Wonky head

[tdcottongim]

In April of 2018 I had a tumor removed which also resulted in both vestibular nerves being cut on my left side.  After regular exercises my balance has improved but I still have the wonky head feeling, which is beginning to take a toll on my emotions.  I would like to know if the wonky head feelings will ever subside or whether I should just accept it.

[jami]

Hi,

I had a tumor removed in Aug 2018, also with the vestibular nerves cut (but on the right side). I thought I was doing great for a while, but in March realized that I keep waiting to get better and was finding myself emotional as well. Random facial numbness (not a big deal but a clear reminder), memory and details are not where they used to be and never will be, and when tired - complex thought gets tough.

I am moving into acceptance, this new normal. (Although i fight it every day). I have lists lists lists, and have made changes to my work hours & approach.

Not sure if this is helpful. I have not gotten my hands around what to expect and how to manage it yet in a way i am comfortable yet. BUT rest and walking help clear my head when it gets to be too much.

[Surfer]

I am hesitant to influence a persons hope in any negative way, but I personally find that validation of my experiences by other members has been very valuable.  I hope your experience evolves into something better that mine.  I have a lot to be grateful for in my outcome, but many consequences seem to be consistent for a long enough time to be considered my new norm. Other than the obvious deafness challenges, I experience pretty heavy fatigue, mental confusion when faced with stressful situations, cognitive difficulties (typing, vocabulary, memory), waking in the middle of the night and not falling back asleep, double vision when looking up and out of the corner of my eye, daily fogginess (wonky head).  Irritability and slight depression (probably from the quality of life losses). 
Background:
I was a powerplant manager efficient at office work, organization, fast responses to industrial problems, avid sailor, fairly large wave surfer- (extremely capable in stressful situations)
Had 4.6 CM removed at age 56 (three years ago)
Extremely energetic and physically active before the surgery.

Present:  Still active.  I surf, ride motor cycles, and skateboard.  I can't do these things for very long anymore (around a 75 % reduction in time spent on activities) because of lack of energy and fatigue, but I'm not giving up! Not capable of doing the type of stress reactive work I did before the tumor removal.

I wish you the best.  Hang in there.

[jrlf]

My experience is recent and may change. I had my 3cm AN removed in Jan/Feb (I say that because had a second surgery to correct a CSF leak through my nose).
So far, the wonky head feeling (more like a vertigo/lightheaded feeling) is constant. It was a bit better before I went back to work and started to exercise again.
I frankly got very traumatized but the CSF leak experience (and still think it was not completely fixed, due to the very vertigo and the feeling of a liquid behind my nose).
I am active and try to run/job/walk 3 times a week and go to the gym 3 times as well. Something it takes a toll. I hate not being at my 'maximum',so, maybe this is just something I will have to get used to (the new normal).

[jaylogs]

Greetings all and thank you for all the kind contributions to the forum! This journey can be a struggle from even before we get our initial diagnosis all the way to even years after the surgery. I'm coming up on my 10th ANniversary and even after all this time that lil 8mm bugger that used to be in my head and caused so much trouble still reminds me of what used to be.  That being said, we have a saying around here that everyone's experiences are unique and will be different for everyone so just know that wonky head thing will be unique to you.  After my surgery I had mild wonkiness, but some of the people that were in the hospital with me had MAJOR wonky.  Then as months passed it slowly got better, but was still feeling it especially during storms that came in.  Then even that started to fade to where now, almost 10 years later, every once in a while I'll catch myself doing an occasional "whoops" as I teeter off to the side or something.  Again, that's just me.  And yes, these are the new normals that you'll probably have to adjust to.  So, enjoy! LOL  Life is good though, so keep your spirits up! Take care and have a fabulous holiday weekend!
Jay