How to know MAV is not something else

So, I’ve been through much testing. I have had an MRI without contrast, CT Scan, full vestibular work-up with Dr. Hain.

My symptoms have waxed and waned for 8 months. Dr. Hain suggested I had a few mild problems. Right ear imbalance, mild migraine, fluid in left ear (which I believe is gone now) and some slight neck issues (due to the cervical nystagmus observed during testing). He’s given me some recommendations like ping pong for VRT and lifestyle changes to try initially.

My question is: I’ve had headaches originating deep within my left ear. They are always in the same location. This is not normal for me. In addition, I’ve developed hyperacusis and a beeping-type tinnitus on top of a regular constant, buzzing tinnitus. Sometimes, my left ear thumps or twitches on its own, too.

My main problem is obviously dizziness, though. And, although BPPV is gone, I am just unsteady moving my head around too much. I’ve also had some visual disturbances like wavy lines, light sensitivity. If I look up, left or right too quickly, I feel “off”.

I’ve read up on unruptured aneurysm stories, where the annie presses on a nerve and causes vestibular issues like tinnitus, hyperacusis, vertigo, a pressure in the head, etc. The only way to my knowledge, that it can be diagnosed is through an MRI or CT scan, both having contrast. Most of us have not been sent for these tests so how do we really know?

I’ve been to 3 neurologists, 3 ENTs, and Dr. Hain, and none of them have even suggested this. Do you think there are other telltale symptoms? I know they don’t like doing anything with contrast unnecessarily but I am just concerned about the headaches always occurring in the same exact location.

Any thoughts?

The fluid in your ear and the right imbalance are all signs of hydrops. This is enough to cause all your symptoms including the BPPV I suspect. You have ear trouble as per Hain. Hopefully it will calm down. Btw I had stiff neck. You get it from brain trying to hold the head steady when vestibular apparatus is upset. You can calm it by calming the brain with migraine meds. Cervical nystagmus?! I doubt it.

Hain would have recommended MRI if he thought you needed it?

The fluid was in my left middle ear as I was suffering from a cold. That has gone away now. Hain didn’t diagnose hydrops, he just said there was a 2 second left beating nystagmus which indicated a mild right ear imbalance. He mentioned in this test results some cervical nystagmus noted so neck may be a contributing factor.

He didn’t recommend MRI with contrast after I told him my MRI without one was normal.

An ear imbalance is Hydrops. That’s what Hydrops is. More endolymph than there should be. What else could it be? The fluid in your middle ear has come from somewhere. I get it. Inner ear issue again, very possibly.

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I thought the ECog would have to be abnormal as well as audiometry. Also, with hydrops the VHIT would be abnormal also - that’s just what “they” say.

I very much suspect that mild hydrops is difficult to detect. But that’s what an imbalance is.

I have Hydrops and it’s my belief that the pressure can cause perilymph to leak into the middle ear. The tinnitus is absolutely a sign of inner ear over pressure. The pressure builds up after the leakage eases.

There is an emerging MRI test for Hydrops but don’t think it’s in the clinical mainstream.

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I think what Hain meant was right ear imbalance with respect to left. That causes the nystagmus.

What do you mean?

Nystagmus is caused by one ear being weaker than another IOW imbalance.