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SSCD Superior Semicircular Canal Dehiscence

#1

My vertigo started Aug 2015. My first ENT referred me to have a VNG - VNG came back w/ possible SSCD. They sent me for a CT scan - it’s the only way to verify or rule it out and referred me to a neurotologist 100 miles away. I had been going to physical therapy for 2.5 months at this point. Waited for a month to see the neurotologist. He said that they did the CT scan at the incorrect angle and that my symptoms were all over the place and he wasn’t going to re-order the CT b/c even if he saw a hole, he didn’t believe that is what was causing my dizziness and it was too risky of a surgery and that I would still be dizzy afterwards.
In the mean time, I finally got in to see a neurologist (my PCP originally referred me to a neurologist and it took 3 months to get my 1st appointment) - I can’t remember now why he referred me to the ENT afterwards and I was able to get into the ENT much quicker - tinnitus maybe? My neurologist tells me he doesn’t know why he’s seeing me for vertigo - it’s not a central nervous system issue, but he’ll treat me for the migraines/facial spasms. I see him a few more times while he tries different meds, and I think he gets sick of my ENT not doing anything for me except the one VNG test and refers me to a neurotologist in my town.
When I called that office, they have me see an ENT first because he can see me quicker, order all the tests and if he can’t figure it out, then I see the neurotologist. So, another yucky VNG, ABR, ECOG, fistula and MRI. ABR and VNG come back abnormal, so this ENT refers me to his neurotologist which I saw today.
First off, let me say, I feel like this guy was prepared - he knew my information before he walked in the door. He wasn’t reading my chart or questionnaire that I filled out in the waiting room while I’m trying to talk to him. Secondly, he said SSCD is too big of an issue to leave hanging out there not to have verified or ruled out by a CT… HALLELUJAH!!! I am so happy right now!! It has always been in the back of my head, well what if it is - why would the VNG test show that if it’s not? Why do sounds make me dizzy? Why do I have like superb hearing? I don’t feel like I’ve always had superb hearing… but then again, sounds didn’t make me dizzy before… Am I going to have to keep going to doctor’s until I can convince another one to do a CT at the correct angle? How long is that going to take (8 months, 8 days apparently…) I just felt like it was unresolved and even if it’s not SSCD, at least it will give me peace of mind that it’s now truly ruled out…