Progressive Loss, 2 months and counting, what do you think


Gang, thought I would solicit opinions since my ENT team is stumped so far.

I posted briefly here before: On May 28 I first confirmed hearing loss with an audiologist when first experiencing tinnitus–this was maybe a month after I recovered from walking pneumonia. I’ve seen the ENT there multiple times, and he isn’t sure what’s going on. I’m worried about going completely deaf, because during that time I later 1. Had additional loss in the bad ear followed by oral prednisone which 2. Bumped things back up to initial loss level, followed by 3. A separate inflammation of soft tissue in mouth which my family doctor successfully (90%) treated with prednisone then 4. Another hearing loss in bad ear followed by another round of prednisone which 5. Did not bump things back up this time. In fact, just learned today, my hearing is a bit worse than it was pre this round of prednisone, both in the bad ear and now, for the first time, a decline in my good, right ear.

I have an MRI set for next Monday. I also had an ECoG which showed a fluid imbalance in the bad ear, which led to discussions about lower sodium intake and while I’m pursuing that, my last physicals have measured sodium blood levels in the mid- to low range of normal.

My ENT and I have talked about Meniere’s and Hydrops but I have zero vertigo issues. I wonder a little bit about something called Autoimmune Inner Ear Disease, which at least follows the pattern of often showing up with loss in one ear followed by the other, over a period of weeks or months. The mouth-inflammation thing may indicate autoimmune something or other, but my family doctor ran blood tests for that and whatever autoimmune tests she ran–also Lyme–didn’t show anything.

Anyway thought I would solicit reactions to see if anyone had a similar experience and what they ended up learning. If there is any way to rationally assess whether I’m going to lose it all in both ears, that would be good to know too.

Naturally I have follow-up appointments scheduled but so far it’s been Mystery Science Theatre. I’ll post my audiograms separately.



Top one is today, bottom one is May 28.



Middle-Ear issue: notice the change in the response and CC of the Tympanogram.

They think it’s Sensorineural because the BC has dropped with the AC on the worst ear, but there’s a couple of options here. It could have been overmasked during testing which isn’t entirely unlikely - OTOH if your middle ear issue is causing ossicular fixation, you can get SN effects, especially if the footplate of the stapies or the round window are immobilised.



Secondary endolymphatic hydrops doesn’t necessarily come with vertigo.

I do not see a significant decline in your good ear. Results were all within 5 dB, and 125 Hz was not tested previously.



Just wanted to say I appreciate these responses.

I welcome more of course. But thanks you two.


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You just got help from two of the best on the forum.



You might want to think about visiting an ENT. at a specialty hospital like Massachusetts Eye and Ear in Boston or somewhere similar near you. Sometimes it is worth seeking out the best medical care you can possibly get. If you’re worried about total deafness. I’d say this might be one of those times.



Not an ENT…

but been testing ears and fitting hearing aids for 24 years. Most times that I have seen autoimmune loss happen, it is almost always violent and sudden in it’s progression: one day you have hearing, the next day you don’t.

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Much thanks for the additional replies gang.

Obviously I’m not familiar with this field. Regarding Eric’s experience, I don’t know if the initial hearing loss was sudden, that is, over a day–it was the tinnitus that drove me to see the ENT and audiologist and then discovered the hearing loss. I have read elsewhere that one sign of Autoimmune Inner Ear Disease is loss over weeks/months as opposed to days or years.

Separately, an old internist friend of mine said he had been thinking about Meniere’s in my case–as has my ENT–but over his career he couldn’t recall a case where significant vertigo wasn’t involved.

But these thing (and certainly my situation) don’t always fit neatly into a list of symptoms, as Neville noted regarding Hydrops.

Appreciate it everyone.