Today is exactly three weeks after Todd had surgery to fix a rare condition of the inner ear, superior canal dehiscence syndrome (SCDS). Typical symptoms are autophony (hearing your own voice in your head when you speak), vertigo, and balance problems.
I wrote this series to help people out there suffering from this condition who keep getting misdiagnosed or have been told to just live with it. I wrote it for the doctors who have never heard of it (that would be the vast majority of doctors).
Will you please help me spread the news and post a link to this page or share it on social media?
ABC News posted a story about superior canal dehiscence that provides a great introduction to the condition. Wikipedia has a short article, but you may be able to find better information at this Johns Hopkins search page (sorry, I had to change the link; the article is “Clinical Manifestations of Superior Semicircular Canal Dehiscense,” in the Laryngoscope). My first post about my husband’s surgery is here, and Todd’s blog is here.
SCDS Support is an online forum for people who have this condition.
Types of Surgery to Correct SCDS
There are several doctors around the country who treat this condition, and they use two different surgical approaches. The more classic method is to plug the openings to the superior semicircular canal. The second method involves patching, or “resurfacing,” the temporal bone where it has thinned over the canal.
The first method (plugging) destroys the balance functions of the semicircular canal. Though a healthy balance system has built-in redundancy for one missing superior semicircular canal, losing one may cause balance symptoms in those who do not already have them. At the very least, it requires retraining the balance system to compensate for the lost canal.
Todd chose the second method (resurfacing) because it leaves the superior semicircular canal intact. This method is not as widespread, and hasn’t been studied as thoroughly. But its popularity is spreading because it is (at least theoretically) less invasive, with fewer side effects.
Dr. Lloyd Minor of Johns Hopkins University in Baltimore, Maryland, is the one who first described the condition, according to Wikipedia. He uses the plugging method and has performed that surgery more than anyone else in the world. However, Todd told me in January 2010 that Dr. Minor has been promoted to department head and no longer performs the surgery; his partner, Dr. Carey, has taken his place.
Dr. Gerard Gianoli of the Ear and Balance Institute in Baton Rouge, Louisiana, uses the resurfacing technique. He has done that surgery about fifty times.
Thanks and a big kiss to Todd for helping me write this post.