so apparently the misdiagnosis i received (eustachian tube dysfunction, or trapped fluid behind the eardrum) is extremely common for what turns out to be sensorineural hearing loss (SSNHL).
things i wish i had known:
if you experience a sudden change in hearing, with a feeling of being “blocked up,” in just one ear, go to the doctor ASAP - go to urgent care if you can, but also describe it to an advice nurse or whoever you speak to as “sudden hearing loss”.
symptoms: i woke up one day feeling like i had “stuffy ears” as if i were going to get a cold. i waited a few days but didn’t actually come down with a cold, and my hearing was muffled, sound was very distorted, and i had a kind of roaring sound some of the time. i assumed it was some kind of blockage and called the advice line, who set me up with a video appointment with a primary care doctor, who set up an in-person appointment with a physician’s assistant in a family practice.
move faster than this! tell them you have sudden hearing loss! if it turns out to be something more minor, great, but get them to see you quickly. i know it’s hard to do with the USA’s trash medical “system” but it’s worth it. Sudden sensorineural hearing loss is actually considered an emergency and is often permanent, so don’t take the risk. if they tell you it’s “just” fluid trapped in your ear, try asking for a hearing test just in case - that can distinguish between sensorineural hearing loss and “conductive” hearing loss. There are tuning fork tests your primary care provider might be able to do. if they won’t schedule a hearing test for you within a few days, demand to know why - my insurance’s audiology department was booked out nearly two months, and since my doctor didn’t order one sooner that’s how long i had to wait to get a hearing test.
Sensorineural hearing loss involves your cochlea and/or auditory nerve, and damage to those quickly becomes permanent. Treatment for sudden sensorineural hearing loss is kind of hit or miss anyway, but your BEST chance for treatment is catching it as soon as possible (within 2 weeks, mainly). So if your doctor tries to dismiss you for being worried about it, tell them you’re not comfortable risking permanent damage without being thoroughly tested. Make a fuss about it. By the time I was able to schedule a hearing test, which my doctor said was “optional,” it had been more than two months since my symptoms started - waaaaay out of the treatment window. I kept messaging the PA who diagnosed me and she kept saying “eustachian tube dysfunction can take three months to resolve and an ENT won’t see you until you’ve been on decongestants for 3 months.” I have no idea if she was correct that I had fluid build up, or when that fluid might have drained, but I’m really angry that sensorineural hearing loss was never mentioned or tested for, given that it’s so often permanent.
next steps for me: doing a course of steroids anyway, because i tolerate prednisone okay and at least they can say they tried, even if it’s too little too late. getting an MRI to make sure it’s not a tumor or growth. if the steroids do nothing and the MRI is clear, maybe i have Meniere’s disease, in which case the hearing loss should improve and then recur in episodes that gradually worsen, or it’s permanently like this and anything i can do is just management
tl;dr: don’t be like me. call it “sudden hearing loss” and ask for a diagnostic test that can tell the difference between sensorineural and conductive hearing loss (conductive hearing loss means something wrong with the bones or with your eardrum that “conduct” or transfer the vibrations from the air into your inner ear, where the cochlea and nerve pass it to your brain). If they give you guff, remind them of the short treatment window for sudden sensorineural hearing loss and demand to know if there’s any clinical reason not to try a course of steroid medication, which isn’t a sure bet and has conflicting evidence, but is currently the only real treatment available for SSNHL. There could be reasons for you personally not to do that, but make sure they considered the possibility at all.
feel free to message me to ask about it or get coaching for how to talk to a doctor. this happened to me, and i am not intimidated by doctors, understand a lot of the lingo, and have no medical trauma. i just didn’t know what to ask about, and what the PA diagnosed was what i expected to hear, so i didn’t consider other possibilities (confirmation bias in action)
