(The above photo is an MRI slice of my head. This picture shows that (a) I do have a brain and (b) that I don’t have a tumor. If you know just where to look, you can see my left and right superior semicircular canals.)
Those who have known me a long time know that for the past 13 years or so, I have had problems with my ears. The primary symptom is something called “autophony” which basically means that I hear the sound of my own voice very loud. I also hear my heartbeat pretty often, as well as – believe it or not – the sound of my eyeballs moving in their sockets when they move back and forth. Weird stuff.
For most of the past 13 years, it’s been an intermittent thing, where these symptoms only happen maybe 5 minutes at a time 2 or 3 times a day. But for the past 2 months my right ear has been doing this non-stop. The exact cause is still unknown.
I’ve been an enigma to something like 3 different doctors now. The first specialist was an ear, nose, and throat (ENT) doctor who gave me steroids and later installed tubes in my ears. Neither thing worked. So I tried acupuncture, which also didn’t help. After that I just gave up for several years.
The second specialist dealt solely with the ear (not the nose and throat). He thought maybe I had something called “endolymphatic hydrops” which is related to Meniere’s disease. But that got ruled out after I went on a very low sodium diet and cut out caffeine for a few months. (I lost something like 15 pounds of water weight, but the ear problems didn’t go away, and the weight came back when I stopped taking the diuretic pills.)
The next theory was that I have “patulous eustachian tube” (PET) which is where your eustachian tube, which normally opens only when you need to equalize air pressure from your ear to the outside world, sticks in the open position. PET causes autophony symptoms, but from what I’ve read from people who have it for sure, I’ve never been totally sure that’s what I have. When I force my eustachian tubes open (by blowing my nose in a certain way, for instance) what I hear is different than what I hear when I’m having the weird ear symptoms.
I did try some nose drops for a while. It was a medicine called Patul-End, and the goal was to irritate the opening from the eustachian tubes into the sinus cavity (back near the throat) so that they would close up. The medicine was terrible, though. Plus it never really seemed to help. So I gave up the quest for another 3 years ago.
Recently, I visited a new audiologist in town, who eventually recommended I see an ear specialist who is a research professor at the CU Medical Center in Aurora. I visited him, and he and his staff have put me through a whole battery of tests, some of which I’ve had before and some of which are totally new and alien to me.
On Monday, I spent the morning at the CU hospital doing a couple more tests (an MRI and a VEMP test, if you want to know the details). This doctor has a new theory, which I hadn’t heard before. He wants to pursue the possibility that I have “superior canal dehiscence syndrome” (SCDS). What is SCDS? Basically, it’s where there’s a hole in the skull bone that holds the brain and keeps it separated from the semicircular canals that give you balance.
So I’ll be going back soon for a head CT, which is about 3 times the resolution of the MRI I had. After I got home from the doctor, I started doing some research online into SCDS and I am very optimistic about this new theory. Why? Because the symptoms that I’ve read about sound to me like they fit what I have more than any other disease I’ve read about so far. However, I don’t have many of the symptoms that are typical of SCDS, so I’m not really sure. We’ll see what the head CT says.
Here are a couple of other old blog articles I made on the topic of my ears: