ANA Discussion Forum

Watch and Wait => For those in the 'watch and wait' status => Topic started by: Coletten on May 16, 2016, 05:18:23 pm

Title: Frustrated
Post by: Coletten on May 16, 2016, 05:18:23 pm
Hi everyone! Glad I found all of you.
I was diagnosed with a 3mm an in my left ear 3 months ago after experiencing severe vertigo and nausea that hasn't subsided. Ent is perplexed since the vng test came back "normal". But that tests the superior vestibular nerve and the an could be on the inferior vestibular nerve....which he agreed. He suggested I may have silent migraines and is having me try topamax. I've never had a migraine in my life but I am 50 sooooo I'm perimenipausal. Repeat Mri tomorrow to see if the an is a fast growing one. I also have the feeling my ear is plugged and occasional tinnitus. But it's the vertigo, imbalance and nausea that is cutting into my lif.
Phew.....this is a lot
Thanks for listening
Colette
Title: Re: Frustrated
Post by: ANGuy on May 17, 2016, 07:49:03 pm
I don't know why your ent is perplexed, your symptoms are right in line with the rest of us.  You have a tumor on your vestibular nerve, you have vestibular symptoms.  I just don't see the mystery on this one.

As for the misery of your symptoms, yeah, I see that.  FWIW, at some point, they will subside.  They can some and go, but someday, the nerve will cease to function and your brain will adjust and the nausea and dizzyness will go away for good.  In the meantime, there are drugs that work real well for the symptoms for most people.  The downside is drowsiness. 

You might want to find a new ENT that can help you find a pharmacological solution rather than to be standing there rubbing his chin wondering why you are miserable.
Title: Re: Frustrated
Post by: arizonajack on May 17, 2016, 07:52:34 pm

You might want to find a new ENT

Perhaps a neurotologist with a lot of experience treating victims of acoustic neuromas.
Title: Re: Frustrated
Post by: Coletten on May 29, 2016, 02:44:54 pm
Have an appointment with a new dr with lots of experience treating an's. Thanks
Title: Re: Frustrated
Post by: ppg01080 on June 01, 2016, 06:27:08 am
The first neurosurgeon I met with asked me if I had an ENT. I asked him if I needed one. His response was no. I was diagnosed through my GP when I failed a hearing screening and a subsequent MRI showed the tumor. I went for a second opinion and I'm glad I did. My middle fossa surgery was last Thursday. I saw my ENT every day I was in the hospital.
Title: Re: Frustrated
Post by: Notanotherthing on June 05, 2016, 11:26:47 am
I'll tell you, I get that ALL the time from docs. I have been told sway & stumble balance problems & nausea simply are not from my AN. This is from docs that have seen maybe 4 patients with one in 15 years. When I went to a major teaching hospital in a large city for something else, that neurologist rolled her eyes & said "of course it does!!!"
Title: Re: Frustrated
Post by: Coletten on June 05, 2016, 12:34:55 pm
Ppg, how big was your neuroma? How are you doing now after the surgery? Hope all is well!

Notanotherthing, I am finding that out, simply frustrating....thanks.
Title: Re: Frustrated
Post by: ppg01080 on June 05, 2016, 09:57:36 pm
Coletten, I am doing rather well after my surgery. The first night was nausea and pain. I spent 4 days in ICU because they didn't have a bed on the neuro floor. I am so glad it is behind me. My staples come out this Friday. I didn't anticipate the double vision. I will find out the measurements of the tumor at my next appointment. I won't know about my hearing until 7/8.