New diagnosis, daily vertigo; Advice for which doctor?

[akhilgulati]

Hi everyone,

I'm 36, and I got diagnosed only a week ago with a left AN 0.7cm after having vertigo symptoms for 4-6 weeks with an MRI diagnosis. Normal hearing for now. Feeling overwhelmed, and happy to find this forum. Read a lot of great tips in here! i so admire everyone's commitment to post and reply in here, long after treatments, etc.

I'm having symptoms of bad vertigo that then cause headaches, and it happens a few times a day, everyday. Therefore wait and watch is not really an approach for me. It seems Middle Fossa is the obvious choice for me due to size of tumor, being entirely in the auditory canal, not affecting hearing yet, and with daily symptoms that bother me.

I got an initial opinion at U of Michigan with Dr. Thompson and Telian who also recommended this approach (I live in Michigan, suburban detroit).
Was wondering if anyone else knows data on some of the other top places specifically for the Middle fossa surgery (how many per year, etc), and am willing to travel. I emailed and talked to Dr. Gantz on the phone at U of Iowa. Also will be sending my MRI and vestibular testing to House clinic in LA and Keck USC in LA.

I'm sure this post is repetitive, and i've tried to read much on the forums, but i admit, the vertigo and headaches make it really hard for me to stare at the computer screen for any prolonged time right now.

Thank you guys so much in advance. It's a lot to take in!

Akhil

[ANSydney]

Akhil, your situation is rather unique. Debilitating vertigo and headaches, but no hearing loss. You may want to research central compensation of vestibular system.

Here's a article I found after a quick search https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3096243/ . There are probably much better articles.

For the aforementioned article, here's an interesting quote, "Patients may present with episodic or positional vertigo, disequilibrium, tinnitus, and usually asymmetric hearing loss. Early in the disease, when the tumor is small, patients complain of dizziness, hearing loss, and tinnitus, due to compression of the vestibulocochlear nerve. The slow growth often allows for central compensation, alleviating vertigo."

[akhilgulati]

Thank you guys for the replies...

yes it's been a whirlwind. And researching and learning about the vertigo has been surprising. I'm hoping that definitely improves after surgery.

I've talked to a few places, still waiting to hear final recs from House and Iowa.

[ANSydney]

Have you considered vestibular therapy before treatment? If this works, treatment will not be required.

[ANSydney]

I'm going to speculate that your balance will be worse after surgery, guaranteed. The vestibular nerve is cut so you will have to relearn (central compensation) using just one (the opposite ear) vestibular system.

The "good" thing is that the affected ear won't be sending waving signals anymore after surgery so although after surgery things will be worse, they'll get better. (Some even inject something to kill off the affected vestibular system before surgery, so you relearn before surgery - but then why are you having surgery!)

If you can live with your symptoms it would be better than getting a 1" hole drilled through 8 mm (1/3") of skull with all its associated risks.

[alabamajane]

Akhil,
Sounds like you are doing your due diligence and getting several opinions. That's good.

Symptoms are a very good reason to move forward with treatment regardless of hearing loss. If your symptoms are affecting your daily life,, you can not always wait.

You may not experience vertigo or headaches after surgery,, you will most likely experience balance problems until your brain compensates,  but not necessarily vertigo which is much worse. Many of us do not experience headaches.

Once you hear back from the other doctors, you will have a better course of action I'm sure.
Best of luck,,
Jane

[Cheryl R]

I do not feel it is right for another person on this forum to tell another that it is better to live with ones symptoms than have a surgery.      That person can have their view on they feel about surgery but if they have not had surgery has no real good knowledge on how it does feel post op or how another person may do.      There are so many variables with each person on tumor location,size and how it affects the nerves by it.  Also how well compensation has already been working.           I realize that the person did say speculates about his own view but still can not say for sure what the post op will be for another.         I have never regretted having been thru 3 tumors and surgeries.                I also never had headaches,dizziness or vertigo but some post op balance issues which  never realized at first when walking inside but did show once walked outside.    But this is my own experience!                         Cheryl R

[alabamajane]

I agree Cheryl and have said numerous times that this is a very personal decision that only we can make. Just because someone is "more scared of surgery than the tumor itself" ( as he has stated on another thread)  , is no reason to recommend that another patient should avoid surgery.

Every patient has their own personal reasons for treatment or no treatment,, it is not our place to sway someone,,just my thoughts

[jeanhomer]

New to some of this information what is vestibular therepy.  thank you

[ANSydney]

http://vestibular.org/understanding-vestibular-disorder/treatment/treatment-detail-page