General Health Conditions & Rare Disorders Discussions about general health conditions and undiagnosed conditions, including any disorders that may not be separately listed below.


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Old 06-23-2013, 11:06 AM #1
Iwisuhappiness Iwisuhappiness is offline
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Iwisuhappiness Iwisuhappiness is offline
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Default Hi I'm a newbie, do you hear your eye movement, pulse, dizzy, own voice in your head

I am wanting to get the word out to folks who
- hear your pulse constantly in your head
- hear your eye movement in your head
- hear your eyes blink
- dizzy
- vertigo
- unbalance or loose your balance
- loosing focus
- loosing concentration
- fullness in your head
- head pressure
- depressed

No doctors will listen or just put it off as sinusitis, inflammation even thinking you're crazy???

I did and recently diagnosed with Superior and Posterior Canal Dehiscence Syndrome (SCDS). Through a battery of tests, MRI, VEMP, CT and more there were holes found between my brain and inner ear canal.

This syndrome can be caused by a hit to the head, years of bone deterioration, and other reasons including being born with the thinning of the bone or holes.

All ages can have this horrid syndrome. From babies up to all ages of your life.

I just had Middle Fossa Craniology with resurfacing of the bone loss and plugging of the vestibular tubes at Johns Hopkins in Baltimore.

Primary doctors are missing the symptoms to diagnose SCDS. My goal is to spread these symptoms so when a doctor is told you can hear your pulse, your voice, your eyes moving or blinking they don't look at you like you're crazy and rush you out the door.
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Old 06-30-2013, 08:51 PM #2
Hope0 Hope0 is offline
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Default Yes, I have these symptoms also

I suspect I have SCDS also and am scheduled for the VEMP and hearing test in a few week at John Hopkins. Question for you...when did you get the special CT scan? How long did it take to schedule surgery? Are you better?
Any feedback would be greatly appreciated.
Thanks much,
Hope.
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