I went in today for a follow-up visit with my neuro-otologist, Dr. Hadley, and much to my surprise, my head CT confirmed what he already suspected but that I hadn’t understood: I don’t have otosclerosis, I have superior canal dehiscence syndrome (SCDS).

You’re probably thinking, “Huh?” Apropos enough, that’s what I end up saying a lot of the time (hee hee) because one of the most common symptoms associated with SCDS is low frequency conductive hearing loss. But anyway . . .

The image below is one of over 200 generated from the CT:

The arrow on the left side of the image shows the spot where part of my temporal bone is missing, just above my right superior semicircular canal. You can barely see the gap, but when you consider how small the inner ear is, I guess that’s pretty impressive. Dr. Hadley said mine is one of the largest gaps he’s ever seen. (Uhhh, thanks.)

We presume that I wasn’t born with the gap, since my hearing has gotten progressively worse over the past few years, rather than having just been bad to begin with. But I was probably born with just a sliver of temporal bone separating the superior semicircular canal from intracranial space, and that has presumably eroded over time. Don’t ask me where bone goes when it erodes in your head. I have no idea, and thinking about it kind of weirds me out.

The Wikipedia entry about SCDS lists the following as symptoms associated with the disorder:

• Autophony – person’s own speech or other self-generated noises (e.g. heartbeat, eye movements, creaking joints, chewing) are heard unusually loudly in the affected ear
• Dizziness/ Vertigo/ Chronic Disequilibrium caused by the dysfunction of the superior semicircular canal
• Tullio phenomenon – sound-induced vertigo, disequilibrium or dizziness, nystagmus and oscillopsia
• Pulse-synchronous oscillopsia
• Hyperacusis – the over-sensitivity to sound
• Low-frequency conductive hearing loss
• A feeling of fullness in the affected ear
• Pulsatile Tinnitus
• Brain fog
• Fatigue
• Headache/Migraine

That’s a pretty big list. I mostly deal with the dizziness, low frequency conductive hearing loss, tinnitus and migraine. (I also have fatigue, but I think that for me, that’s more related to iron deficiency than it is to my brain’s inability to deal with constant extraneous signals from my semicircular canal.) Of these, the most disruptive symptom is the hearing loss, but on the plus side, Dr. Hadley says that my low frequency conductive loss is about as bad as it can possibly get as far as being related to this condition – so it probably won’t get any worse in this ear (though they’re going to monitor my hearing yearly, just in case).

“Can’t they fix that?” you ask.

Well, yes. They kind of can. But the fix for this involves removing a piece of your skull, peeling back cranial matter (i.e., the brain) and placing piece of skull where the temporal bone is absent. Anyone who knows me knows I’m not afraid of medical procedures, but this one isn’t really indicated for the level of experiential severity. If my balance starts to get worse (that is, worse than it already is in yoga, haha), then we’ll talk peeling my brain back. ;o)