Recent diagnosis - facial Nerve Schwannoma

[doogan]

Hi Everyone,

I have recently been introduced to the very frightening world of the facial nerve schwannoma. I was accidently diagnosed in march with what they feel to be a facial nerve schwannoma. I have also heard it referred to as a Facial neuroma but not sure if they are the same thing or actually a different diagnosis at this time. My story goes as follows :  I am 30 years old, and have a genetic heart comdition - for which i had an extensive open heart surgrey in june of '05 for. This was a success and as my recovery progressed i noticed i had a mild Ataxia (imbalance), which was to be expected ( i was put on and taken off bypass a total of 3 times). Anyway about 8 months after the surgrey, i changed PCP's and she decided to do a ct scan in case i had any mild TIA's that were missed during the surgrey with coming off and going on bypass so many times - again a common enough thing to have happen with a surgrey of this nature. Well with the CT scan came the news that i did no thave any strokes or TIA's but it discovered that I had a schwanomma in my temporal bone area on my left side.

I have now seen 2 specialists and both have concluded that my mild imbalance is non related to this and is still a residual effect of the Open heart surgrey - which makes some sense

So, Now i have a signifant tumor in a location which correlates to it being in facial nerve.  The tumor size is about 2.5-3 CM and has erroded some bone structure in there, is pressing against my brain and is starting to protude down into my ear cavity ( I cannnot remember the term for this area). It is also apparently within millimeters of the part of my ear which, when it encroaches on this, will cause permenant deafness.  The other interesting fact is that i have no symptoms at this time.!!!! My hearing is perfect, no facial paralysis and feel fine.

I met with a specialist yesterday and he gave me the options. Wait and watch, radiation and surgrey.  he highly recommeded surgrey for this one as he can still prevent hearing loss. However he made it very clear that i will have fiull facial paralysis, as they will need to cut out the nerve in that area will need a graft and will probabally regain maybe half of my facial movement in 12-18 months.

So that is where is am -  Truly lost, I am not even sure what to do next. I just spent years researching my Heart condition, found the best place in the world (Cleveland Clinic) had a successful surgrey and was feeling great. I was not worried going in for the surgrey as I was comfortable that i had made the best decision. I knew what all the possible outcomes were and how they would affect me. I was prepared

I am in NYC. I saw selesnick yesterday and thought very highly of him. I am seeing Gutin monday as part of a selesnick/gutin approach.

Where is the best place in the country for this?  Who is the top surgeon with best track record? How do i decide?. While i have some time - i may not have much - the one caveat that I am being advised on is that if it grows much more it may kill my hearing - this i want to avoid at all costs. So i need to figure out what i need to do rather soon

what is Facial paralysis lilke, how will it affect me. this i am terrified of. will i be able to keep my job and work? will my speech be affected, will i be able to eat, chew, taste etc.?

Are there any people out here with this exact type of tumor - i know that this board is specifically for AN's , i cannot find any community with support for what i have as of yet.

Thanks for listening/reading, I am sure i will post some more soon.

I woud appreciate any feedback or advice. My email address is puublic so feel free to email me if you wish

thanks

[nannettesea]

Doogan,
Please get other opinions, among them the people at House Ear Clinic in LA. I've never heard of a facial neuroma, only vestibular neuroma.  So other opinions very good to do.  Also get opinion from radiologists.  Even if tumor is on facial nerve, it is likely affecting vestibular nerve which affects balance.

Remember, House people are surgeons, so going to another radiologist with expertise in schwannomas is a good idea.  Phyl in MA can give good recommendation for the northeast.  Check out any thread with ppearl, or I can send you her e-mail address.  She'll probably post to you anyway.

Your tumor sounds unusual (just what you want to hear), so more opinions from experts is very wise.
Good luck, hang in there, this is a great group of people.
Nan

[Cheryl R]

Hi Doogan
 I had surgery in March for a facial neuroma.     I did have the nerve served and a nerve taken from the neck and grafted in.       This was my 2nd AN surgery as had surgery also in 2001 on the same side.   I am unusual in having 2 separate tumors on one side due to having NF2 which is having tumors on both sides but the condition can make existing tumors grow faster or different than regular ANs.             The facial paralysis means no movement of that side of the face and also the eye will not blink or produce tears.        Some of the after effects are no different than for regular AN surgery.      I was deaf on that side from the first surgery.    it is annoying but can be lived with with some adjustments.         I had little trouble with balance issues this time as had went thru that with my first surgery.     I can eat with only some problem of food pocketing on my bad side.    I have some off tastes and weird tastes in my mouth.         I have had no numbness on my face.   I do seem to have enough saliva.   Some after effects can not be predicted ahead as they vary from person to person.     I have no numbness on my tongue but some do.           I have to be diligent with eye care to keep it moist.                I was told of some improvement possible past 8 months but am not counting on anything till actually see it.                  I do sometimes feel like it is harder to talk but that varies from day to day also.                   I was back to work in 2 mos as a nurse part time in a small rural hospital.   I am 54.
If you are able to travel to LA then House Ear Institute is the place to go.       Just make sure any surgeon you would chose has a great amt of experience with AN.     Have you had a MRI with contrast as that is needed for the best visualization.       It may show it is not a facial one.    I was having symptoms of my neuroma prior to surgery.    
 Ã‚         Good luck with your choice of treatment.                     Cheryl R.

[doogan]

hi Cheryl, nannettesea - Thanks for your replies,

Cheryl - In referance to an MRI - I cannot have one, as i have a ICD implanted!!.


thanks

[wind6]

Hi Doogan,
 Mine was a facial neuroma too. You are right about not find much literature about this particular type. What I have found to be true though is that the affects are incredibly similar to an acoustic neuroma.
I also had perfect hearing before surgery. My first really noticeable symptom was facial numbness. Looking back I realized I was having some balance issues too...just thought I was getting a little clumsy as I aged.
After surgery I lost all of my hearing. Some was starting to come back but, all that returned was low frequency..My doctors call is unusable hearing because a hearing aid wont help.
Maybe I was fortunate but, they DID NOT sever my facial nerve. My face was completely paralyzed right after surgery but, has slowly returned to almost normal function now. I say do not accept as gospel that your face "WILL" be permanently paralyzed. More like "it COULD be"! I am a strong believer in holding on to a positive hope for the best outcome. I do believe attitude plays a huge roll in recovery.
I am with the others in here that would tell you to try the House clinic...at least talk to them and get their opinion. As far as radiation...I am lost on that one. I have no idea what the outcome would be for that type of treatment. I myself am looking at that possibility now. (I unfortunately am having a regrowth)
I think you can read about eye problems, taste disturbance, and balance issues because those may be issues you will have to deal with. Research House-Brackmann facial paralysis scale. I was a 6 when I left the hospital...I am now a 2.
As a final thought..I hope you will stay here and find comfort with the members. Even though I am very slightly different in the origin of growth for my tumor, the support and information here has been a lifeline for me. If there is anything you want more info on, please let me know.  Hugz, Sherry

[amymeri]

Hi Doogan

Well what a shock after all you have been through!

I had a 4 cm acoustic neuroma (neuroma and schwanoma are different names for the same thing...tumor on the lining of the nerve cells).  After surgery I experienced facial paralysis and single sided deafness.  The deafness has so far been only mildly annoying although it may be more of a drag when I go back to work.  Having said that, if it IS a problem I will explore the possibility of a BAHA hearing device.

The facial paralysis is a problem, for sure.  Mouth and eye care become a fulltime job for awhile.  I would investigate having a gold implant put in your affected eyelid as this will help eye care tremendously (they can do it during your surgery).  I can talk and eat but had to make adjustments (I use a straw to drink and had to practice saying B. P. M).

Mostly, my self esteem has been affected as I look different.  But now, 3 months after surgery, blinking has become more important  Do lots of research and check out bellspalsy.ws for information on facial nerve paralysis.

A place to check for surgeons in the Northeast is Brigham and Women's with Drs. Black and Day.  My NS also recommended Cedars-Sinai in NYC and Dr. Al-Mefty in Little Rock.

Stick around for lots of good support!  We are with you every step of the way.

Amy

[ppearl214]

Amy,

I attest to Dr. Peter Black (and his protege, Dr. Eliz Claus) at BW... they are my neurosurgeons.  Fantastic team.  Do a google on Peter Black, Neurosurgery for further details of his expertise... rather impressive.

Doogan, I read your story and can't thank you enough for sharing all you have endured.  If you can get to Boston from NYC, another fantastic team here is Barker/Martuza at Mass General Hospital.  They did CrazyKat/Paul's surgery last year.. and I have to say for seeing Paul the couple of times I have.. and for the massive growth he had.... they did a superb job on him!

Regardless of where you choose, please know we rally BIG time around here.. and sending you thoughts and wishes as you go through this journey... just remember, we are all here for you!

Phyllis

[doogan]

I would like to thank everyone for your replies. I really have not been able to focus on research much yet - still somewhat in shock. I am seeing Dr. Gutin this afternoon as part of the selsnick/gutin team surgrey approach.

I am going to post another question in a separate thread - but i will mention it here also - has anyone heard of, or had a debulking/radiation process done. Basically trim down the tumor and then his with radiation to kill the growth. It sounds like a option that may preserve the facial nerve somewhat? however i am very unsure.

thanks again to everyone, I am sure i will have lots of questions that were answered many times already

[Obita]

Welcome Doogan:

Sorry you need to be here but you come to a good site for info.

Did you have a CT with contrast?  I understand why you can't have a MRI (darn it) so I was just wondering if the contrast dye showed the neuroma??

I have read many times where the surgeons go in and find the neuroma on a different nerve than they expected.  It is so tight in the canal that it can be hard to distinguish which nerve it is attached to even with a MRI - thats why no one can predict what long term post-op problems they will have (if any).  Some tumors pop right out and some are sticky and real hard to get out.

I had AN surgery.  I'm sure lots of people will write in about their radiation experiences/knowledge soon.

Hang in there and best of luck to you,  Kathy

[doogan]

hi kathy - Yes i have had 2 scans with contrast - however it is still tough to clearly see. the difficult part if this is all of the "what if's" and "Maybe's" and for me - walking up to an unknown..........

thanks

[Obita]

Doogan:


Try not to dwell on the what ifs too much just yet ( I know its hard and human nature to do it).  Send your CT cd to the House in LA for starters.  They do free consults.

Write down your zillions of questions for your doctor this afternoon.  #1, ask them how many of these surgeries they have done.  If they have not done HUNDREDS.....say thanks for your time and vamoose!!  Your outcome will depend on their experience.

Then, go see a radiologist for an opinion on GK - I don't know much about that but I would assume the radiologist would need to be a specialist in ANs also??

Good luck this afternoon.  Let us all know how it goes.  Kathy

ps:  I know there are a ton of east coasters on this board.  I know they will post soon.......lots in CT for sure.

[ppearl214]

Hi Doogan,

Me again... regarding your question of debulk, then radiation... jcinma does a post here about her experience with it... done here in Boston.... fyi and happy reading.


http://anausa.org/forum/index.php?topic=196.0

Phyl