Did you know or suspect?

[patrickdoyle]

The best advice is to listen to your body.  It all makes sense now.  I showed some significant signs that I should not have ignored.  However I attributed it to my time in Iraq downrange as an Infantry Officer (2006-2007), where my truck was blown up pretty good.  I lost all of my hearing and that created balance issues.  Fast forward until 2011.  I was in Afghanistan as a contractor and remember all of a sudden losing my balance, falling down, headaches, tinnitus etc.  I should have got it checked out then, but I didn't.  My mentality was "drink water and it will go away."  I attributed all of this to that day and ignored symptoms.  Rock headed.  It totally floored my when I was diagnosed.  My doc said that during my explosion in Iraq that I probably had less hearing capacity to loose.  He said for example I probably went from 70% to 0 rather than 100% to 0 because of this.  Lesson of the story is listen to your body, you know when something is off and get checked out.

[luvzmutt]

I was totally shocked.  I have NF-1 and have an optic glioma (a benign tumor on my optic nerve).  I have been monitoring it since 1982, with thankfully, not change.  In July of 2010 I had my yearly MRI for the optic glioma.  Imagine my surprise when my GP emailed me and told me I had a "schwannoma in my vestibular area".  I was in Knoxville at the time taking my daughter to her freshman orientation at the University of Tennessee.  This July I will be entering my 4th year of W&W.  I have tinnitus on the AN side (the right side, the optic glioma is on the left side). I have been experiencing some dizziness (the windshield wipers drive me batty when I have to drive in the rain). I'm going for vestibular testing later this month. 

[patrickdoyle]

luvzmutt- good luck with your testing.  Everything will work out. 

[rodneyd]

Put me down in the "surprised" category.  I had known something was wrong with my balance for several years.  It was especially pronounced when I bent forward (felt like I was going to fall on my face) or when I had a glass of wine or other alcoholic drink.  One drink and I would stagger around like a drunk person.
Also had mild tinnitus.
But I never suspected a brain tumor.  When I finally went to my GP and complained about the loss of balance, she sent me to a neurologist who ordered the MRI.  When the results came back positive for an AN (.9 cm) I was very surprised, but also relieved that now I knew what was causing my lack of balance.  I was also relieved that I didn't have MS or some other serious disease. 

[terisandler]

I had no idea!  I had been unable to hear from my right ear for probably 5 or more years.  I thought it was aging.  I was told by an audiologist in 2008 that I was a few years away from needing hearing assistance.  I went to a big box warehouse store for an audiogram in 2011 and the technician there would have been more than happy to sell me their high end hearing aids but I balked at the price.  My internist at the time said I was fine since I could hear her soft spoken voice.  I move to IN shortly after that and finally got fed up without being able to hear so I decided it was time to break down and get hearing aids.  The audiologist I saw here took one look at my results and sent me to an ENT who sent me for an MRI and then for consultations with a radiation oncologist and neurologist.  I then went into research and destroy mode so didn't take the time to be shocked.