Watch & Wait is OVER...

[CDeBrosse]

I haven't been on here for quite awhile.  I've been doing the "watch & wait" thing for a couple of years.  Of course, I see my specialist every 6-9 months or so.  Last MRI was January 2016 (next one is October).  I've noticed that my hearing isn't as sharp as it was, and background noise tends to make me hear like Woody from Snoopy ---Wa, wa, wa!  I saw my dr, who said, it's time to get this thing out.  Hearing test show slight decline, and I have nystagmus(?), whatever that really means.  So I go see the surgeon, and we decide that my best option is the middle fossa approach.  I'm a full time student, in my last 2 semesters of school, 2 school age kids, so I opted to schedule surgery during my winter break, as to not miss clinicals, and still graduate on time in May.  Strangely, this week, I took a nap with my daughter and when I woke up, it's like my head is under water, or like wind blowing into a microphone.  I can't stand to hear bass in music, tv (with all the scene change music), dogs bark, my ears feel full.  I'm not congested, or have any type of cold.  I took a Mucinex, hoping maybe drainage.  No help.  I tried a claritin the next morning, again no help.  So dr is putting me on steroids, thinking maybe the nerve is aggitated.    Has anyone else had this type of thing?  I can't even describe it, but crying is becoming more of thing    My teeth have been hurting lately on the left side of my face....is that normal?  Metal taste in that left corner of my mouth.....I hate this.  I want it to be over!!!!!

[Sheba]

The symptoms you describer are mostly pretty typical.

The ear fullness - I think that's something to do with some kind of spasm in the inner ear muscles, which is normally "inhibited" by a properly functioning acoustic nerve.  Lots of ANers have the fullness thing.

Not liking some sounds - that is Hyperacusis, the nastier twin of Tinnitus.  Again, acoustic nerve damage.  It supposedly adapts over time / mellows out - mine is relatively new so I can't say from experience.  Tinnitus probably explains your microphone in the wind sensation.

Metal taste - sounds like tumor starting to irritate the facial nerve.  (taste is controlled by more than one cranial nerve, part of it is on facial nerve)

Teeth hurting - not mainstream AN but there are some unusual symptoms people mention.  Maybe you are grinding/having TMJ?  may want your dentist to check on that as you prep for surgery. 

Surgery during winter break sounds smart.  Does your surgical team have lots of experience?  that can be huge factor in outcome and post op issues.   And the more fit you are going in, the easier the recovery process.

[Crazycat]

CD,

  The symptoms you describe are much like what I experienced during a two-year period before my diagnosis and surgery.
Thinking back, I remember the distress I would experience whenever I was in an enclosed, wide-open space, such as a department store or supermarket. It is hard to describe what I was feeling; it was like a kind of disorientation. I remember constantly complaining about it and especially to people I would run into in the store. Before I was officially diagnosed, I knew what was ailing me was inner ear-related.

  It is interesting that the particular type of distress and disorientation I had been plagued with for so long went away after my surgery. Ironically, relief was brought by total deafness and shrill tinnitus. The disorientation of confused sound direction that I have now is much less stressful for some reason.

It wasn't until years after my surgery when I remembered what I would go through whenever I set foot in a supermarket or large, enclosed space.  Toward the end of that long period of suffering I went through before my treatment, I was walking around with convex, double-vision with my head feeling like a lead-lined helium balloon, trailing above and from behind me.
I still have the double-vision and leaden, lightheadedness and it's been 11 years now.

I think I must have gone as long as a person could go with an AN before intervention. I also had additional problems compounded by hydrocephalus, requiring two separate surgeries for a shunt before the main event tumor resection one month later. I went through the mill with this. Five weeks in the hospital altogether.

[CDeBrosse]

Thank you for your responses. So this week, I went from 2 ears hearing "under water " to just the tumor side ear now. But I'm having horrid headaches on that side as well. So much so that my next MRI is now moved up from. October 4th to tomorrow morning and another hearing test tomorrow afternoon followed by a Dr visit.  I'm not sure I can wait until December......I'm so over this!

[Crazycat]

That's great they moved the MRI up. So this is a follow-up? I was wondering what the size if the tumor was when it was first diagnosed.

At any rate, the symptoms you're experiencing are very standard. Not sure what kind of treatment you'll have but you'll get through this. Help and relief are on the way!

[Patti]

Let us know how the MRI goes!  I feel for you!  Patti