Author Topic: Facial Nerve  (Read 1099 times)

ktwa

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Facial Nerve
« on: December 31, 2018, 02:12:00 pm »
Hi, all. New here. My husband had an MRI recently after appointments with audiology and ENT for decreased hearing, pain/fullness in the ear, and ringing. Today, we were told that "something small" lit up on his facial nerve but they are waiting to get a second opinion. I'm worried and confused. He has no facial symptoms, but after a brief google search (I know, I know, I can't help myself!) it seems that facial nerve neuromas can cause hearing issues. Hoping for some guidance on questions we should be asking immediately once we hear back. Should we also pursue a second opinion regardless of this first opinion? Anyone have any other thoughts about this? So grateful for any advice. (Also, my grandmother is also an acoustic neuroma survivor. What are the odds?!)

jami

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Re: Facial Nerve
« Reply #1 on: December 31, 2018, 08:11:29 pm »
Hi KTWA,

Caveat - I am not an expert!

My initial symptoms were all facial, i never had the hearing symptoms (and it turned out to be on my balance nerve). It may be that a facial nerve schwannoma may also present with hearing loss / symptoms. Its a tight space.

There is a great resource re: the questions to ask in the member portal -- of course I seem to have lost my password, but check around there. What i found most helpful when navigating was articulating how anxious I was about it. I had appointments moved up just by calling and expressing my anxiety.

(PS - I have 2 co-workers (large large org) i know of who have had this as well. One of them was my predecessor at work. Pretty surprising isnt it?)
Jami
-----
5/17/18: 2.7 x 2.2 x 2.1cm
8/12/18 right retrosigmoid craniotomy @UNC
8/15/18: 1.0 x 0.4 x 0.4 cm
3/04/19: 1.0 x 0.8 x 0.5 cm
4/23/19 Cyber Knife treatment

Jill Marie

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Re: Facial Nerve
« Reply #2 on: January 01, 2019, 09:56:01 pm »
Hi, 

I had a facial neuroma removed 26 years ago, my hearing loss was what sent me to the doctor.  I would recommend a 2nd opinion just to make sure you're comfortable with your decision on what to do next.  As for questions to ask I'm not much help since it's been so long, so many things have changed.  There are lots of others that have posted about what questions to ask so do some research and also hopefully others will chime in now that the holidays are about wrapped up. 

Just to try and put your mind at ease a bit, I'm retiring in 6 weeks from a job I got 3 years after my surgery, you and your husband will get through this. 

Take Care, Jill
Facial Nerve Neuroma removed 6/15/92 by Dr. Charles Mangham, Seattle Ear Clinic. Deaf/left ear, left eye doesn't water.

ktwa

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Re: Facial Nerve
« Reply #3 on: January 03, 2019, 09:15:37 pm »
So, we got the results and I think I'm more confused than I was before. It says "No identifiable etiology for sensorineural
hearing loss" but goes on to say "Short segment of thickening and mild enhancement along the distal mastoid
segment of the right facial nerve may represent a small incidental schwannoma, likely subclinical."

On one hand, I'm glad that they don't think his MRI is remarkable, but on the other hand, I'm discouraged that we don't have an answer for his symptoms and I'm confused by the fact that they did an MRI to look for something, and they found something, but now they don't think that's it? (Maybe due to size? but it seems from reading the forum that size doesn't necessarily indicate severity.)

Should we get a second opinion? Try to go a different route to figure out his symptoms? Just wait it out for a while? Is there much risk in waiting?

v357139

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Re: Facial Nerve
« Reply #4 on: January 17, 2019, 10:30:55 pm »
ktwa,
Reading the report is not the best way.  What did your doctor say about it?  Several opinions is usually a very good way to go.  You can send your MRI to most of the major centers for a free phone consult.  I sent mine to House.  You want to make sure an experienced surgical team looks at your MRI, and tells you their opinion.  Maybe it's a tumor or maybe it's something less significant.

Let us know how the second opinion goes.  Make sure its an experienced team.
Rich
Dx 2.6 cm Nov 2012, 35% hearing loss.  Grew to 3.5 cm Oct 2013.  Pre-op total hearing loss, left side tongue numb.  Translab Nov 2013 House Clinic.  Post-op no permanent facial or other issues.  Tongue much improved.  Great result!!

 


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