AN diagnosis due to facial paralysis

[mvi]

Hello to all,

I experienced sudden facial paralysis on 11/18 and was diagnosed with Bell's palsy at the ER. I had a CT scan which was negative. The next day, I followed up with my ENT. Besides the paralysis (no forehead movement, no eye closure, droopy mouth, trouble eating and speaking, etc), I mentioned to my ENT that I had been experiencing full ear and some difficulty hearing on that side. He ordered an MRI and auditive tests to "make sure" it wasn't "something else". My auditive tests showed moderate hearing loss; I do not have any dizzinness or balance issues. The MRI showed a small 12mm tumor in "either the 7th or 8th cranial nerve". My ENT referred me to a specialist locally (I live in Puerto Rico) who diagnosed acoustic neuroma but was perplexed about the facial palsy symptoms, as they are not consistent with acoustic neuroma. He said a facial nerve schwannoma is very rare. He reccommended surgery. I decided to look for a second opinion. I visited with neurologist at the Brigham & Women's Hospital in Boston. The team there was also a bit stunned at the facial palsy. Suggested surgery as well but explained the increased risks of the surgery if the tumor was on the 7th nerve instead of the 8th, as suspected. They wanted to wait at least 3-4 weeks until surgery to see if there were any changes in my face. One month after my initial diagnosis, my face started to improve! I visited again with neurosurgeon in Boston (one month follow up after initial consultation), and he was very happy and surprised to see how my face had improved. Another MRI was performed which showed no change. Based on this, we have now decided to observe and wait. My face has improved almost completely; only some weakness remains. My doctor cannot be sure of the reason of my paralysis and/or the improvement. He thinks a coincidental Bell's palsy and tumor finding would be pretty unbelievable. It has now been one month from my last visit in Boston. My face continues to be better each day. I have moderate deafness and tinnitus; no other symptoms. I am reaching out to ask the members if anyone has had facial palsy as their first symptom of an AN. Thank you for your help!

[golfguy49]

I have not had facial issues with my AN, but my surgeon did put me through a battery of balance and hearing tests that help identify which nerve is affected most and where the tumor is most likely situated.  Supposedly, this helps determine if middle fossa is the best possible surgery option - no surgeon likes to do middle fossa technique and find out only after they get in there that the hearing cannot be saved anyway due to tumor positioning.  If hearing cannot be saved, why risk middle fossa when translab is available as a less risky procedure.  So maybe some of these tests can be done to give some info. on the facial nerve as well?

[mvi]

Very interesting, thank you for sharing. I have not have any testing on my nerves.
Are you considering surgery now?

[golfguy49]

I was diagnosed in March 2018.  Thought I might have surgery after an October 2018 MRI that said my tumor had grown 2mm.  But upon receiving 2nd and 3rd opinions of surgeons who stated different MRI machines "could" cause a margin of error of 2mm, along with my balance improving greatly starting in early December, I have decided to wait and get another MRI in April (on the same machine as last time! and with contrast) to see if there truly is any growth.

[ANSydney]

My personal opinion is that you do not need contrast to measure size differences. Contrast is great for the initial diagnosis, but from then on you can readily measure the tumor without contrast. I've had five MRIs so far and the last three have been without contrast. Both the radiologist and myself have had no trouble doing the measurements.

Also, yes, measurement error is easily 2 mm.

[mvi]

Sydney, do you know anyone here that has been diagnosed with a Facial Nerve Schwannoma?

I am interested to know what were their symptoms prior to diagnosis.

Thank You.

[ANSydney]

There are those on this forum with facial nerve schwannoma, but I don't readily know their usernames. Facial nerve schwannomas are a different beast in the risks go up, so they usually only operate if it is larger than they would for vestibular schwannomas, I think.

How certain are you that it is a facial nerve scwannoma?

[mvi]

My neurosurgeon thinks that it may very possibly be a FN because of my face palsy. He, of course, cannot be 100% certain until I have surgery and he actually sees the tumor. Because of those higher risks, because my tumor is small (12mmx5mmx6mm) and because my symptoms have improved significantly, we have decided to watch and wait. My next MRI is in 5 months. Thanks Sydney for your help.

[notaclone13]

Blw had a facial nerve neuroma. Check his posts.

[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

[PaulW]

Bells Palsy is reasonably common and everything you have said still sounds like Bells Palsy.
Depending on how the MRI was done, High definition T2 weighted MRI's with NO Contrast can detect individual nerves, and can determine whether this is a facial neuroma or AN. Diagnostic Imaging for AN's especially on older machines is often T1 Weighted, with or without contrast. I believe the individual nerves cannot be seen with T1 Weighted images

I wouldn't be rushing into surgery either for such a small tumour... You should consider all options W&W, Radiation, and surgery.

I would certainly be asking if the T2 Scans were done and if the radiologist definitely did the differentiation between an AN and a Facial Schwannoma     

[jami]

Hi MVI,

Not sure i have a lot to add, but i will note that my key symptoms were all facial tingling & numbness, though no paralysis. Turns out the neuroma was hanging out on my balance nerve (that happened so slowly I just though i was getting old and clumsy).

Great advice from all on the thread.

Best wishes!

[mvi]

Thank you!