Facial Nerve Schwannoma/Neuroma

[snowbaby]

I was recently diagnosed with a Facial Nerve Schwannoma/Neuroma.  I am 37 years old, living in NYC.  Feel like I have no where to turn for support or additional information with regards to my Facial Nerve Neuroma.  Being that is so rare (estimated 500 cases per year), there just aren't many of us out there.  Any help in finding fellow FN people...would be appreciated!!

Thanks!

Ali

Hi Ali...I, too have/had a facial nerve neuroma...just had surgery to remove a large portion of it on February 9, 2013.  It was a success, dr was able to get 90% of it with no ill effects!  Waiting on results from follow up MRI to see how its looking.  I'm in TX, and went with Dr. Yoav Hahn at Dallas Ear Institute.  Hope all goes well with your research, stay positive!

[chronswfe]

I am a 46 year old female diagnosed with a facial neuroma in 2005. My tumor was at the geniculate ganglion left side. I had symptoms of a swooshing sound in my ear, feeling off balance and severe ear pain. I had surgery in May 2006 at UAMS in Little Rock Arkansas. I have House Brackman score of 2 but was a 4 post op. I used b complex vitamins and facial massage and stimulation by a speech/language pathologist. I have recently been diagnosed with a recurrent tumor at the same spot and its 5mm. Trying to decide if surgery is an option I want right now. There is not much on FN on the forums.

[nftwoed]

Hi;
   well, in general, radiation generally followed surgery and vice versa. seems either way you may have some temporary ( 2 or 3 yrs. ) facial nerve weakness, but, the motor nerve is resilient and able to regenerate. what does the pathologist think?

[RubesBYU]

Hey all,

New to the forum as of today.  I was diagnosed with a FNS back in 2008.  A biopsy confirmed the diagnosis (most painful thing ever). 

But luckily for me, I have no symptoms with my facial muscles and only minor hearing loss in my left ear (even though my wife says I don't listen/can't hear anything  )

Dr. Friedman has been great and he has taken a "let's watch it approach.  I was 27 when I first was diagnosed and so far so good.  I def. feel it has grown but I have had no other symptoms. 

Good luck.  Nice to see this forum as when I was diagnosed there was virtually nothing on-line about the subject. 

[SColeman]

Hi all,

I am having surgery this week for a facial nerve neuroma that is approximately 29 mm.  I do not have any hearing on the right side where it is, but I do not have facial paralysis.  My surgeons in Houston, TX are planning to reduce the tumor and leave the facial nerve intact.  I am nervous about the craniotomy.  I will keep you posted.
 

[herewego25]

Hello,

I was just diagnosed with a  facial schwannoma, I am 25 and it is just under and inch in size. it was found after an ear surgeon thought it was a cyst and tried to remove it. It had eaten through my ear canal. I was wondering if anyone had words of advice or found a surgeon that they really liked and would highly recommend. I live in Colorado but am very willing to travel to get to a surgeon who is comfortable and skilled in this situation. I was also wondering what my recovery will look like?

Thank you

[jeninla]

Herewego25,

I would check with the surgeons (Slattery/Schwartz) at House Ear Institute in Los Angeles.  They are very experienced and skilled at these type of surgeries.  I just had surgery there last week and they were able to remove my AN, and preserve my hearing and facial nerves through retro sig.  I didn't have facial schwannoma so I cannot say how different the recovery will be from AN but I'm sure others can speak of that.

Good luck!