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Referred by Dr. Google...

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MaureenInNJ:
Well, here I am, scared out of my mind without even knowing what's happening...TRULY the cart before the horse.  I hope you don't mind me posting.

52 y/o female

In February I started to experience what I can only describe as a tightness on the side of my face, sometimes extending to the neck.  At times it was both sides, but mostly on the left.  At the same time my ear became very full.  A twinge of pain here and there, but not much.  I figured an ear infection, doctor said nope.

Went to the dentist, it isn't my teeth.  Had a jaw scan, not my jaw.

Nothing has helped 'unclog' this ear.  Finally got to the ENT.  Ordered allergy tests first and I am 'one of the most allergic people I've ever seen!'  No kidding. 

My left nostril is also congested. Nothing showed in nasal scope.

Went back and met with the neurotologist after completing my hearing test.

He said my hearing was symmetric, normal, and my 'pressure' was good in both ears.  To him, 'that makes an acoustic neuroma a low possibility.' So, take some steroids, add this other nasal spray, return in a month.  If necessary we can do a CT....

Now, I've been reading a lot here and this sounds like a familiar refrain.  'It's allergies, your hearing is good, this is good, take these steroids...'

I get tinnitus here and there, lasts for seconds.  I had 2 dizzy spells in about a month - once in bed when waking up and once when out walking.  Very mild. Nothing for the past couple of weeks.

I'm not aware of any balance issues HOWEVER I've read plenty of posts on that as well and some had no idea until tested that they had a balance issue!

All this particular doctor did is have my raise my shoulders up and down(??), raise my eyebrows, scrunch my nose and tightly shut my eyes.  Then he touched a few parts of my forehead and asked if I could feel it.  (No idea what any of these 'tests' are looking for.) 

IF I was only having this clogged/full ear I might not have myself as frightened as I am now.  It is this tightness.  Not really numb, but odd. It still does extend into the neck at times, I also have pain right under the ear on and off, sometimes in the neck.

I should also mention I have 3 bulging and 2 herniated discs in my neck with mild bilateral neuroforaminal stenosis. I mentioned to the ENT that my physiatrist said some of this could be because of my neck, but the ENT dismissed that entirely.

I'm rambling, sorry.  I'm just very scared.  Like many people I'd never heard of acoustic neuroma until I was googling my symptoms.

One thing I have learned from reading here is that a CT will be fairly useless unless there is a large growth.  SO, if none of this is better I'll clearly need to push for a contrast MRI.  Or I guess find a different doctor.

I'm not due to return until the end of April.  Of course, if I continue to panic I can probably get in sooner.

My husband's diagnosis is..."you're fine, you don't have a tumor."  LOL, he is forever the optimist about everything!  He also has the gift of living in the moment and not "worrying until there is something to worry about."

Sooooo, do I wait this out, see if the steroids do anything at all, or call this week and push the doctor sooner?

I know that no one here can diagnosis anything - IF ONLY!  But I'd love any feedback at all.  On the symptoms, the tests I've had, whether to wait and see if anything helps and keep the end of the month appointment, etc.

Thank you for reading my ramblings!

MarlaB:
I'm having PTSD reading your email.

Unless your doctor has a phone booth nearby and turns into Superman with Xray vision with MRI capabilities...a CT scan is not the best practices way to rule out an AN...At least that's what I surmised from all the ANA stuff I have read. But then, I'm NOT A DOCTOR....

I don't know why ENTs throw steroids and antibiotics on symptoms that they suspect MIGHT be a tumor. I have read that steroids in your system also can influence the MRI.

Don't stop advocating for yourself until you get that clean MRI read by someone experienced in the AN realm, an untrained eye might miss it.)

Best to you. You don't want to be in this club, but we are an awesome bunch of people!!

MaureenInNJ:
Thank you so much for your reply, and sorry for the flashbacks!

I will be seeing a neurologist before the follow up with the ENT and I am so nervous.

I have no idea what to expect at this consultation, but it has to be done.

Guessing there will be some balance tests, etc.? Either way, hopefully the neurologist will order the correct testing and go from there.

But I am not looking forward to it!

Greece Lover:
Maureen,

RELAX. Whatever happens it will be OK!  One reason on here you read stories like yours that always result in the tumor is because people who didn't have a tumor DON'T COME ON HERE! There are lots of things that can cause various symptoms. No need to freak out over what you don't know. (I know it's easier said than done.)

That being said, maybe a second opinion would be a good idea, or at least go back to the Dr. to have her/him explain why the CT instead of the MRI. 

Good luck!

chloes mema:
I was speeding reading thru your post so if I missed this my apologies.

I would insist on an MRI with contrast to finally determine if you do or don't have a AN. 

You have to be your own health advocate!

Good luck.

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