Patulous Eustachian Tube Dysfunction

[RobPNW]

Been having ongoing issues with an ear for about a year now after I suffered sudden hearing loss. I've got the typical hearing loss trio of symptoms- lower volume, poor sound clarity and my favorite friend tinnitus. But I have several additional symptoms that are quite maddening.

Internal sound feedback- relentless autophony. I hear my own voice and any other internally generated sounds inside my skull. For example, if I am eating anything crunchy, I can't hear anything in the room. If I adjust my neck, and it "cracks", it literally sounds like a steel rod is breaking in half inside my skull. I have always been able to FEEL when my ears equalize but now I HEAR my ears equalizing. Popping, crackling and crunching all day whenever I swallow, move my jaw much etc.

Heavy pressure/fullness/clogged feeling- with hearing loss, people often feel a sense of pressure in the ear but what I feel basically reaches the level of pain IMO. Not acute pain, probably about a 3 out of 10, that comes and goes during the day with no apparent pattern of behavior that I have noticed. When it gets that way, the only thing that provides any relief is equalizing my ear, and the relief is instant. Unfortunately, it only last a couple minutes and then the pressure comes back.

Anyway, the ENT folks' current theory is some kind of Patulous Eustachian Tube Dysfunction, which from what I read, appears to be a tube that has issues closing properly. The symptoms seems to align with the condition and they did some pressure testing that pointed in that direction. The only issue I have is that my experience when diving and equalizing doesn't make sense to me if that diagnoses is accurate. A few months ago, I went on a dive trip and was able to equalize the ear, but it took a non trivial amount of force using a Valsalva. The other ear opened just fine but the impacted ear took about 2-3 times the force. To me it seems counterintuitive, if I have a condition where the tube isn't CLOSING well, why would it be difficult to OPEN it at depth to relieve pressure? If it was basically stuck open, wouldn't it be equalizing with no effort?

Any thoughts greatly appreciated.

 

[tursiops]

non trivial amount of force using a Valsalva.

Don't do this! Use some other kind of equalizing method, that is less dangerous to your ear!

Middle-Ear Equalization

Middle-ear equalization is a basic and necessary diving skill. Learn about why it's so important, how to do it and some helpful tips to make it effective.

dan.org

How to Equalize

All methods for equalizing your ears are simply ways to open the lower ends of your Eustachian tubes so air can enter. VALSALVA MANEUVER | Pinch Your Nose and Gently […]

world.dan.org

 

[Duke Dive Medicine]

@doctormike

 

[RobPNW]

Hopefully @doctormike has some thoughts to share. Mainly my confusion stems from a lack of medical knowledge of the ET. The ENT thinks I have a disorder where my ET stays abnormally open (PET). But in the last dives, it actually felt MORE difficult to equalize that ear as I descended than it did the other ear. That seems counterintuitive to me. If my ET has a propensity to be open, how can it be more difficult to equalize? I'm kind of playing the devil's advocate here. I do seem to have some of the symptoms of PET but am wondering if the diagnosis makes sense given my experience in the water.

 

[Duke Dive Medicine]

Been having ongoing issues with an ear for about a year now after I suffered sudden hearing loss. I've got the typical hearing loss trio of symptoms- lower volume, poor sound clarity and my favorite friend tinnitus. But I have several additional symptoms that are quite maddening.

Internal sound feedback- relentless autophony. I hear my own voice and any other internally generated sounds inside my skull. For example, if I am eating anything crunchy, I can't hear anything in the room. If I adjust my neck, and it "cracks", it literally sounds like a steel rod is breaking in half inside my skull. I have always been able to FEEL when my ears equalize but now I HEAR my ears equalizing. Popping, crackling and crunching all day whenever I swallow, move my jaw much etc.

Heavy pressure/fullness/clogged feeling- with hearing loss, people often feel a sense of pressure in the ear but what I feel basically reaches the level of pain IMO. Not acute pain, probably about a 3 out of 10, that comes and goes during the day with no apparent pattern of behavior that I have noticed. When it gets that way, the only thing that provides any relief is equalizing my ear, and the relief is instant. Unfortunately, it only last a couple minutes and then the pressure comes back.

Anyway, the ENT folks' current theory is some kind of Patulous Eustachian Tube Dysfunction, which from what I read, appears to be a tube that has issues closing properly. The symptoms seems to align with the condition and they did some pressure testing that pointed in that direction. The only issue I have is that my experience when diving and equalizing doesn't make sense to me if that diagnoses is accurate. A few months ago, I went on a dive trip and was able to equalize the ear, but it took a non trivial amount of force using a Valsalva. The other ear opened just fine but the impacted ear took about 2-3 times the force. To me it seems counterintuitive, if I have a condition where the tube isn't CLOSING well, why would it be difficult to OPEN it at depth to relieve pressure? If it was basically stuck open, wouldn't it be equalizing with no effort?

Any thoughts greatly appreciated.

Rob, did you have any testing or imaging done? What led your ENT team to this presumptive diagnosis?

From what little I know about patulous Eustachian tubes, they're not necessarily stuck open all of the time, they can close intermittently.

Best regards,
DDM

 

[RobPNW]

They don't know for sure what I have. I've seen 3 different doctors in the last year. It started as sudden hearing loss in the upper frequencies with the typical symptoms of lower volume, poor clarity and tinnitus. The current theory is patulous Eustachian tube based on a pressure test in my ear canal along with heavy breathing through a nostril. But it's also based on symptoms that seem to align with the condition, mainly heavy ear pressure, aural fullness and chronic autophony.

They previously thought it may be semicircular canal dehiscence but we strayed from that theory because I have higher frequency loss vice lower frequencies and I don't seem to have sudden pressure related vertigo symptoms. I have not gotten a CT yet to completely rule it out though.

Honestly, the typical hearing loss symptoms are the LEAST annoying symptoms of my ear condition. The ear pressure is over the top and relentless. The only thing that seems to provide relief is equalizing my ear, and the relief is immediate. Unfortunately, it only last a couple minutes and the pressure comes back. The autophony is ridiculous. Not only do I hear my own voice, but I hear every other internally generated sound inside my head/neck area echoing in my skull. Not only do I feel my ears equalize, I hear them equalize. I can vouch for the fact that we swallow about 1,000 times day because I hear popping, crackling and crunching sounds all day. Like I've said before, if I adjust my neck and it cracks, it sounds like a steel rod snapping in half inside my head. That's not hyperbole, it's that dramatic. If I eat crunchy food, I can't hear anything else in the room. The chewing transmits through my teeth into my skull. I also have very heavy sound sensitivity n that ear, which is completely counterintuitive. How can I have lower volume hearing and at the same time be hyper sensitive to certain sounds???

Anyway, they want to install a tube in my ear to relieve some of the pressure feeling but that means no diving and I don't see how it addresses whatever the underlying condition is. The other reason I am reluctant is because when they initially did steroid injections into my middle ear when the hearing loss happened, obviously I had a hole in my ear drum after. With the hole in my drum, I still had the symptoms, so why would putting a tube in be any different?

All I know at this point is this is taking a really significant toll on my mental health at this point. I can't focus on anything and it's emotionally exhausting.

I'm working with the VA to try and get earing aids for the hearing loss at least. That's working at glacier speed but I got an appointment for hearing aid assessment in December at least. When I do that, I will try and get an appointment for my general ear condition as well. I'm just hoping that if I talk to enough doctors, someone will know what's wrong with me. Very frustrating.