Author Topic: AN or Vestibular Neuritis? The doctor today sure didn't have a clue!  (Read 10932 times)

It is what it is

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Re: AN or Vestibular Neuritis? The doctor today sure didn't have a clue!
« Reply #15 on: October 15, 2012, 08:03:27 am »
I agree with several of the posts above to do a consultation with HEI.  The research supports receiving treatment from surgeons with the most experience with these particular tumors.  Please keep us updated.

 Karen
.7cm, left side AN , Tinnitus, Hearing preserved, Middle Fossa 8/1/12 at HEI, Drs Friedman and Schwartz, Sharing your story is extremely helpful to me.

Pajamas

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Re: AN or Vestibular Neuritis? The doctor today sure didn't have a clue!
« Reply #16 on: October 18, 2012, 10:25:24 pm »
Dr. Frazee at UCLA took one look at my scan and was 100% certain that I had an AN. I mentioned the proposed "vestibular inflammation" by the other doctor I saw (Dr. Duma at Hoag) and he was thoroughly baffled by that diagnosis.

Anyway, it's been awhile since I've been here but you know, I've been riding a roller coaster. Dr. Frazee DID agree that my presenting symptoms were not the typical AN symptoms and that it could be possible that I was experiencing this dizziness and vertigo because of something else. He didn't want to just cut my head open to remove the AN asap if it was necessary to find another culprit. Obviously, the AN would have to be dealt with at some point but not so urgently if my symptoms were from MAV for instance, or even Meneiers disease (though even more rare for someone my age).

Long story short, I did the hearing test, the balance test, the medications for someone who would have MAV and the conclusive answer is that the AN is causing my symptoms! That little biotch knocked me into a wall the other day and left me with an egg sized bruise on my head.

My hearing in the right ear is at the highest end of the normal range and the hearing in my left ear is at the lowest end of the normal range. Therefore, not much hearing loss and technically normal!
My balance test confirmed a severely weakened left vestibular system.
The medication they gave me to try (in case I had MAV) did absolutely nothing, therefore proving MAV was not the issue.

So, my retrosigmoid endoscopic resection is scheduled at UCLA for November 2, 2012. Can't wait to get this "mutha" out!

J


Irvine, CA ~ Female ~ 32
10mm x 5mm x 6mm AN Left Side
Diagnosed: 9/19/12
Removed: 11/7/12
* Retrosigmoid Endoscopic w/Dr. John Frazee @ UCLA

It is what it is

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Re: AN or Vestibular Neuritis? The doctor today sure didn't have a clue!
« Reply #17 on: October 19, 2012, 06:09:43 am »
It is scary what can happen when we go to doctors who do not specialize in these tumors, especially when they don't recognize they need to refer us to doctors who do.  My thoughts will be with you through surgery.  Please keep us updated. 

Karen
.7cm, left side AN , Tinnitus, Hearing preserved, Middle Fossa 8/1/12 at HEI, Drs Friedman and Schwartz, Sharing your story is extremely helpful to me.

geexploitation

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Re: AN or Vestibular Neuritis? The doctor today sure didn't have a clue!
« Reply #18 on: October 20, 2012, 11:11:26 am »
Wonderful! I'm glad you got a second opinion and some testing that made sense. (That's why doctors should do these tests and not dismiss symptoms!) I had a similar experience with testing. My hearing was normal, my balance was normal, but when I got a test that measured the time it took for signals to pass through my cranial nerves -- lo and behold, the tumor showed up clear as day. The right test makes all the difference.

Good luck in the run-up to your surgery. Take as much time as you can for yourself. If you don't know what to expect at the hospital, solicit opinions and advice (take earplugs and a sleeping mask!). Also, let us know how your procedure goes -- there's a discussion going about endoscopic procedures already in another part of the forums, so I'm sure people will be interested.
=========================
41 mm x 24 mm x 28 mm probable AN diagnosed 1/10/2012.
Surgically diagnosed 7/9/2012 as TRIGEMINAL schwannoma and removed via retrosigmoid at MGH in Boston, MA by Drs. Barker and McKenna.

 


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