Claudia,

I live in DMV area.

As imnotcrazy pointed out CT Scan/MRI and all others are pretty much useless and is all based on symptoms. Unfortunately our symptoms can mimic lots of other conditions too.

I have most of the symptoms you all mentioned. My Neurologist (nice guy with holistic approach and not a drug pusher) told me to go for a walk. As you mentioned all that makes me more light-headed. Crowds are a big no-no to me too. I am even trying the BOSE best noise cancelling phone (since ear plugs didn't work and made me more imbalanced) and didn't work that much.

For certain frequencies it helps. So I have to wear and take it out constantly based on the environment. So it is a mess.

If you check out dizziness-and-balance.com they don't highly recommend surgery. My co-worker had true vertigo and had surgery (from dizzydoc at Washington Hospital Center) and good only for 1 year and lost feeling one side of tongue. But she didn't have any terrible symptoms like us. I am willing to lose feeling on one side if only it can cure me.

Even she told me that doc is not a nice doc and rude. I don't know what he expects - just to give our head so he can open it up and patch the ear based on assumptions?

I saw this other doctor (George Town hospital - Jeffrey Kim supposed to be good too) and he did all tests etc., and said I have anxiety. His conclusion is purely based on tests which we know the deal. But He didn't even do any test for tullio's phenomenon.

Get few more opinions but not that many even in a big city. It is a very tough decision to go for a surgery.

I went to a spine and pain doc and now wearing a cervical collar. It does help which is bizarre. So now the problem looks like in neck or ear. Went to many chiros (including upper cervical) and no help. Have you tried any collar? How about any medications like Xanax? I even wear them at night which reduces my headache and dizziness in morning. Now with that I can drive more comfortable. Now I am going after neck before messing up my ear.

If anyone gets any success for this debilitating dizziness, pain etc., please keep posted. I do the same.

Cheers!