Acoustic Neuroma w/ Chiari I Malformation

[stevenbee]

Hello All,

I am new to the forum and really appreciate all of the great posts I've read so far.

I was recently diagnosed (10/01/2021) with a 3mm left AN in the inner auditory canal and advised to "wait-and-watch" by a Houston-based ENT-Neurotologist.  After a 6-month follow-up MRI it was 4mm, with noted "anterior displacement of the canalicular cranial nerve VII/VIII segments" (not sure what that means in terms of my symptoms).  My audiogram in April showed hearing is still excellent in the affected ear.  I don't think I have tinnitus or vertigo-type dizziness.   I do seem to have a mild perpetual dizziness feeling, along with a periodic pressure build-up (fluid?) around my left mastoid bone, which when "swollen" creates increased dizziness, rear-left-side headaches, and sometimes nausea, which can last for several days before ebbing.  Sometimes my whole head just feels "full" of said fluid, which makes me feel dizzy and a little unsteady at times.  I'm wondering if anyone else with AN has experienced this.  I was also diagnosed around the same time with a borderline Chiari I Malformation (3.5mm descent) and have wondered how much this accounts for my headaches/dizziness/nausea as compared to the AN.  All of this has really affected my sleep, my social life, and my work productivity!

Thanks again, I appreciate any feedback!

Steven

[donjehle]

Thanks, Steven, for your first post!  And welcome to the ANA Forums!

I was diagnosed with an AN about a month or two after yours, and mine was initially 4mm.  The ENT and Neurosurgeon both told me to watch and wait.  My 6-month MRI was postponed to the end of this month, so we'll see how much it has grown.  So, I feel a kinship with you!

I also know the feeling of my affected ear feeling full of fluid/pressure, and I, too, have had the loss of balance.  You are fortunate not to have tinnitus and to have excellent hearing.  I had tinnitus from the beginning which was one of the symptoms that caused me to get an MRI in the first place.  And I lost my hearing while watching and waiting.  Now, I'm virtually deaf in my AN affected ear.  I have not had the headaches or nausea.  And that's one of the strange things about acoustic neuromas -- everyone's journey with them is a little different.  Some have much larger tumors with no symptoms.  Others of us have very small tumors with lots of symptoms. 

What did they tell you after your 6-month follow-up MRI?  Are you still watching and waiting, or did they recommend a different treatment strategy?  Keep us posted on how it goes with you!
Don

[stevenbee]

Hi Don, thank you so much for your kind reply and for sharing your experience.  I am very sorry about your hearing loss. 

Rear-left-side headaches and dizziness (significantly impacting my sleep) were what led to my first MRI earlier in 2021 (it was done w/o contrast, so the AN was not initially found).  I kept pestering my PCP (and a different neurologist) to re-order another MRI and "please look again", at which time they ordered it w/ contrast and then of course discovered the AN.  It was initially reported by radiologist as "most likely acoustic neuroma, less likely meningioma", but the ENT Surgeon/Neurotologist confirmed it as AN.

However, due to some other test findings along the way (such as my borderline Chiari I Malformation, which is also rare) as well as some neck/disc issues), I'm not really sure how much the AN is contributing directly to my symptoms.  It's been complicated.  I've been checking into a few other angles for the headaches/dizziness/nausea and may need additional tests like a cerebral angiogram to rule out vascular concerns and possibly a myelogram to rule out a cerebrospinal fluid (CSF) leak, before I would make any big decisions about treatment options for the AN.  Currently working with PCP, Neurologist, and Neurosurgeon on this.  I do have an appointment to discuss the AN 6-month Brain MRI follow-up with the ENT Surgeon/Neurotologist on July 11 (It had gotten delayed because I was focusing on those other angles for a bit.) so I hope to learn more then.  Will keep you posted.

What was your tinnitus like?  Every once in a very long while, I'll hear a low, loud ringing sound that just pops up out of nowhere and lasts for a few seconds before going away, but I have gotten that in both my ears my entire life, although rarely.  However, now, when all is very quiet, I think I might be noticing a super-super-high-pitched *buzz*-type sound in my left ear (which is possibly there all the time, but just barely noticeable in my day-to-day living at this point).  If that is tinnitus, it hasn't affected my overall hearing (at least not yet).  Also, was your fluid/pressure feeling located behind your eardrum?  I don't have that (yet), mine has been located behind my outer ear, right on (and below) the left mastoid bone.  That's the focal point for my dizziness and nausea, but again not sure how much of that is actually from the AN.  I have not experienced the burning tongue you mentioned.

Thanks again Don, and please let us know things go with your follow-up as well!
 
Steven

[donjehle]

Hi Steven,

The small acoustic neuromas are easy for them to miss.  My MRI was done with contrast but the radiologist did not see it.  His report was that everything looked good, and I was rejoicing.  But it was my ENT doctor who looked at the MRI and sent it back to the radiologist and said (as you did), "please look again." Then he finally spotted it.

The challenge for you is determining what is causing your symptoms.  And that is rather complicated.  You have to work with a number of specialists, and hopefully, they can communicate and work together.  It is frustrating to me when they don't and if they don't agree.

My tinnitus is a constant high-pitched sound, but sometimes changes to a buzzing sound, but it's always there.  I have become accustomed to it so most of the time I don't pay any attention to it.  Some people can't ignore it, and some have a hard time sleeping because of it.  The biggest problem I have with my tinnitus is when I go to the audiologist for an audiogram.  I can't hear the high pitched tones because they are very similar to my tinnitus.  I have to concentrate very hard to tell the two apart although the audiologist claims that her tones are a pattern.  She says I can't hear them because I'm deaf in that ear and she might be right.  I sure hear the tinnitus though, and I know that those who have had their auditory nerves severed and cannot hear anything still hear the tinnitus.

My fluid/pressure does seem to be behind my eardrum, not behind my outer ear, like yours.  And my dizziness occurred at times when I did not feel any pressure, so I don't think mine were related as yours are.  But that's the crazy thing about acoustic neuromas -- what affects one person in a certain way doesn't always work the same way with someone else.  So, in your case, your dizziness might very well be connected with your AN and your ear pressure, or it may not be.  It might be connected to a different issue entirely.  I hope the docs can figure it out for you soon!

Best wishes on your journey, Steven!