Tag Archives: bilateral

Permanent Profound Hearing Loss

I saw Dr. Wiet yesterday for my four-month review. Mostly though, I saw his audiologist. It’s official. My right ear hearing loss is permanent and profound. What I do hear is unuseful and distorted. The tinnitus is likely to stay, too, and has been deemed at the upper end of the moderate range. We talked about neuromonic therapy and cros-aid hearing aids, but at an uninsurable $8,000 price tag for both combined, that ain’t happening any time soon.

He told me to get on with my life. But I still have a lot of “good ear” bilateral SCD symptoms that make my days unpredictable and my weeks uneven. Loud rooms are difficult. Whispers almost impossible. The limbic system of the brain is in a constant stress cycle due to the tinnitus, as the brain creates the sound itself to make up for the loss, but then perceives that sound as a threat, activating the fight or flight stress instincts and causing constant edginess and mental fatigue. I think I’m dealing with all of that pretty well. It’s the hearing that bothers me the most. And worrying about my left ear going bad, too.

I need a new plan. Insurance does at least cover the cognitive rehab, since we’ve met max out-of-pocket, so I’m hopeful about that.

I’m Bilateral!

Yes, I have this stupid problem above both of my ears. Dr. Daniel Lee, of Harvard Medical School and the Massachusetts Eye and Ear Infirmary, confirmed this for me yesterday. Two holes – one on each side, and damage to the tegmen above both ears as well. It’s a royal flush, baby. He then described a phenomenon that often occurs in patients with bilateral Superior Canal Dehiscence known as “unmasking,” wherein one side, usually the worst, is repaired first, but then the other side that is also damaged will finally start showing itself in terms of its unique symptoms. It’ll be like a coming out party for my left side. Yay! We’ll have an unmasking party for my left ear! I’ll send out an Evite. We’ll do potluck.

The good news, if you want to consider it as such, is that he confirmed I’ve got this thing and Dr. Wiet’s read on it is correct. But  (there’s always a complication), he feels that his endoscopy approach, which he pioneered, is the best surgical method given the location of my dehiscence, and this has forced me to consider going to Boston and rescheduling the whole ordeal. I’ve messed up before buying houses and cars, but I don’t want to mess up brain surgery, you know? I’ve got to get this right, because in all likelihood I’ll be doing it twice.