemed to brush it off as insignificant, though my feeling is that it is the greatest post-op handicap I have.  It greatly limits my capacity to work and focus and yet the doctors don't seem to want to acknowledge it. 

I am wondering if others have experience of this "bobble-headedness" specifically (its not dizzy/vertigo, just a foggy-headedness) as a post-op AN symptom and whether you have come across a name for that specifically.  I am applying for disability because of this and would like to not sound like an idiot when talking about it. 

Thanks very much for your time and thoughts.

[caryawilson]

Are you doing your best to avoid the bobblehead situations?  I'm not sure if I had the same feeling but I can relate to losing balance and getting a hard to describe sluggishness when turning head and / or eyes.

My best advice.. do these activities all the time.. For me this only last a couple weeks but I did these activities all the time. Basically if it makes you uncomfortable do it all the time. I looked at it like seasickness.. if you want to get over it, spend a long time on a boat.

It's about training the brain . If you do your best to avoid.. the brain will never adapt.

[UpstateNY]

robertweeks,

I believe many with an AN or that have been treated for an AN have some variation of what you describe.  You will see some refer to wonky head.  I had a lightheaded feeling when moving that has improved after surgery.

Some people appear to recover quicker than others.  An interesting statistic that my neurosurgeon told me was that pilots seem to recover from such symptoms fastest.  I guess this would make sense, since their coordination (not just balance) is being challenged more than in other professions.

I am 6 months post-translab and can still get the lightheaded feeling described above if I don't walk or do some sort of vestibular exercise over the course of a few days.  I usually try to do something every day, but I have a hectic travel schedule and sometimes just cannot.  However, I've found by trial and error what I need to do to keep myself in check.  If I really want to challenge myself, mountain biking does the trick for me with the constant bouncing.  I believe you need to find what activity will challenge and help alleviate your bobble-headed symptom.

[leapyrtwins]

Yes, there is a name for it.  Us "old-timers" refer to it as wonky head 

[mandihester]

Hi Robertweeks-  I have not received treatment yet but this is my biggest symptom.  I can relate to your "dizziness" as it sounds just like mine. 

[robertweeks]

Thank you so much everyone.  Now that I have the precise medical term of wonky-head I can move forward on this with my head held high (and moving).   

[Greece Lover]

I'm almost 4 months post-op.  I'm gradually getting better.  Then spent three days in bed with a nasty flu bug.  That inactivity was enough to activate some wonky head.  Thankfully, my PT had told me that such inactivity can cause symptoms to recur.  Just gotta get back out there working on making it better again. The new normal.   

[mandihester]

Just wondering if anyone with the "wonky head" feeling has ever spoken with their doctor about epileptic vertigo?  I read about this this morning after mentioning this to a friend.  She suggested I ask about seizure activity especially since I get so tired and fatigued even after having lots of dizziness. 

[robertweeks]

Hello Mandihester.  Responding to your query since I am the original poster, although I can only say that I have never heard of epileptic vertigo before.  Perhaps other readers can offer input.  Thanks much.

[Jenlilly]

Hi all,
I just joined this forum late last night (9/1). I'm a 9 month post-translab patient performed at Keck (USC).

I feel that I have made a remarkable recovery. Twelve weeks of physical therapy I've regained my balance and feel confident on a bike, boat and in yoga class. Although my balance is good, as soon as I begin moving my head the "bobble-headedness" starts. P.T. Referred to it as "fogginess". I don't think there is a medical term for it. I was told tense muscles in your neck can contribute to these symptoms. I've tried massages focusing on head and neck, so far no improvement with symptoms but, they feel great! P.T. Also recommend vestibular exercises, which I incorporate into my daily routine, little improvement.

My job requires fine motor skills while turning my head. Focus and concentration becomes increasingly difficult as the day progresses. The more fatigued and tired I get the worse the fogginess becomes. I believe this is part of what everyone refers to as "the new normal". I have recently resigned and I'm looking into disability. My "new Normal" has forced me to find a new career and maybe that's not a bad thing 

Best of luck

[MarlaB]

"official" term is wonky-head.

;-)

Marla

[robertweeks]

Hi All.  Came back and looked at this again.  I am now 26 months post-translab surgery.  I do have continuing symptoms of wonky headedness, balance issues (I always walk with a cane, for safety), partial facial paralysis, exhaustion and excessive need for sleep (at least, it seems excessive to me).  I am distressed by the ongoing limitations, but am also able to consider myself very fortunate.  Life is different than it used to be but it is not bad.

I have spoken to a neurologist about wonky head.  His term for it is vestibular dysfunction.  I have also found that my MRI (two of them, one pre-surgery and one at 12-month post surgery) showed a condition of diffuse brain atrophy which both the neurologist and another doctor told me could be related to the extent of the wonky head condition.  This condition they both blamed on untreated high blood pressure issues.  I am now on daily high blood pressure medication to, hopefully, curtail any further deterioration of that. 

I don't know if any of that is helpful.  It would be curious to know if the high blood pressure and diffuse atrophy issues are present for those who experience ongoing wonky head after AN.  Wondering if there is a predictable correlation there.