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With these symptoms, could I possibly *not* have an acoustic neuroma?

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Jill_S:
Newbie here.

I am a 51 y. o, diagnosed with unilateral high-frequency sudden sensorineural hearing loss about 2 1/2.weeks ago. The hearing in my right ear is almost perfect. Since I am a musician and a birder, they tested beyond 8,000 hz, all the way up to 12,000 hz. In my right ear, I heard tones at 12,000 hz at 10 DB. The hearing in my left ear is normal all the way up to just before 4,000 hz, but then drops off steeply into moderate-severe, severe, and profound loss. I had 100% speech recognition in both ears. My ENT, while not actually saying it, implied that I was "lucky," and that as far as sudden hearing loss goes, I was in pretty good shape.

At the consult, he mentioned that he would normally be required to order an MRI to rule out other posssible diagnoses (didn't mention AN by name, but I'm sure that's what he was thinking), but since my sudden hearing loss didn't fit the classic criteria (at least 30 DB loss across 3 consecutive standard frequencies - i.e. The results at 12,000 hz do not "count" for the official diagnosis, even if they showed a dramatic asymmetry in my case) he wasn't going to order it.

At the same time, he also only spent about 30 seconds questioning me about relevant health history. I mentioned that for quite some time now I had been having problems understanding conversations in loud spaces. He didn't comment on that one way or the other. He asked me no questions about balance or whether or not I felt like the hearing problems I've subjectively had for a while we're one-sided.

He gave me the standard tapering course of Prednisone and suggested that I would likely see at least some recovery. But, no, I have not seen any. Or, I see a little, then notice it slides back down again.

So, in desperation this weekend, I started doing my own research into other possible causes of my hearing loss and was frankly dismayed to see how well my sometimes subtle but long-term pattern of symptoms matches those shown by sufferers of AN. No matter that I received a 100% in speech recognition in my exam, I know I struggle in noisy environments. I know it is always me, not my husband who needs to crank up the volume of the TV. I also suddenly remembered that at one point two years ago, I noticed that when I sang in a live space, I sounded louder and a little weirder on my left side. Now I'm thinking that that bizarre loudness was already a paradoxical sign of unilateral hearing loss, in the form of "recruitment."

Then there are the balance issues. The ENT probably didn't ask me about them because I checked "No" for balance problems on their medical history form. And I checked: "No," because, you know, I can stand and walk and I don't fall down thank you very much! However, this weekend when I started thinking about it some more (while reading about AN), I realized that I have indeed been having issues, but dealing with them by avoiding activities, working harder to focus more or compensating In some other way. Examples:

Had major difficulty attempting to go down an escalator with one hand on a large, heavy suitcase, a second hand for a smaller bag and no third hand to hold on to the handrail. I kept feeling like the large suitcase was pulling me over, forward and down and I wouldn't be able to keep myself from toppling. I eventually gave up and asked another traveler to help me w/ the bags.

When I bird on very uneven terrain, I feel like I need to lean against something, else I will topple downhill.

Over the past year or so, I've developed the unfortunate habit of not making clean passes through doorways and hitting the doorframe instead. One day I actually wrote down in my to-do list: "Do not walk into walls today!!"

Then, there is the issue of strange sensations in my left cheek and upper and lower lips -- a little tingly, crawly, maybe a little numb, a little coldness. I've felt this on and off for about ten years. However in the last month it seems to have gotten worse.

All together I think these symptoms look suspicious. This morning I called the ENT back and requested a diagnostic MRI w/ gladolinium contrast. While I was composing this post, the office called back saying yes, they would have the imaging center call me and set something up within the week. Now I am just waiting for their call. I have done all I can do at the moment, including probably way, way too much anticipatory research into treatments options and outcomes.

So, really there is nothing I can do except clear my mind of the matter in the short term and try to have a nice, happy, carefree week anyway. And here, finally, is where I ask anyone here who has the time and imagination and expertise to spare to help me do two things:

1) Convince me that I don't necessary have an AN -- that all these symptoms add up to something else, or shouldn't be added together. Could I really still have idiopathic sudden sensorineural hearing loss with this? Maybe the facial tingling is due to previous bad dental work? Withdrawal or side effects from Prednisone? Maybe the balance problems are just due to aging? Maybe most people have problems going down escalators when they loaded down with bags and can't hold the hand rail? Doesn't everybody walk into a wall now and then?

2) Since I am too much of a realist to believe the stuff above (unless I get some help), maybe you can convince me that I will not necessarily turn out to have a large or relatively fast-growing AN. I am concerned that it will be because I have facial sensation issues and I read that the AN has to grow out of the ear canal and press on the trigeminal nerve for this to happen. Which would mean fairly large, no? And with this sudden hearing loss, fairly aggressive? But on the other hand, my hearing on the left side is still fine for speech in most circumstances and the tinnitus I have is very mild. If the AN were large enough to touch the trigeminal nerve, wouldn't it have already destroyed most of the hearing on that side? Wouldn't I have more pronounced balance issues?

CHD63:
Hi Jill_S .....

Whether you ultimately have an acoustic neuroma or not, you are welcome to gather further information here in the meantime.  The ANAUSA site is a wonderful source of accurate information.

That being said ..... thank you for the comprehensive background on your particular situation.  A couple of things come to mind in your story:  1) as you have already surmised, there are many other conditions that can mimic the symptoms of an AN 2) as a musician, you are much more keenly aware of your own body, especially hearing and 3) 51 is far from being old enough to chalk up your symptoms to aging.

You are absolutely correct to insist upon an MRI with contrast, given your history and symptoms.  Please try to not over-analyze things until you have the results (I no ..... easier said, than done!).

Many thoughts and prayers and please let us know what you find out.

Clarice

arizonajack:
All I can say is that symptoms of an AN (like what you describe) can be gradual and partial.

Get an MRI with contrast ASAP.

You'd be foolish not to.

jaqiday:
My symptoms were similar.  I was diagnosed in Feb this year, I was 58. (just turned 59) Facial mouth numbness, my eye felt weird and irritating. I was losing my balance and would bump into walls in my house. I had tinnitus for years but noticed my hearing was diminishing.  What sent me to the dr was a headache that lasted over a month. Alone each symptom wasn't much. Add them all up?  Now it's looking like I had an AN. I went to my GP who referred me to ENT and also ordered the MRI. They both insisted it was rare and I didn't have one. I knew something wasn't right.
 
I had the MRI with contrast and the GP called me within an hour. I had a 3.2 AN pressing on my brainstem. 

Some things to consider:
Trust your gut, you know your body.
Get the MRi done and go from there.
While it's very stressful waiting and wondering, keep in mind if you do have an an, you will now know and will get it treated.
Size and symptoms do not necessarily go hand in hand. Small/large ANs can cause much trouble in one person and none in another.

Good luck and keep us posted.

Jill_S:
Yes, I'm definitely getting the MRI. Still waiting for the imaging center to call, though. They said sometime today.

"Size and symptoms do not necessarily go hand in hand. Small/large ANs can cause much trouble in one person and none in another." Ah ... there you go!  :) Very helpful!

Surprisingly, I'm finding that for the first time in forever I actually want to thoroughly clean the entire house. (I mean, WTF? I hate to clean!) I've just discovered that our back room had some wonderfully dirty window sills that definitely need attention. Great! I suppose I just need to exert control in some way at the moment.

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