Facial Nerve Schwannoma

[mvi]

Hello,

Has anyone been diagnosed with a FNS? If so, what were your symptoms prior to diagnosis?

Thank you.

[Jill Marie]

Hi, MVI

I had a Facial Nerve Tumor removed in 1992, I was diagnosed with an AN in May of that year, surgery in June.  I went to the doctor because of my severe hearing loss and prior ear infections.  No facial palsy, no tinnitus, no balance issues prior to surgery.  Feel free to ask more questions.  Jill

Saw this post just after I posted to your previous post.

[mvi]

Hi Jill, thank you so much for responding. I am so confused and anxious about the best treatment options for me. It seems like the more knowledge I gain, the more confused I get. I am having a hard time weighing the pros and cons of having surgery now or watching and waiting. Radiation has not really been discussed as an option for me by either of the two doctors I have seen. On the one hand, having surgery now that my face paralysis has improved so much is positive, because the probability of preserving the facial nerve is higher. If I wait, I am allowing for the possibility of another similar or even worse palsy incident, which would make surgery outcome less hopeful. On the other hand surgery now, even with my improved face, has a high probability of causing damage to my nerve, so I could end up worse than now. My tumor is small, 11mm. The doctors are inclined to diagnose facial and not acoustic based on my symptoms. Other than the face paralysis, which lasted around 5 weeks, I have moderate hearing loss, fullness in the ear, and tinnitus, none of which really bother me that much right now. Was your diagnosis of FN made before or during surgery? How did you decide on which treatment option to take? Hope you are doing well. 

[Jill Marie]

Hello again,

 I was diagnosed with an AN by the ENT in my home town who recommended a surgeon out of town.  I was suppose to have a prior visit with the surgeon but since I lived 5 hours away, had 2 young children and broke my leg and had surgery a month before my tumor surgery we opted for a first time visit with the surgeon the day before my surgery.  The surgeon told me I had a FN at my first visit with him, he did the hearing test then by looking at my face he could see the very beginning of what the tumor was doing to my face.  Perhaps my tumor is bigger so your doctors don't see anything that tells them it's a FN. He said I could wait a while before the surgery but we went ahead with it.  He told me afterwards that it was good thing i didn't wait as the tumor was bigger then it looked in the MRI.  My ENT said the tumor was 1 X 0.5 x 0.5 cm, the surgeon's report doesn't say what it was when removed. 

I went with surgery because no other option was presented to me, ENT said you need surgery and not knowing anything about the tumor and little or no internet information at that time I trusted what my doctor told me.  The only choice I was given was which type of surgery and since my hearing was already 90% gone they went with the surgery that would best preserve my face.

I'm doing fine, I had a nerve graft done during surgery so at rest my face looks normal, I don't smile but I can grin and my eyes and attitude tell people I meet that I'm happy to see them.  I've had some dry eye problems over the years but doing fine now after finding what I call the BEST eye doctor in the U.S. 

I'm retiring in 8 days and looking forward to catching up on things around home, playing with my 2 1/2 year old twin grandsons and going to Alaska for a month.

Yes, trying to figure out what to do now is hard, so many questions so many things you don't know and honestly won't know until after you've made your choice.  No two tumors and situations are the same so the doctors can tell you what might happened but that doesn't mean it will.  I'm no help when it comes to deciding what to do as things have changed so much over the years.  Since your tumor is small it does seem wise to wait a while to do anything but I understand your fear of having facial palsy again.  Keep searching for answers tell you find the one that makes you say, This is it, it feels right!  Good luck and post often.  Jill

[mvi]

Thank you so much for the info. I am happy you are doing well and enjoying life! Best wishes in your retirement.
My tumor is more or less the same as yours; 11mm translates into 1.1cm...I appreciate the advise.

[Jill Marie]

You are very welcome.  Feel free to ask more questions or just vent when needed.  Please keep us updated!  Jill