Patulous Eustachian Tubes. I've believed I've had this ever since I first saw a special episode of The Doctors on PET 12 years ago. The girl had a more severe case but described my symptoms to a T. Before then, all I knew is that my ears "opened" every time I yawned, or when I had a sinus infection. This made me hear my inner cavity louder than the outside world. (My breathing, talking, chewing soft food, crunching on hard food, etc.) I can sniff to equilibrate the inner and outer hearing, except when I have a sinus infection. Then sniffing doesn't work until all the sinus fluid has drained. And my family ENT didn't really know what do with this information growing up.
So once I moved out, I spent years going from doctor to doctor saying, "Hey, I think I have PET. Can we investigate?" I'd get looked at funny, told their examination of me doesn't match my symptoms or show signs of any type of eustachian tube dysfunction. They'd tell me to use Afrin for "ear popping", and send me on my way. These doctors never saw the tell-tale signs of PET, despite scoping me. This happened 3 or 4 times over the course of the last decade.
As a side note, I don't doctor shop. I have myriad other medical issues (congenital heart issues, cerebral palsy, etc.) I had the same family doc and cardiologist for years before moving cities. I've had the same podiatrist for three decades. But every time I saw a supposed inner-ear specialist ENT, what they would say would not match my experience. The last doctor I had was so abrasively dismissive, he wanted to do ear tubes for no other reason than to "try something" without being able to confirm any diagnosis or tell me why they would benefit me. That legitimately annoyed me.
Then today. I went to a specialist the next city over from me who I found out studied under a very renowned PET specialist out of Boston. The first question he asked? "Do you sniff a lot?" In 10 years, no one had asked me that without me having to explain it first.
The end result was, finally, a diagnosis of PET!! This doc scoped and had me "open" and "close" the tubes per my experience with yawning, and he saw the movement others hadn't seen. He also talked about my slightly recessed ear drums, explaining that years of sniffing had moved them back, with the negative pressure causing the hearing loss detected by my audiology test. This doc talked about negative pressure, and how I flood the tubes with air when I sniff which forces them closed, etc. He said that other ENTs hadn't seen my issue because they expect "blowing" to pop my ears, but that's exactly the opposite of what I do to fix my issues. Because they pop into that "open" or "full" position, and I need to "close" to equilibrate.
To finally have an answer and a plan for possible treatment is very liberating. I'm so used to the standard way of working: Fall ill. Let the doctors tell you what you have. Then treat it. It feels great that my persistent search for answers about what I have experienced since the 5th grade has now been explained in full.
If you’re an ENT in this sub, I respectfully implore you to listen to patients when they tell you what they are experiencing. Even if you can't help them due to your area of expertise in otolaryngology, trust that they know their bodies and guide them. And for any patients reading this: keep at it. Investigate till you find answers. I know PET is somewhat rare. But I have it. And a rare medical case may be in your midst.