Newly diagnosed and have questions

[Zan]

Hello Everyone
I am new here. Sorry for the long post, but I added extra detail just in case it is important.   I live in Los Angeles and I am an active, otherwise healthy, 52 year old.
I have had a bit of ringing in the ear for a year or so, but not much.  Other than that, no real hearing issues
A little over a year ago, I was diagnosed with dry eye on my left eye. About that time I noticed that I could not wink that eye, but assumed that it due to inflammation.  At my last appointment, 4 months ago, my eye doctor said that my left eye does not close all the way when I blink and that might be part of the dry eye problem.
About this time, I started having numbness and tingling around my month (also left side) and twitching in my left eyelid.  About a month ago, I started to notice that drinking from a water bottle was difficult, and thought I was just being sloppy. I also could not swish water around my mouth without spilling.
I finally put it all together and realized I had partial facial paralysis. I went to a neurologist that I had seen 5 years ago for some numbness and tingling on my left hand and foot.  He ordered an MRI of head, neck and spine. He also noticed in the exam that I might have hearing loss in my left ear. He also noted balance issues, which I had attributed to getting older.
Within an hour of the MRI, I got a call that I needed to return the next day for an MRI of the IAC.  I had that MRI on Friday.  Today I got a call from my Neurologist saying that I have a small Schwannoma (10mm). He suggested that I call an ENT. I called the Cedar Sinai ENT department, but no one there seemed to know anything about Schwannoma. I made an appointment anyway. I also searched the Cedars' web site and it said to contact a neurosurgeon.  I called an have an appointment for next week.
So I guess that I am just wondering if anyone else has had more facial symptoms than hearing symptoms. 
Also, has anyone else had dry eye issues?
Finally, my facial paralysis issues seem to be getting noticeably worse in a short period of time.  This week I started noticing that drinking from a cup is also hard as is taking soft food from a spoon.  It can also be seen in my face when I am talking. Is it normal for symptoms to change that fast with a tumor that is supposed to be slow growing?
Thanks in advance for your time.

[ANSydney]

Welcome Zan to the club that nobody wants to be a member of, but everyone is friendly.

For a small tumor, you certainly have quiet a few symptoms.

If you speak to an ENT, he would recommend a translabyrinthine approach for your specific tumor. If you talk to a neurosurgeon he will recommend a retrosigmoid/sub-occipital or middle fossa approach for your specific tumor. If you speak to a radiosurgeon, he would recommend radiosurgery for your specific tumor.

It's a pity that your symptoms are so strong, since the size would suggest an observation approach to determine growth rate.

Your facial nerve is more affected than the traditional vestibulocochlear nerve. Why such rapid symptom progression in such a short time is perplexing. Talk to specialist in various areas and perhaps have a follow up MRI in a month or two to see if tumor growth is unusually rapid.

[Zan]

Thank you ANSydney
My neurologist joked today that I  had done the watch and wait phase over the last year, I just didn't know about it.
I will be interested to see if anyone else has had a similar experience.

[LakeErie]

Zan, given the facial weakness to the degree you are experiencing it, you should check on steroid treatment now in my opinion, with an AN it will not get better on its own and likely will progress. Steroids would help right away. Decadron is the steroid of choice for brain tumors. Where are you located? You need a high volume AN treatment physician.
I was told after my GK to begin steroids immediately on first sign of facial weakness, the GK facility even gave me MedrolPack to have on hand. They said to start the steroid before even calling them to report the symptoms. Even though I did start immediately I still have some weakness 5 months later though it is greatly improved. If I were you, I'd check on the advisability of steroid treatment now. Good luck

[Zan]

Thanks LakeErie
I live in Los Angeles and I see from looking around that site that I should probably contact House Clinic.   I think I will send them my MRI and other paperwork and get a phone consult after I meet with the neurosurgeon at Cedars.  I am lucky to be in a place where there are good places for treatment.
I will ask my neurosurgeon about the steroids.   Have you experienced side effects from them?

[LakeErie]

Yes, I did have some of the common side effects, sleep disturbance and increase in serum glucose. But I was only on the Medrol pack for 6 days then 2 weeks on 4mg's a day of decadron, followed by one week of decadron at 2 mg's, then 2 mg's per day every other day for 8 days. Everyone is different, but the side effects to me were nothing compared to the facial weakness had it become worse.
I had facial weakness following retrosigmoid surgery in 2011 but was mild in comparison to my recent experience. Two weeks of decadron cleared up my Grade II weakness in 2011 quickly.

[CHD63]

Hi Zan and welcome to this forum .....

Living in LA, you have two top medical facilities with much experience in treating ANs:  House Ear Clinic and USC Keck Medicine.  You would do well to contact both (both will do free evaluations of your MRI).

Although ANs typically grow slowly, some can have rapid growth spurts.  If yours is already touching the facial nerve, any tiny growth will potentially make your symptoms worse.

Best wishes and keep in touch.

Clarice

[ANSydney]

Hard for a vestibular schwannoma not to be touching the facial nerve!

[Cheryl R]

That is probably because you have a facial neuroma on the facial nerve.     You need to ask any surgeon you see how many of those they have treated.     Surgery can be done by one who has seen many but there may need to have some of the tumor left on the nerve to prevent the nerve being severed.   You would treatment on this as soon as possible to prevent more damage to the nerve.    If it is not actually on the nerve than the tumor is located on another nerve very close and damaging the facial nerve.   My facial neuroma grew to about 2 cm in a year.   I also have NF2 which might also be a reason for the fast growth.   Mine did get severed during surgery but a nerve from by the ear was grafted in at the same time so did get some movement back over time. Once one has facial symptoms things need to be done sooner than later.       
                                                          Cheryl R               
                                                               

[Cheryl R]

I would like to add that in the US, ENTs do not do any surgery for ANs.     It is only a neurosurgeon or neurotologist who do the surgery.    Any ENT in the US has to refer those who need treatment to a higher up specialist.           Many ENTs here do not have a great deal of knowledge about ANs  or is rare to see one.               The specialist who does do surgery may only do certain ones.  My surgeon only does mid fossa  and translab.    Some do the retrosigmoid and translab and not mid fossa.           Main thing is to see one who do ANs on a frequent basis.     Some surgeon believe in radiation also and many do not so then one does have to find a radiation oncologist who is familiar with ANs.                 Not always an easy choice.
                                             Cheryl R

[ANSydney]

Zan, Can I suggests doing regular hearing tests (and telling us the results). Also, start writing down objective measures of your facial nerve symptoms, such as how far your left eye can close, frequency of eye twitching, etc. Talk to doctors about active treatment options. Before doing anything, have a second MRI. 
 

[Zan]

thank  you Cheryl and ANSydney
My plan right now is to meet with the neurosurgeon on Wednesday and the ENT on Thursday. My neurologist ordered a hearing test, and I will have that as soon as I get the order in the mail (hopefully tomorrow). I am happy to share my results.  It will be interesting to see, since I have always suspected that I have some hearing issues on the right side (non AN side).
I am picking up my MRI CDs tomorrow and once I get the hearing test, I will send everything off to House and Keck to get phone consults.  I would have never know about these places or the free phone consult if I had not read it on this web site.  Amazing!

[Zan]

Quick update

I got my MRI copies to take to House and realized that I have a Facial Nerve Schwannoma, not an AN. 
I had a hearing test and it showed very mild high range hearing loss.  The technician said it was in the normal range for my age.
I've tried to do more research on Facial nerve schwannomas, but since they are even more rare, it is tough to find.
I had my first Neurosurgery consult today.  It was at Cedars with Dr. Chu. He is one of the AN specialists.  I was not super impressed.  Any time I asked a question that was specific to facial nerve schwannoma, he answer was "I don't know".  Finally I said "have you ever had a patient with FNS before" and his answer was "no, but I feel confident that there are people on my team who are familiar." 
He also kept saying that it was "likely benign." or "probably benign." but he was not nearly as reassuring as most of what I have read.
Luckily I see Dr. Schwartz at House on Friday. 

[Citiview]

Hi Zan
It's definitely good to consult at House.
The other thing is look up posts from BLW, a member who had a facial nerve schwanomma treated with radiation. He did a lot of research and is a really smart person.
He had a really good result with radiation.
You can search members and see their posts.
It may save you some time in research.
Good luck.

[Zan]

thank you, I will check out BLW's posts. 
The doctor that I saw today recommended radiation eventually, but we should start with watch and wait.   All that was expected and I think House will say the same thing.  Although, the tumor is touching my temporal lobe and I think I read that that they don't like to do radiation if your tumor is touching brain.   I could be wrong about that though.  You read so much, that it gets confusing.