Video Update – What in the world is semi-circular canal dehiscence?!!

JohnsHopkins

Today we’re off from school because I’m on my way to Baltimore — to Johns Hopkins  — for a six month follow up after my 6th ear surgery last year!! (Okay, in reality I’ve had about 15 ear surgeries in my lifetime, but six of those were last year!!). I had a terrible year last year which resulted in my becoming deaf in that ear, but it has a good ending… Today, I thought I’d share my story… and my VERY COOL bionic ear abilities! :)

Ponto-BoneAnchoredHearingAid

I thought I’d try a different format… so without further ado… here is my video story!

Partly, I wanted to create this video because I actually get email from other people who suffer from Superior Semi-Circular Canal Dehiscence and resonate with some of the crazy symptoms I talked about in my posts last year (like this post where I talk about my own voice making my vision blur and making me nauseous!!) .  In general, semi circular canal dehiscence is something that people get from thinning of the bone.  Some of the symptoms I had with my semi circular canal dehiscence included:

  • having continuous ear noises 24/7… jingle bells, zinging, whirring, swishing, Sshhhing…
  • constantly feeling dizzy and out of balance
  • not being able to turn my head without things blurring
  • the horizon jumping up and down out of place
  • being sensitive to outside noise
  • being very sensitive to my own voice — and my own voice making my vision blur and making me nauseous
  • getting sick (throwing up) after being in a noisy environment
  • not being able to go to places that were visually busy (like the grocery store where there are a lot of colors, etc.)
  • eventually the ear noises got so bad that I would have bouts of noise that were *incredibly* intense… like an jet plane landing inside my head.  A couple bouts were so scary… I wondered if something in my head would explode…  Since those happened in the middle of the night usually, I woke my husband up to sit with me in case… well, in case I didn’t make it.  Very, very scary (it still makes me choke up with emotion).

But, for anyone who winds up here from google after looking up “semi-circular canal dehiscence,” please don’t panic!!! Under normal circumstances, people do NOT wind up going deaf, but my case was — strange and unlucky. :)  But I got through it and am happy & healthy on the other side of it all!

That’s just a little bit about my journey last year! I’m glad to be SO much better!!

For anyone in the middle of dealing with symptoms of SSCD, feel free to contact me in the tab above. I know how scary the whole situation is!!

~Liesl

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