Facial Schwannoma

[michellemonaghan]

Hello!  I'm new to this so....I was told a few weeks ago that I had an AN.  I went to meet my ENT doctor last week and he told me he wanted me to get a CT scan done because he thought I might have a Facial Schwannoma.  I had my CT done and met back up with my ENT dr. yesterday and I do have a FS.  I've tried to search the internet to get information about this condition but it isn't as common as AN.  Has anyone out there heard of FS and if so is there any infomaion that you can give me.  I'm looking for some extra help in making a decision of how I want to have this treated.  Thanks for your time!

Michelle

[Jim Scott]

Hi, Michelle - and welcome, although I'm sorry you have this condition. 

I have heard/read about Facial Schwannoma.  It's a tumor on the 7th cranial nerve - and they are quite rare - but in many ways similar to an acoustic neuroma, as you have probably realized as you researched.  I'm not a doctor and cannot offer you 'medical' advice but I believe that radiation is the more common course of treatment for this kind of benign tumor.  As always there is risk involved (facial paralysis, hearing loss, etc) but that is a constant with any treatment of any tumor in this critical location.  I will advise that you carefully vet the doctor you'll ultimately chose to treat you for this relatively rare condition.  You want to be sure he/she has much experience in the procedure you chose and that you feel confident with him/her.  Please keep us updated and feel free to post any question or comment, any time.  Thanks.

Jim

[michellemonaghan]

Yes, the tumor is on the 7th nerve instead of the 8th like a AN is and the surgery sounds pretty scary.  I am very uncomfortable about the whole situation.  I see Kaiser Dr's and have had very bad experiences with the care given with 2 other surgeries that I've had.  I was given too many different drugs to help out with my pain before surgery and that's why I had a MRI in the first place.  My MRI was read twice and they said everything was normal but when reviewed almost 8 months later they found what they thought was an AN but after my CT scan they said it's a FS.  I'm 35 years old with a husband and 2 kids one of which is about to graduate HS this year.  Trying to decide if I put off treatment until after graduation or get it taken care of right away.  Right now I'm not showing any symptoms but it's hard to tell because I had Bells Palsy and already had damage done.  I'm just trying to find as much information on FS before I decide what I'm going to do.  So if anyone out there can lead me in the right direction I would truly appreciate it.  Thanks!

Michelle

[Cheryl R]

Michelle, there have a few of us on here who have had one.     I have as one of 3 tumors due to having NF2.     The other 2 were ANs.         In thinking, actually it was 5 yrs ago today that had the facial neuroma surgery.       I go to Univ of Iowa and Dr Bruce Gantz.    He is maybe braver than some neurotologists as he will try to remove all the nerve and if does sever the nerve, does a nerve graft from a piece of nerve from by the ear and graft in.     This does take several months before the nerve will start working.     He told me 8 mos and that was about right.     I do not have complete movement but you can see by my profile picture that I look ok with face at rest.    Many other surgeons will remove part of the tumor and then do radiation if it starts growing.     So you could see 3 drs and maybe get 3 opinions.           So do find a dr who has experience with many ANs and also see how many facial neuromas he has done also.                      Good luck with this and know it is not an easy time!         Also MRI's do not tell for sure that it is a facial neuroma until they actually get in and see it.     
                                                         Cheryl R
                                                               

[yardtick]

Hi Michelle,

I'm one of the lucky ones here on this forum to have a rare facial neuroma.  My tumour was debulked almost 5 years ago by accident.  The ENT went in blindly, he thought I had a bulging ear drum and he was going to deflate it and graft a piece of skin from my neck to the ear drum.  Surprise, surprise when he opened me up.  At some point in time I am going to need a nerve graft, but as long as the tumour remains stable I am watching and waiting.  You will find this forum to be a wealth of information, for me it has been a life saver.  I suffer from horrific headaches and facial pain, as a result of nerve damage when I had surgery.  My case isn't typical so do not fret.  Read what you can, walk away when it becomes info over load and ask all the questions you want.  We are not doctors but we have experience.

By the way how big is your tumour?

Anne Marie

[mk]

I have the impression that radiation is generally not recommended for a FS, on the grounds of almost certain damage to the radiated nerve, since it lies in the centrefield of the radiation. Unless fractionated approaches work better. I might be completely wrong on this, you may want to ask the docs at the Cyberknife forum http://www.cyberknife.com/Forum.aspx for an opinion.

Marianna

[michellemonaghan]

Thanks for all the information that has been given.  It's very helpful.  My tumor is .08 x 1.1 x 1.8 cm.  Both the ENT doctor and the Radio-Surgeon suggested that I make a decision of what I want to do within a month.  When I email some questions to my Neurosurgeon his reply to me was that "Facial Schwannomas are exceptionally rare and statistically much less likely".  I don't have very good confidence with these doctors and was wondering if anyone out there knows if you can be referred outside of Kaiser to an institute that specializes in this area?

[kzepol]

Where are you located? I am in San Diego County and have Kaiser. I have had much frustration with them and paid to go to HEI where I saw Dr. House. I have an "intra cochlear" neuroma which is rare and differs from AN. I researched and found Dr. Cueva at Kaiser - very respected in field of AN. I see him Fri to get his take on watch and wait versus surgery. Do as much research to find the experts in your town!!!

[iluuvpups]

Hi, Michelle.  I too have a FS.  I originally got onto this website because I was told I had an AN.  When they went in to do the surgery, the found a FS instead.  They debulked it, but did not remove the whole thing because they would have had to cut my facial nerve causing facial paralysis.  At first they told me that they would do radiation on me a few months later.  Since then, I've done some research and am very concerned about doing that because I'm concerned that would cause facial paralysis.  My doctor says he has done radiation on other FS patients with good results, but I'm not able to find anyone anywhere else who can say that.  So right now, I'm in watch and wait to see if it grows or anymore symptoms arise.

I've found there are at least 5 other FS people on this website.  Hopefully they'll all come out and say hi.  I think I've talked to all of them and most were originally told they had an AN.  Like my case, it was found to be a FS during surgery.  Some have had theirs debulked like myself.  Others had the entire thing removed and the facial nerve cut.  One of the folks had a nerve graft during her initial surgery and over time has regained some facial movement.  Some others have had at least two surgeries - the second (and subsequent) surgery to do a nerve graft or some other procedure to assist with facial movement.

I think you're lucky to have doctors smart enough to have figured out you have a FS before they opened you up.  I've found that the doctors that have done a lot of work with ANs are more likely to be familiar with FS.  My understanding is that there have only ever been around 300 FS's diagnosed since the 1930's.  They're 1 in a million as compared to the 1 in 100,000 for an AN. My recommendation is to look locally for doctors that have worked with a lot of ANs.  I would also get a consult at HEI.  They'll do it for free via phone.  They may also be able to recommend someone closer to you.

Feel free to PM me if you want to chat more offline.  I'm sorry you have a FS, but glad you found us!  --Carol Ann 

[nftwoed]

Hi;

  CK and GK have physical fractionated properties, but not nearly so as the hypofractions used in FSR.
  I'd want to investigate this a little with someone if she can get outside Kaiser.
  One thing about the 3 nerves in close proximity, the auditory is a sensory nerve, so very delicate, same too the vestibular (2). The facial nerve is a motor nerve, so more resilient, but a scalpal nick and one has facial weakness. Sounds like a debulkng case may unfold if this is left to a neurosurgeon/neurotologist team.
  Using the Middle Fossa approach, the facial nerve lies right on top after opening the top of the IAC. That may, or not, be advantageous depending exactly where on the facial nerve the AN is located.
  A delicate situation no matter what! But, one can include a nerve in the central beam area if the radiation is hypofractionated. After all, there exists about 1.5 cm. radiation spray in any AN radiological procedure, except Proton Beam.
   Best wishes, Michelle!


 

I have the impression that radiation is generally not recommended for a FS, on the grounds of almost certain damage to the radiated nerve, since it lies in the centrefield of the radiation. Unless fractionated approaches work better. I might be completely wrong on this, you may want to ask the docs at the Cyberknife forum http://www.cyberknife.com/Forum.aspx for an opinion.

Marianna

[Pruneface]

According to my neurosurgeon, the proper name for an acoustic neuroma is "vestibular schwannoma," after thye areas that it affecting.  Maybe the term will help -- my AN or vestibular schwannoma is attaching to four nerves, which affect facial feeling, walking, hearing, tasting, etc.  You can find info on AN or vestibular schwannoma on the internet.

Pat (Pruneface - a longtime name of endearment, not because I have a droopy face -- which I don't).  

[Jill Marie]

Hi Michelle,  I also had a FS.  I believe I'm the one Carol Ann is referring to when she says one person on the forum had there nerve grafted during surgery.  I won't be a lot of help in deciding what to do as mine was done back in 92 and things have changed a lot since then.  I went to Seattle to have an AN removed but the day before surgery the doctor examined me and said he was pretty sure it was a FS.  He said I wouldn't blink again but my eye would tear, he had it backwards.  At rest my face is fine, I can't smile.  My biggest concern is my eye which I have to use ointment on all the time.  Please keep in mind that everyone is different and as I mentioned times have changed.  I too was 35 when I had my surgery, 2 boys in grade school.  Three years after my surgery I returned to work, quit working to be home with the boys not because of the tumor.  I've been at the same job for 16 years.  What you do will depend on the size etc. of the tumor.  They said they could have waited a bit longer on my surgery but I went a head and had it done, once they got in to remove the tumor they found that it was bigger than they thought and were glad I chose to do the surgery right away.  It will be 20 years next June since my surgery and I'm doing fine, you will be fine too!  Jill

[lyndaviolassi]

Hello everyone,
I also have a FS.  I went in July 1010 to have what they thought was a AN removed.  They could do nothing with the tumor because it is so small (5mm). 
I am pretty certain that my tumor is done growing (hoping), because it hasn't changed hardly at all since first being discovered in 2007.   I have frequent headaches, and facial heaviness.  Occasionally my eye will frequently tear but it always eventually stops.  However, I have noticed some other symptoms that I'm wondering if they are related to my FS.
Do any of you FS patients have an intolerance to alcohol?  Are any of you are prone to fainting every now and then?  I am not a big drinker, never have been.  However, sometimes I will have 2-3 (about once a year).  I seem to tolerate wine ok, but vodka is a definite no-no.   Because I don't drink very often, I'm curious if this intolerance is from my FS or just because my body isn't acclimated to drinking.