Facial Nerve Schwannoma/Neuroma

[snowbaby]

Hi all, new to this forum, recently diagnosed with a 17 mm facial nerve schwannoma that is extending up and compressing my temporal lobe, hence, neuro says surgery is impending.  Wondering if anyone has this issue as well, as info on the FNS is hard to find.  I'm already experiencing some facial paralysis, and hearing loss, tinnitus, whooshing in the right ear, as well as balance, eye issues, headaches as well as thinking I was just losing my mind for awhile, now I know it's just the tumor affecting my temporal lobe! ; )   Probably looking at surgery within the next month or so, before end of Feb...neuro is recommending Middle Fossa approach and partial removal to try and save the facial nerve function - and mentioned a titanium plate or mesh to replace the chunk of skull they remove!  Anyone have any insight to that, wondering what side affects I could experience from the plate, mesh, etc...on top of everything else!   Thanks for any info!

[leapyrtwins]

Hi, snowbaby -

I had an acoustic neuroma, but there are several on the Forum who had facial nerve schwannomas.  I think Priscilla (msmaggie) had a facial nerve neuroma, but I'm not positive.  If you search on "facial nerve neuroma" you might find some posts that will be helpful.

During my AN surgery I had titanium mesh and a titanium plate "installed" in my skull and I haven't had any issues with either.  I also have a BAHA implant - which is also titanium.  The nice thing about titanium is that you can have it in your head and still have MRIs (it's non-magnetic) and you can go through airport security without setting off the metal detectors.

Best of luck with your surgery,

Jan

[Jim Scott]

Hi, snowbaby ~

The Middle Fossa surgical approach has a good success rate in terms of preserving facial nerve and hearing functions.  The titanium plate is commonly used  - I have one - and, as Jan indicated, should not pose any problems, assuming the surgeon is experienced and skilled with the procedure, as I'm sure he is.  6 years post-surgery, I'm unaware of the plate being there except for a very slight difference in sensitivity in the area of my skull where the plate was installed.  Occasionally, headaches can be a post-op complication but I underwent a 9-hour debulking surgery (Retrosigmoid approach) and did not experience post-op headaches (or pre-op headaches, for that matter).  Hopefully, headaches will not be a post-op issue for you.

Please try to update us when you have a firm date for the surgery.  Thanks. 

Jim    

[Cheryl R]

I think Priscilla had a meningioma.                      Cheryl R

[Cheryl R]

Snowbaby,   I had a facial neuroma surgery in 2006.        My surgeon just puts the bone back as every one has their own protocol on how they do things.        My surgoen was also one who told me ahead that if the nerve was severed then he would graft in some nerve from by the ear at the same time.        This did end up happening and I did after time get movement back so look ok but not normal smile.   Several surgeons don't remove all the tumor and do as yours has said.         Recovery otherwise is the same as regular AN surgery and will depend some on what damage it has done to the other nerves all so close together there.                   Some drs then may recommend radiation later if do have more growth.                 Has your dr said how many FN's he has done?     it is not a common tumor so many have not had to do very many of these.       Are you in the US?                    I would not wait any longer than you  are now planning for the surgery.             I hope it goes well for you with relief from some of what you are experiencing now.        I was just starting to get some facial droop when mine was found.     
           Hope we can be of help here for whatever you need.                          Cheryl R

[snowbaby]

Thanks all for your replies, very good info.  Hard to find much online the facial nerve tumors.  Good to hear info from others with similar surgical experiences though. It originally started with a whooshing sound in my ear that just wouldn't go away, my primary care doc said it was just allergies and gave steroids, but after the meds the whooshing came back so he sent me to an ENT who recommended an MRI, saying it could be three things - tumor, MS or menieres.  So after MRI, he referred me to the neurosurgeon/otoloryntologist (sp) I'm seeing now....so have met with him a few times, now meeting his surgical partner next week, while still going to meet another neuro as well next week for another opinion.  My doc has not done many facial nerve neuromas, as he says "you just don't see these"...but has done thousands of acoustic neuromas, meningiomas, etc, which he says the surgical approach is the same.  His partner would actually be the one resecting the actual tumor, as he "has done more skull based tumor surgeries than anyone".  So, we will see what we think of him next week.  However, he did tell me with the partial resection the surgery time is "normally" shorter (2-4) hours, hospital stay is shorter (1-3) days and recovery is shorter (could be as little as two -three weeks)...which just seems crazy!  But, he said everyone is different and there is no set recovery time for this type of surgery, we just have to wait and see how my body does.  And, he has said we could still have complications such as the facial palsy, hearing loss and other issues that I'm already experiencing even if all goes 100%, again, we just have to wait and see.  I had a previous MRI from 2009 for migraines that he reviewed as well and the tumor was not there at that time...so, it's grown pretty rapidly in 3 years to be 17 mm now.  I will keep you all posted as we go further.  Thanks much!

[snowbaby]

Hi all, just wanted to send a quick update...haven't posted in awhile...had my surgery for facial nerve neuroma on February 8, 2013.  Dr's say it was a success..he was able to remove 90% of tumor with no more hearing loss, facial paralysis and the ringing/swishing/pressure in my ear is gone!!  I am very excited.  We will be watch and wait from now on to see if the remnant grows further, but right now, all is good!!

[ewchisek]

So happy everything went great! Can I ask how did your dr diagnose it a facial nerve tumor? Did he ever say why or how he knew it was a Facial nerve tumor? My dr all along said I had an acoustic neuroma, yet I had ZERO hearing loss. I did have ear pain, dizziness and headaches. Either way when they got in there they saw the tumor wrapped around my facial nerve, hence a facial nerve tumor. So they took my hearing and left me with facial paralysis. I feel like I was misdiagnosed! And if I would of known otherwise I would of had other options.
Anyone's input would be nice to hear.

[Cheryl R]

You don't know it is a facial nerve tumor until they get in there.     The nerves are so tiny and close together that you can't say for sure on the MRI.    They can guess it is might be if having facial symptoms before the surgery.      Plus this is not common.         I was starting to have some droop when had mine which is why Dr thought it might be.         I know that yes if we knew ahead for sure then could make sure had experienced surgeon or if would go with radiation if was ok in ones case.         I came out ok but not perfect with having the nerve taken from by the ear and grafted in the same time the nerve was severed.       I have been told that there is usually never perfect outcomes with this.                               So it is frustrating about thinking about the what ifs and could I have done better.
                                                                                Cheryl R

[ewchisek]

Thanks Cheryl. I thought that was the case and my neurosurgeon explained it the way you did, but then I kept reading all these posts about facial nerve tumors being diagnosed...I guess I was just the unlucky one who showed zero signs of anything to think it would of been a facial tumor. I continue with the whys and what ifs and trying to blame someone, but in time it shall pass, it has to, right?

[snowbaby]

So happy everything went great! Can I ask how did your dr diagnose it a facial nerve tumor? Did he ever say why or how he knew it was a Facial nerve tumor? My dr all along said I had an acoustic neuroma, yet I had ZERO hearing loss. I did have ear pain, dizziness and headaches. Either way when they got in there they saw the tumor wrapped around my facial nerve, hence a facial nerve tumor. So they took my hearing and left me with facial paralysis. I feel like I was misdiagnosed! And if I would of known otherwise I would of had other options.
Anyone's input would be nice to hear.

ewchisek:
I can't really say what made him say it was for sure facial neuroma, I had an MRI, which he viewed and also had several other neuro's view and then they designated that is was a facial nerve, not acoustic...I did have a small part of the tumor that was going into my AIC, and at the time I was having whooshing in my ear, light facial paralysis and slight hearing loss.  I have had a history of facial paralysis years ago which he thought may have been related to this in its beginning stages.

[Lou]

I had several MRI's with dye and was told mine were both facial nerve,even though my symptoms were the same as acoustic. I guess it depends on the type of mri and the specialists

[nftwoed]

Hi;

   Anatomically, the facial nerve passes through a different part of the mastoid bone into the cerrebellum than the vestibular/auditory, though, at a point and considering size of the area, the nerves appear to lie on top one another. The area the facial nerve passes through ( forgot name ) becomes widened if a tumor is present there, much as the IAC is widened in the presence of a vestibular/acoustic AN. MRI would show this.

[nftwoed]

Hi;
   All 3 nerves are really that close in proximaty.