SCDS and VHE’s

Semicircular Canal Dehiscence Syndrome was discovered in 1988 by Dr. Minor at John Hopkins Medical Center. It was also there that some of the first surgeries took place to treat the condition, a topic that I review and think about on a daily basis.

SCDS is basically the thinning or complete absence of the part of the temporal bone overlying the superior semicircular canal of the vestibular system. Some people with SCDS have mainly the dizzy symptoms. This include having various types of vertigo induced by noise, also known as the Tullio Effect. Noise, movement and even taking in a busy visual scene can all give the person with SCDS a feeling of becoming dizzy and disoriented. Other people with SCDS experience something called autophony, meaning they hear sounds within their own body.  One news reporter referred to this as “Edgar Allen Poe-like symptoms” and he wasn’t too far off. With these symptoms you hear internal sounds such as your own heartbeat, the swooshing sound of your pulse, the sound of your eyeballs moving in their sockets, and the loud sound of your footsteps from within.  And of course, the sound of your voice as it sounds from the inside of your head, which for me sounds like someone mumbling into a microphone. There are still others with SCDS that have low frequency hearing loss.  I am lucky enough to have dodged the hearing loss symptoms but have made up for it with plenty of vertigo and autophony.

What I’ve discovered is that when you have SCDS it can be a big scary world out there. There are noises everywhere, and the majority of them will bring a wave of dizziness, similar to the sensation of stepping off a Tilt-a-whirl at an amusement park. The noise doesn’t even have to be loud to create this affect.  Sometimes it’s the low hum of people in conversation at a coffee shop or restaurant that slowly brings me to a point of mind-numbing dizziness. During the “before” diagnosis part of my life I tolerated these waves, actually ignored them really, assuming that I was worn down or overtired, and that the sensation would go away if I drank more coffee, like the good Seattlite I am. But now that I know the reality, I no longer feel like toughing it out.  I know the only respite from such situations is to leave the noise behind, and I find myself limiting my exposure to the big loud dizzying world. Every day my world gets narrower and narrower in my effort to protect myself.

This is not good for a mom of two young kids who need to maneuver through mommy life. Because being a mom often means being front and center in the midst of noise and chaos. My fiancé coined the environments that rattle me as “Vestibularly Hostile Environments” or VHE’s for short.  If you are a mom committed to volunteering at your kids school, shuttling kids to sports practices and hosting playdates, VHEs are everywhere.  Your child’s holiday performance is crippling.  Trick or treating in the dark on uneven sidewalks is disarming and driving them to all their sports and educational appointments is downright dangerous.  Your average day is an invisible maze of opportunities to get sideswiped by disequilibrium. You may never fall, but you always feel that you are falling.

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