Appt at MEEI-Please help if you can?

[jerseygirl]

I certainly hope that your doctors continue to be stunned. I heard this AN-facial neuroma difference in first symptoms from more than one neurosurgeon, so if yours also believe in it, there is a reason for them to be stunned!

                                          Eve

[Cheryl R]

I only  had a bit of a facial droop for about a month prior to my facial neuroma surgery. My only symptom.  They think it was approx 2 cm.    It had not showed up on the MRI a year before.           My surgeon said there was the chance that was what it was but said he would not know for sure until got in.       The rest is history!                           Cheryl R

[elliemae]

This IS very interesting!  I have a diagnosed AN, which has been treated by proton therapy at MGH (like Laura) due to Dr's opinion that neuroma is on the facial nerve also.  I am also a patient of Dr. McKenna.

I had various hearing and facial symptoms for about 3 years before diagnosis. In 2003, I had a diagnosed BPPV for dizziness and imbalance;  in 2004, I had diagnosed "hemifacial spasms" which got progressively worse over the next few years; in 2005, I started complaining about hearing, and had the BAER test which was "normal" and an MRI with contrast that was misread for the AN (it WAS on there!).  It was finally in 2006, with actual hearing loss, that another MRI pointed out the AN.  In hindsight, I believe all of these other things were symptoms of the tumor.  The facial problems were the worst, until the hearing loss.

Danielle, do ask about the possibility of radiation treatment w/o surgery, or get another opinion (Dr. McKenna is great!).  Both MEEI and MGH Drs told me that they couldn't determine if my tumor was facial w/o surgery - couldn't tell from the MRI.  And because of facial symptoms, thought that radiation treatment, and the proton in particular, would be less harmful to the facial nerve and other areas.  And, since the treatment in Nov/Dec 2008, my facial spasms have decreased markedly - still have them on occasion, and they're different than before, but nothing like the way they were before.

There are different radiation treatments too - I went with the proton because of Dr McKenna's and Dr. Loeffler's recommendations.
Good luck!
Elaine

[inmaine724]

Hi all! Dr Nadol called and told me it is, indeed, the AN that we thought it was originally.  The thought that it might be a facial schwannoma was simply because of the marked decrease in nerve function in my left side of my face, but they said it is just that the AN is pressing on the facial nerve.  He wants me back in a month or so for another scan to check growth and go from there.  I can't believe that I am relieved that it's an AN and not the other.  The schwannoma had no real options for treatment available. Not that the AN will be an easy road should I have to take it, but at least there are options.

So, that's a good thing I think?

Still freaked out about the 56 percent of nerve loss in my left side.  Hoping in the next month that that doesn't get worse.

[lholl36233]

Thanks for the update.  Keep us posted.  Love the picture of you and your family.   

[iluuvpups]

Yes I think you're lucky you don't have a facial neuroma.  It's what I have.  I had no facial symptoms prior to my translab surgery for what was thought to be an AN, so the doctors are wrong if they think they can diagnose based on what symptoms show up first.  I first had balance problems, then lost my hearing.  Good luck on your journey!