Could this be Eagles? Newbie from UK

No joke about patients today needing an advocate. That’s where we help each other on this forum. Some members have great experience w/ patient advocacy & have been able to help others here. Some offer great suggestions & information on this forum which help all who read their posts, Some members do both. I am so thankful to have benefitted from this group!

In 2015, I had a cycling accident w/ a head injury (I was a week away from having my 2nd ES surgery). I bring this up because about a month after the accident I began having horrific, mind numbing tinnitus in my left ear (side that still had the styloid). The ENT who did my ES surgeries treated it w/ high dose prednisone & a diuretic which did nothing, so he referred me to “the ear guy” in the practice (ES doc is “the throat guy”). Ear guy told me he thought I had Meniere’s Disease but sent me off for a CT w/ contrast “just to make sure” I didn’t have an acoustic neuroma. Thankfully I didn’t, but in some ways it would have been the better diagnosis. Loud tinnitus & extreme hearing loss are now my constant companions. I refer to my left ear as my “God ear” i.e. it can only hear God’s voice. :grin: Gotta have a sense of humor about these things. But seriously, I do feel there’s a connection somehow to the nerves that were irritated by ES & my version of MD because when my MD symptoms flare I feel a lot of pressure in the left side of my neck. Been trying to figure out who to see to make a connection but am striking out so far. Haven’t been to a neurologist yet so perhaps I should consider that option next.

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Neurologist diagnosed my acoustic. They are well versed in the many tests that can isolate specific cranial nerves.

A

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Thx. Will look into finding a good one.

Sounds like a good idea. Identifying triggers ( symptoms ) helps in discovery. Here’s and example:

When I was diagnosed with an acoustic neuroma, one of the weird symptoms was my inability to hear clearly using the telephone through my left ear I’d be taking doctors orders at night on the phone …writing with my right hand and the phone propped on my left shoulder…left ear. I ALWAYS had to shift to the right ear to understand. Awkward ! BUT here’s the kicker. The sound through the ear buds on my walkman music recorder was clear as a bell in both ears… The Neurologist told me that was a classic acoustic neuroma symptom. It has to do with the mode of frequency transmission via the telephone…( I have no clue really how that works…I can just say, it was true) Another was positional ataxia when I was tired. I always noticed stumbling a bit turning corners quick working night shift.

Keep a journal.

Keep me posted.

Praying for both of us

Weasel

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