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ETD to Otosclerosis - What is really wrong with me?
I'll try not to make this very long, but I am looking for some help. I'm a 24 year old audio engineer, I work with music and audio in the entertainment industry for a living. About a year ago, I noticed I started getting a slight sensitivity and echo in my right ear. After a few weeks of it not going away, I went to the doctor and he recommended to see an ENT in that it might be ETD (Eustachian Tube Dysfunction).

We tried anti-biotics, steroids, diuretics... None of that worked. He thought it would be fluid in my ear or a build up pressure. I told him I was also getting a feeling of "fullness" or "pressure." Basically, I'd be able to hear fine for the most part, but if I was driving up a hill my ears would rapidly adjust to the pressure. If I open my jaw, I can "hear" myself and hear air passing through. I was always swallowing and opening my jaw to adjust and regulate the pressure.

The worst part is the earaches, the ear aches come and go, but I can never tell when it is going to hurt or when it is going to be a "bad" day. It just hurts all the time. After awhile, the symptoms went not only from my left ear, but to my right ear. So now a year later, both ears are doing the same thing. I got a CT scan but everything looked normal. For some reason, we never did an audio test, but just recently, I got one done.

The audiologist was confused. Her device and tests showed no fluid, and that I had a mild low frequency hearing loss starting around 500hz. Everything else looks pretty normal.

My doctor realized he misdiagnosed me for ETD, and now says it is more likely Otosclerosis. But my question is, wouldn't that have come up in the CT Scan? Should I get a second opinion? Do an MRI maybe? He told me to start taking Fluorical to see if that helps, he said there is no side affect but I can imagine fluoride to be good for you. I don't really know what to do now since he told me there's not a lot we can do now, especially since I don't have health insurance. He says it's "otosclerosis" but I'm still not confident with that. I feel like he's constantly guessing and I'd like some advice from perhaps from people who have gone through the same thing. It worries me that this is my profession and I could face permanent hearing loss.

Any suggestions or past experience would be very helpful. Thank you.
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Hello and hope you are doing well.

As there is absence of fluid in the middle ear, its most likely your symptoms are due to Otosclerosis. It is usually diagnosed by an audiometry and Tympanometry often shows stiffening of the ossicular chain. A CT scan of the temporal bone is specific but insensitive. So, it may not show up sometimes.

Otosclerosis does not have to be treated. It is usually advisable to have a hearing test repeated once a year. Hearing aids too are helpful. Also, to date, the only proposed medical treatment has been sodium fluoride, which is a dietary supplement . This treatment is not widely accepted, and has not been proven to be effective. If the hearing loss worsens then surgical therapy is indicated.

Hope this helped and do keep us posted.
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Looks like my other post didn't go through. I'm curious if there are more accurate scans because I assumed it would've showed up in a CT because he said it looked completely "normal". I can't live with this on a day to day basis because I have an echo, I'm assuming due to the stiffening of the bone which in turn causes reflections but it is strange that it is my left ear too and I hear air passing when my jaw opens. No one can explain to me that so I just have a gut feeling I should see someone else.

Last week I made a decision to go to a specialist at UCLA so I hope my visit there is worthwhile since I'm running pretty low on money :) thanks for your input!
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Hello and hope you are doing well.

Understand your predicament. A CT scan of the temporal bone would have been more specific. And the audiometry is more likely to show a conductive hearing loss. And a tympanometry will show the stiffening of the ossicular chain. With this a diagnosis of Otosclerosis can be made. If severe then surgical correction is needed for the hearing to be restored.

Hope this helped and do keep us posted.
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