I went to my ENT today for the results from my ENG. They were normal, which is good, but it's still frustrating because I don't know what's wrong with me. He said that he didn't think this was labyrinthitis but he gave me a diagnosis of vestibular neuronitis, which he then called a "wastebasket diagnosis" because it covers anything they can't pinpoint... He then started talking about sending me to have a consult to start a process of chemically destroying my balance system on one side. I thought that sounded pretty drastic, I wondered if he was trying to scare the dizzy right out of me.
After we talked for awhile he asked me if I wanted a procedure done where he would put a tube in my ear by cutting a hole in the drum and then put steriods right onto the nerve every other week. He said this would possibly solve my problem, but I would rather not have anything invasive done if at all possible. I instead asked if I could have my hearing tested again (my last hearing test in Nov. showed I lost hearing in my right ear, lower register) and maybe get a referral to a neurotologist or some VRT. I got the VRT referral and a hearing test next month, but no dice on the neurotologist... so far. I'm still working on it.
I'm also debating whether or not I should see the neurologist again to discuss the possibility of MAV, the ENT didn't seem to knowledgeable about it.

Has anyone else ever had the tube procedure done or even heard about it?

Whew, I feel like this ear thing is a full time job.
- Cori

Hi Cori--

If he didnt have a true diagnosis, why would he want to do that procedure on you? Is he just guessing, or would that help you for sure? Hmmm...I would probably be getting a second opinion on that one just to be on the safe side ya know? A neuro-oto would be a great idea.

Take Care-
Sherrie

Cori

Those procedures are only done in EXTREME cases, I would not take them lightly and I personally would nt trust anyone who says they dont know whats wrong with you but then suggests these major procedures.

A neuro-otologist is your next call I think xx

Yup,

See a neurotologist. The procedure he's describing is only for people who have tried absolutely everything else with no joy. It's a desperate measure. Destroying your vestibular function on one side is no small thing. I can't believe he's suggesting it when you haven't a) Tried VRT b) Tried migraine drugs, and as CL says, he isn't even that sure of your diagnosis. If you have MAV, then destroying one side of your vestibular system won't help you. In fact it'd be a really bad idea.

I think it's worth reiterating here that ENT's are required to do no further training in the inner ear past the basics. Their speciality is the outer and middle ear. So I say again, see a neurotologist, and possibly your neurologist again.

best,

I def. thought he was suggesting things that were extreme for my symptoms. I hate being dizzy and foggy, but not enough to destroy part of me, especially because it's only been about 5 months. I just wish I didn't have to fight him (and my GP) so hard for all these referrals, but when it comes surgical procedures he's chomping at the bit. I guess some people just want to solve problems the only way they know how.

Thanks for your replies, and thanks to everyone for sharing so much. If I hadn't searched around on this board and found about all my options, which were never suggested by my ENT (including info about seeking out a neuro-oto, VRT, ENG - etc., etc.), I wouldn't be where I am today.

- Cori