Suspected AN - Dizzy for a week consistantly + unilaterial tinnitus / pain

[dontwant2believe]

ive been struggling with my right ear since atleast 2015 with morse code type beeping tinnitus at 1542hz frequency. most recently about late 2017 through 2018 there has been a significant amount of ear pain that changes depending on if i tug my earlobe or move jaw.
also for example if i lay on my right ear on the pillow it feels like theres something inside my ear and that feeling changes depending on jaw movement

now the most worrysome symptom on top of all of this is just the past week i woke up one day completely dizzy as if  I was seasick, rocking back and forth on a boat. This has not stopped since then.  I am persistently 100% dizzy all day long and nauseous . I feel seasick all day long.

I had a CT scan, and an MRI (WITHOUT CONTRAST) sometime in 2016. Both came back normal.

How likely is these issues related to having AN?
my biggest concern is the MRI and cat scan I had in 2016 was done WITHOUT contrast so it is not fully conclusive.

Why would I have unilaterial tinnitus, ear pain, constant vertigo/dizziness, extreme fatigue?

[golfguy49]

Sorry to hear about your troubles.  The initial MRI of my whole head showed nothing as well, but then my doc ordered an MRI of of IAC (internal auditory canal) - a much more detailed look at areas specifically around the ears, and boom, there it was.  Get it with and without contrast, assuming you are not allergic to gadolinium.  Maybe that more detailed MRI should be your next step.  Best of luck to you.

[notaclone13]

Hello and welcome,
All of us here feel your pain. Before you assume the worst, take golfguy’s excellent advice and get another MRI with contrast.  The fact that moving your jaw causes pain could indicate TMJ which is also associated with tinnitus.  Also, dizziness might be due to something as simple as a misplaced calcium crystal. In 2015, I had the worst vertigo attack ever. I could not even move the first day. After 3 weeks of constant dizziness I went to an ENT who noticed I had nystagmus ( jerky eye movement) on the right side and correctly diagnosed me with a misplaced otoconia. They performed an Eppley maneuver to reposition the crystal and I was instantanly cured. I was thoroughly amazed.  The thing is, I likely had the AN at that time, but didn’t know it. The AN did not cause the dizziness I experienced 3 years ago, although it likely exacerbated the problem. No use in worrying about an AN when that may not be the problem.  Your symptoms could be due to something much less complex and easier to fix.

[dontwant2believe]

Sorry to hear about your troubles.  The initial MRI of my whole head showed nothing as well, but then my doc ordered an MRI of of IAC (internal auditory canal) - a much more detailed look at areas specifically around the ears, and boom, there it was.  Get it with and without contrast, assuming you are not allergic to gadolinium.  Maybe that more detailed MRI should be your next step.  Best of luck to you.

Was your initial MRI with contrast or not?

[golfguy49]

The whole head one was with contrast as well, yes.

[dontwant2believe]

The whole head one was with contrast as well, yes.

so before I go in for my next mri I should directly specify MRI CONTRAST IAC?

i need to do the doctors job for them and tell them what to do?
they cant seem to figure out what to do on their own

I just saw my GP today and they said "youve seen 4 ent's, a neurologist, youve had MRI and cat scan (without contrast) and we dont know what to do anymore, you should see a psychologist"

my GP told me that she would book me a psychologist appointment....

like...as If someone can talk me out of being dizzy, hearing tinnitus, having ear pain

i dont understand what this procedure is??

I keep telling them I need MRI contrast especially on IAC but they act like its not that big of a deal and "theres nothing more we can do"
I had to explain to my GP that without contrast the MRI can miss small tumors...
Then I did my bloodwork, waiting for results.
And got prescribed more serc 16mg

that being said I do have an MRI with contrast for Dec 27, but I'm not sure if its specified with IAC?

What should I do next?
I am so dizzy that I cannot drive my car it feels like i've drank 6 beers..

[ANSydney]

My personal belief is to get the diagnostic MRI with gadolinium contrast agent. This assumes you don't have any kidney problem as you need to quickly clear the stuff out of your system.

Subsequent MRI. which are looking at growth, should be done without gadolinium contrast agent. You can still determine growth without contrast. I would also do at least 5 MRIs, 6 months apart (2 years in total) to determine growth. These should be done on the same MRI machine and preferably analysed by the same radiologist. This method also reduced other errors such as where the particular MRI happens to slice the tumor.

Only intervene if there is distinct growth or some other reason.

These are my personal opinions.

[dontwant2believe]

I'm still very offended my GP would refer me to a psychiatrist.

Has anyone experienced anything like that before?
Because the doctor is too bad at their job or unable to diagnose and do proper procedures, I'm mentally ill apparently.

So frustrating...baffling..

[jami]

If your future specialists have previous AN / Vestibular Schwannoma experience, it may help.

The MRI with contrast was the answer for me, a CT did not show much but WITH contrast, even i could see that something was there.

Understanding the root cause is a HUGE milestone -- but the life impacts remain. Hang in there, dontwant2believe. Whatever the root cause is, know you have a community behind you, here.

[dontwant2believe]

any advice on what I should do? ive been waiting since 2013 to be properly diagnosed and rule out AN but all doctors so far are clueless and think MRI without contrast is good enough despite my crazy symptoms

[golfguy49]

Personally, I cannot emphasize enough the importance of getting the special MRI, with contrast, of the IACs.  Without that more specialized MRI, mine never would have been found.  If you just had a general MRI of the whole head, that is not good enough.  When I had my general head MRI, the technician said he was even going to take some "slices" through the IAC and it still did not show up on that MRI.  So if the GP won't listen, skip the GP and go right to an ENT doctor who cares to give more attention to the IAC.

[dontwant2believe]

ok thank you so I have an MRI scheduled for Dec 27 what exactly should I say to my GP / ENT to be forwarded to the MRI team?
I need to make absolutely sure before I go in on Dec 27 that the MRI is for Contrast of the IAC? is that it?

and also as ive said my GP has already started bringing up psychiatrist so my GP already thinks im insane or its some mental problem which is really condescending. How can I get them to get me to proper experienced care instead of this runaround I'm getting?

this is Canada by the way

[Crazycat]

My AN symptoms, i.e., hearing loss, lightheadedness and double vision started around 2000 and developed over a five-year period before I was diagnosed and treated in 2005.

But long before the AN I was afflicted with an inner ear infection in 1983 that resembled what you're describing.  I remember it came on slowly for what seemed like weeks where my vision would slowly roll up and repeat like the slow flickering of an out-of-adjustment horizontal hold on an old television. Then, one day I woke up and the entire room was spinning in a full-blown case of vertigo. It was so bad I actually vomited. It stayed like that for over a week. I had to crawl around it was so bad. I got myself to an emergency room and the doctor told me I had a case of viral vestibulitis. He gave me a dose of Meclazine and sent me on my way. Gradually it eased-up and stopped as viruses always have to run their course and go away in their own time.

 Also, a girl I know lost her hearing in one ear from an inner ear infection. The point being there are other conditions that can mimick the symptoms of an AN. Also, you spoke of having vertigo. I had a huge tumor. With everything I went through with the AN I never once experienced vertigo. As bad as my equilibrium was and with lightheadedness and double vision, it was nothing like I what experienced with that inner ear infection back in '83—the spins.

And yes, you should have another scan with contrast to be sure.

[dontwant2believe]

Now ive found out the radiologist has denied the request for Contrast  so i am getting another MRI without contrast and theres nothing i can do about it

my ENT requested contrast multiple times and the radiologist apparently declined it   NOW WHAT?


Why am i having so much trouble getting a doctor taking this seriously? Does anyone even know what to look for in cases like these? do doctors even know what acoustic neuroma is?

Why would they not give me contrast? whats the reason?
Ive been a month calling back and forth trying to get confirmed with contrast and then I find out the radiologist just declined it...

Why would they do this to me?

[rupert]

I would not think a radiologist has any veto power over a doctor.   They just preform the tests that are ordered by the doctor.  There would be no request for the contrast,  the doctor writes an order and the radiologist preforms the test.   Maybe there is more to the story or just plain confusion between them.  I’m inclined to think that this issue is related to the doctor more than the radiologist.