Facial Neuroma

[JRD]

Hey guys...

Sorry to write another post so soon.  But I visited a Neurosurgeon and hes diagnosed me with Facial Neuroma (Not AN).   From what i've heard its a pretty rare case.  The tumor is located on a facial nerve.  He's suggested to me that we wait for about 6 months and take another MRI to see if the tumor is growing or not.  If the tumor is growing he'll recommend surgery, but if it isn't he says we can leave it as is. 

I've sent my MRI's to the House and im waiting for a diagnosis from them and i've also sent my results to the Univ. of Pitt to see what they think as well.  Has anyone on this board been diagnosed with Facial Neuroma?  If so maybe you cold tell treatment method and side effects, etc. 

Thanks guys...

[wind6]

Hi JRD, As far as I know you and I are the only two in this group to have a facial neuroma. Mine was found during surgery. What I can tell you is this...my symptoms seem nearly identical to the members that have AN's, that is why I feel comfortable here. I have balance problems, eye dryness, deafness, taste distortion,...everything is about the same for me as it is for most of the others here. I also want you to know that I am recovering very well indeed. All muscles in my face are weak but working now. I am even regaining some of the hearing.
My doctors told me that facial neuromas are very rare but, they are so close to the acoustic nerve that all the things that can happen with AN treatment can also happen with facial neuroma treatment.
I think its great that you are checking this out with House. They are supposed to be the best. I would also encourage you to look into radiation treatments. I am not sure if a facial nerve neuroma can be treated that way. My doctors said with a tumor on the facial nerve, radiation can run a higher risk of permanently radiating the nerve itself. However, I think if I knew then what I know now I would have researched that option in depth.
If I can answer any other questions you have please let me know. I will be more than happy to share my experiences with you.       Sherry

[GM]

JRD,

I tend to agree with Sherry on the radiation appraoch on this one.  Those of us with AN's on our hearing nerves put that facial nerve preservation stuff high on our priority list.  For me I wanted to try and reatain the hearing I had and also felt that I had less potentail facial damage with the radiation approach.  I am part of the 35% crowd where the tumor swelled slightly in reaction to the treatment.  Not to scare you here...just educate you.  I am currently monitoring it and waiting my 2 year interpretation form the University of Virginia Gamma Knife Center.  The military docs (retired military) want to do a MRI every 2 years to monitor it...we'll see.

You didn't mention the size of your tumor, it may be small enough to allow surgery with a good chance of facial nerve preservation via sub-optical or retro-sigmoid approaches if you don't like the "zap" method of radiation.

GM

[Kathleen_Mc]

JRD: Something that should be looked at is where on the facial nerve is the neuroma? You see as it approaches the area of the auditory canel it and the balance and auditory nerves all but touch each other and this is how you might get your "losses", as it grows it could attach onto the other nerves and also when removed the other nerves could be damaged (or as it is radiated etc). I can understand doing to "watch and wait" thing but the larger it gets the more likely this could occur, I would think.
Kathleen

[Sanddollar]

Hello, JRD.

I understand your concerns regarding a facial neuroma.  I was diagnosed last week with AN, but on my last visit was told that a facial neuroma cound not be ruled out. No facial symptoms, but this apparently doesn't rule out the possibility.  I've had an MRI and am going in for a CT scan tomorrow to view the facial nerve as it passes through an opening in the bony part of the skull to see if it looks enlarged (fills the space through which it passes).  I got the impression that we would have more information from the scan, but not a definitive answer about whether the tumor was actually on the facial nerve until the surgery was underway.  My AN is 2cm in length, 1 cm at its widest point.  Do you mind sharing what you were told about how they knew the tumor was on the facial nerve?  So far everything they have not ruled out has become reality, so I am a little worried about this.

Thanks!

[JSC]

Hello,
Re:  Facial Nerve Schwannoma
It is so difficult to find much information on facial nerve schwannomas.   My 19 y/o daughter was
diagnosed with a 2cm facial nerve schwannoma three years ago.  We are taking the wait and see approach. 
I'm anxious to hear how others have fared with the various treatment modalities.
I'm praying for a drug that will shrink these tumors!

[Kilroy1976]

My 19 y/o daughter was
diagnosed with a 2cm facial nerve schwannoma three years ago. We are taking the wait and see approach.

I don't mean to pry, but has the tumor shown any signs of growth in the past three years? Someone else may have a more educated opinion on this, but to me it seems odd that a 2cm tumor in such a young patient would be a "watch and wait" case.

[wind6]

Hi JSC, As you might see from my other posts, I had a facial neuroma too. Right after surgery my face was totally paralyzed....I will tell you, I was scared to death. Even had a time of wishing I had just let it go and not treat it. That would have been a fatal move for me so now I am really grateful that I did have the surgery. After almost seven months of healing time my face is almost back to normal. I personally am with Kilroy on this one. I also wonder why they are saying wait and see if your daughters tumor is 2cm three years ago. She is young and strong. Seems like the sooner its treated the better the chances of a favorable outcome. I was 49 when I went through surgery and I am recovering very well.
 Again, as I stated in my earlier post, I would also thoroughly check out radiation therapy too. I am not sure if the point of origin makes a difference since all of the nerves are so close together anyway. Many people here have had facial nerve involvement and are doing very well also.
 If I can be of any assistance please let me know. Always willing to help in any way I can. Good luck to you and your daughter.  Sherry