Crooked smile - In watch & wait

[Kat From Indiana]

In W&W and experiencing some hearing loss, lots of rip roaring noise (you could call it tinnitus, but it's so much more) and some balance issues.  Now I look in the mirror and my smile is crooked.  This is new and real. I am not imagining it.  I have read that the facial muscles aren't involved until after treatment.  Anyone else have issues with their face pre-treatment?  Wouldn't you consider this a reason to turn from Watch & Wait and gravitate toward treatment???

[john1455]

Any affect on facial expression (like a crooked smile) usually means the trigeminal nerve is being impacted and this can happen before or after any treatment. But it may not necessarily be an AN that is affecting the trigeminal nerve (other types of tumors can do it too). To answer your question, I would think this is definitely a sign to start thinking seriously about moving towards definitive treatment because as symptoms multiply, they will not likely go away after treatment so the more you accumulate prior to treatment, the more baggage you will have afterwards. That is the greatest danger for those who choose W&W. I unknowingly put myself on W&W which resulted in 70% hearing loss in my right ear. I never had any facial issues, though, just hearing and tinnitus in the beginning and finally balance issues after over 15 years.

[Echo]

When I was first diagnosed with my 1.8cm AN, I had only hearing loss issues.  Within a year of that diagnosis while doing my research on treatment options, and sort of doing a W+W, I developed balance issues, a numbness at the corner of my mouth and the tip of my tongue and facial tremors when I sneezed that ran from my jaw line up to my eye on the AN side. My neurosurgeon told me the trigeminal nerve was starting to be effected.  My hearing did get a bit worse, but I also noticed mild changes to my face.  When I'm tired or having a really wonky day, my right eye becomes more narrow than my left and there is a slight curve upwards towards the right when I smile.  My family notice the slight changes to my face and are able to tell when I'm over tired, however, I don't think it's that noticeable to others at this point. 
At the end of that initial year my AN had grown to to 2.4cm.  Based on the growth and symptom increases I opted to have Gamma Knife.

Now at 6 months post Gamma, my hearing levels have remained the same, but my word recognition has dropped from 70% to 20%.  My balance issues are ongoing some days better than others.  My facial tremors interestingly, disappeared a month prior to my Gamma Knife treatment and have not returned.  The numbness at the side of my mouth disappeared several months ago and the numbness on the tip of my tongue comes and goes but is mostly gone.

Deciding to move forward or not and with which treatment is a very personal and difficult decision.  Each treatment also comes with it's own risks.  Weigh your options carefully.  The more research you do, the more helpful it is in making your decision.

Cathie.

[leapyrtwins]

I'm no expert, but in my opinion, any time you encounter new symptoms or the symptoms you have worsen it's time to do something about your AN.

You don't want things to get worse while you watch & wait; especially because some symptoms may be irreversible the longer you wait.

If it were me I'd seriously start looking into treatment options.

Good luck,

Jan

[Cheryl R]

This means your facial nerve is being involved too.     My facial neuroma started showing symptoms about a month before my MRI apt,   Dr Gantz at Univ of Iowa said it probably was a facial nerve tumor but could not tell for sure until he got in there.  it was and he tried to remove it without severing the nerve but did.  He had told me ahead of time that he would then graft in a piece of nerve from by the ear if it was severed.     I did have to have time before my face improved as knew but do look ok at rest and don't have movement around my eye but am better off than some who have had to go thru more surgery later for the face.       
                                                 Cheryl R

[Kat From Indiana]

I met with the radiologist at Indiana University Hospital in Indianapolis, on Monday of this week.  He recommended Gamma Knife and my gut said, go for it.  They are getting the new Perfection Gamma Knife in August, but I have been noticing more facial and balance issues, so I don't want to wait.  I have waited all week for a call from the scheduler, but nothing yet.  I wonder if it takes a while for Insurance to approve?  I have Anthem.  I am so grateful for all of you in this forum.  Everyone is so helpful and eager to share their experiences.