afraid and desperately worried i have an acoustic neuroma

[dontwant2believe]

i've had tinnitus for awhile now, in both ears, since maybe 2010 at earliest. not sure how it started but i remember one day hearing ringing in both ears.

over time (5ish years) its subdued to a low rumbling in both ears and that was good, i was feeling happy about being free from the ringing.

the concerning part is a few months ago, i woke up one morning with random new 'morse code/singing/bird chirping/fluttering' low frequency (1450hz) tinnitus in my RIGHT ear only!!!! and it's loud, i hear it pretty much everywhere I go. it's like the volume is constantly going up and down per SECOND. very annoying and debilitating

this, accompanied with 'ear fullness' that i've been experiencing in my right ear for atleast a year now, as well as noticing that my right ear has been slightly less clear and hears less than my left ear, noticed that symptom about a year and a half ago. i've had a handful of hearing tests trying to figure out my tinnitus, and it's been shown that my right ear has a slight dip (not sure, they said it was very subtle)

It seems like it has only gotten worse, since then, though. the area around my right ear feels 'hot' and 'full' also there is a slight sensation of facial numbness when i compare touching my right cheek and left cheek...


Since this new ringing sound in my right ear only, and the fullness, i've been wondering why this would randomly happen, and my research has led me to acoustic neuroma,...

let me also say my dentist has suspected TMJ issues in the past, and I wear a mouth guard at night to help with biting/grinding of my jaw. (they suspected I have tinnitus because of TMJ issues ,but i don't know anymore)


Since all of this new information, and comparing my symptoms with acoustic neuroma, i'm desperately afraid and scared that I could have a tumor... music is my life and I cannot afford to lose ANY hearing, as i'm an already depressed and anxious person, I can't imagine life after finding this out...

anyway I went to my GP and she ordered a CT scan, and I recently had that done complete with contrast dye. I am waiting for the results..

If CT scan shows nothing, should I be worried, and want an MRI? I've read CT scan can sometimes not show AN's.

Any advice is appreciated.

[ppg01080]

It is better to know and move forward. I was diagnosed in 9/15 with a 7mm AN with symptoms like tinnitus, vertigo, hearing loss and balance issues. I was diagnosed after an employment physical where I failed the hearing screening. I have been proactive in my treatment. I currently see a vestibular therapist for my balance.
Good luck with your search for answers. I found that I had symptoms that I ignored but now know they are related to the tumor.
Patty

[dontwant2believe]

ct scan came back completely normal

how likely is it that something like this gets missed on a CT scan with contrast?

going to go ahead and try to push for the mri with contrast next ENT appointment. I need to completely rule this out.

[CHD63]

Hi dontwant2believe .....

That is good news that your CT scan is completely normal.  While a CT scan can miss a small AN, it will usually show a large one, just not as clearly as an MRI with contrast.

While it is unlikely you have an AN, you need to be fully satisfied with an accurate diagnosis of what is causing your symptoms.  There are many other diagnoses that could cause the symptoms you are having.  If I were you, I would certainly thoroughly question my ENT on the next visit to determine other testing, as well as answers as to what else could be causing my symptoms.

Many thoughts and prayers.  Let us know what you find out.  It is very helpful to other patients in this pre-diagnosis stage to know what your diagnosis ultimately is.

Clarice

[john1455]

When I had symptoms, my PCP also ordered a CT scan although I felt a MRI was more appropriate and questioned him about it. Long story short - the CT scan was normal. A MRI taken after I saw a neurologist a couple months later showed that I had an AN. So yes, CT scans can miss ANs and mine was medium size.

Tinnitus can come from many things and many TMJ sufferers have tinnitus (I was a TMJ specialist when I was still in private practice). That was also the most difficult symptom to eliminate even after the TMJ disorder was corrected.

[PaulW]

My AN was 10mm x 5mm x5mm and my CT scan came back as possible Acoustic Neuroma. That triggered the MRI and the positive diagnosis.
Some quite small ones can be found on CT Scans

[Blw]

You have to have the contrast. Also, find an ENT who can do a full work up. It is about 4 hours of testing, some of it likely for padding the bill, but they do everything--sit in a spinning chair, water in your ear, measure ear pressure, tilt your and jerk your head while they follow eye movement, balance testing, hearing tests, voice recognition, pure tone, etc. In fact, look for an ear clinic, as they will more likely have all the equipment. But most important is the MRI with contrast--the dye is called gadolinium. There are other types of growth that can also effect the ear that need to be ruled out, but get a thorough workup at a clinic.

[areles]

ct scan came back completely normal

how likely is it that something like this gets missed on a CT scan with contrast?

going to go ahead and try to push for the mri with contrast next ENT appointment. I need to completely rule this out.

i think it's probably a positive that the contrast CT came back normal, but i also agree with your intention to push for the mri with contrast.  were it me, i would indeed want it COMPLETELY ruled out.

thinking good thoughts for you - hopefully you'll get the MRI ordered, and it will set your mind at ease.