facial schwannoma

[lyndaviolassi]

On July 7th, 2010, Dr. Telian and Thompson from the University of Michigan found, during surgery, that instead of having an AN, I had a Facial Schwannoma.  Once they realized that I had a FS, all they could do was shave off the top of the boney canal where all four nerves reside to give them all room to rest comfortably.  I have searched the internet for some support group to help me through this whole discovery, but have found none.  The ANA has been a great help to me over the past year when I thought I had an AN.  I'm hoping to find support here with my latest news.
My tumor is 9mm and has not grown in 3 years.  I have no noticeable facial paralysis.  My hearing has diminished some, but I'm hoping that it's because there is fluid that still needs to be absorbed.  The good news is that my balance is the best it's been in a long time.
If anyone out there has had a similar experience, I'd love to read your story.
Blessings,
Lynda

[ppearl214]

Hi Lynda and welcome. I'm glad you got final word on your schwannoma (facial vs acoustic).  We're glad to help.

I'll recommend a user/person here named "Sheryl". Now, Sheryl is in watch/wait (W/W) with a facial neuroma and I have met her and her husband.  A very lovely couple (lives Cape Cod during warm season... "snowbirds" to FL in the colder months).  Sheryl has been in watch/wait for a number of years and if you do a search option here, you will see she is a very active person here on the forums. Seek her out... she's a wealth of info, support and gives great hugglez.  You can tell her I said that!

Hang in there... and again, welcome.
Phyl

[iluuvpups]

Hi, Lynda.  Welcome to my world!  

I had translab surgery on May 27th to remove what I was told was a 2cm AN but turned out to be a facial neuroma.  They took out as much of the tumor as they said they could without paralyzing my face.  I have maybe 5mm left on my facial nerve.  I'm not aware of them taking any boney canal bits out.  They then packed the area with fat from my tummy, leaving me with a 'full' feeling in my ear.

I have some facial weakness now.  Just after surgery, my eyebrow on the left side and my lower lip didn't move.  They've since gotten a little better.  Also, my tear duct doesn't work.  I have a metallic taste on the left side of my mouth.  I'm now SSD due to the translab approach.  My balance was really messed up for like a year before the surgery, so I felt no different after the surgery.  I guess I'd compensated already for the destruction of my vestibular system.

I'm also here in Michigan.  My doctors are Dr. Kartush and Dr. Pieper of the Michigan Ear Institute.

I'm now at a crossroads of determining what to do next.  My doctors want to perform gamma knife radiation to kill off the rest of the tumor.  However, everything I've read on here suggests that would paralyze my face.  I can't find a single facial neuroma patient who has had radiation.  So I'm trying to get a second opinion.  I contacted Dr. Brackmann at the House Ear Clinic, who gave me a second opinion prior to my translab surgery.  After multiple attempts to reach him, it appears he's choosing not to respond to me.  So I'm not sure who to talk to from here.  I would appreciate any suggestions from anyone on who I might talk to for another opinion (or two).

So what are they saying is your next step, Lynda?

Take care.  --Carol Ann

[Jill Marie]

Hi Lynda,

I too was told I had an AN, however I found out the day before surgery that it was a Facial Neuroma.  I had my surgery in 92, don't know what was available back then, have no idea if I had any options.  Like you I couldn't find a support board and wound up here.  This board has been great, learned a lot and feel good knowing I can come here for support as so many have said before me, others just don't understand.  I'm deaf in my left ear, pretty much was before the surgery, had a hearing loss when I started school so the tumor was growing for a long time.  I was 35 when I had the surgery.  My left eye blinks but doesn't tear, use eye ointment constantly because I have feeling on the left side.  I can't smile but when my face is at rest you can't tell I have any facial weakness. I've never had any balance issues.  I realize none of this helps you put I just wanted to say Hi to another Facial Neuroma buddy.  Jill

[Cheryl R]

Lynda,  I had a facial neuroma with surgery in 2006.   Dr Bruce Gantz at University of Iowa does do surgery on facial neuromas.    He then will do a nerve graft at the same time with taking some nerve from by the ear if the nerve ends up being severed which was my case.    This was one of 3  tumors I have had due to having NF2.  I also have had an AN on each side.             We knew ahead this might be a FN due to some start of facial drooping prior to surgery but they can not say for sure till they get in there.                 I did have paralysis for several months but it improved so look ok at rest but not complete movement.   My eye also closes with just a little dryness off and on.                       Not fun to find out that is what one does have and drs do vary with their experience with these.
  I live in Iowa but we have a daughter in Lansing so have been to MI some and is a nice state.   
                   Good luck in how it goes for you!                     Cheryl R
     

[arkansasfarmgirl]

I too had a facial tumor.  They knew it was a possibility before surgery, but then after surgery there was still some disagreeement among the dr's as to whether it was truly a FS or an AN that had wrapped around the facial nerve.  Doesn't matter, as the result was the same, due to my age (34) and tumor size (4.5 cm at diagnosis..."much larger" at removal), they cut my facial nerve and grafted it with a nerve from my neck.

Surgery was in Nov 2008, with Dr Brackmann, btw, and I started getting movement back 6 months later.  I have been doing accupuncture since April 2009.  My MIL, after not having seen me in a few months, remarked last weekend that my face was "back to normal".  Welllll, not exactly, but I really can't complain.  :-)  My left eye blinks slower, my mouth doesn't lift up very well when I smile (although it smiles out pretty darn good--just gives me a crooked smile when I grin), and my left eyebrow is stuck.  Oh, and my left eye tears like crazy when I sweat.  LOL  Other than that, sure, pretty normal.  ;-)

I had only a very slight, not even noticeable facial weakness before surgery.  My left eye blinked just a tad slower than my other eye.  But it had been that way since I'd had Bell's Palsy in 1998.  What finally prompted me to go to the dr was when my balance went totally out on me when my daughter was 4 weeks old.  I tried to ride my horse and the wonky head hit me hard!!  :-P

[yardtick]

I too have a facial neuroma and a section of bone was removed in the bony canal to allow for growth.  I had surgery almost 4 years ago, the tumour was debulked and has remained stable, thankfully.  I am watch and wait and I am hoping and praying it remains that way for a great many years.  If there should be growth I will need a nerve graft.  At the moment I have slight facial weakening, the eye blinks a little slower and I have terrible balance.  When I am very tired or battling a headache or facial pain the facial weakening is more noticeable.  My biggest complaints; facial pain, headaches, fatigue and depression.  I'm on Lyrica for the nerve pain and it is helping, it doesn't alleviate all the pain but life is much better.

Lynda, this forum has been my saving grace and sanity for the last 3 years.  People here are understanding, informative, crazy funny and did I say informative!  Read as much as you can without over loading your brain and ask away if you have any questions or concerns. 

Anne Marie

[drissa]

HI everybody,

First I just want to tell you something,

I think it's important  know the differents stories of people who have been suffer of a facial schwannoma, I was very happy to find them in this forum.
Whenever it's important too , know that every patient, every case case is different : length of the schwannoma, age of the schwannoma, localisation, age of the patient, way of life ( sports, alcool, cigaret),  etc...

In my case, doctors saw the shwannoma in 2005. This year I didn't have facial palsy , no weakness, no problem to ear , balance normal. So they decide to wait and see the evolution of the schwannoma, maybe it will grow maybe not. Ans they knew that after surgery I will have be in a worst state.
Between 2006 and 2008 i developed facial palsy and that was a clue to plan the surgery. I get it on may 2008, facial nerve transposition ( they cut the part of the nerve with the schwannoma and they grafted a part of the auricular nerve instead).

I was totaly paralysed during 10 month, and after I begun the recovery, and i still recovering.... Before the surgery they told me that there are risk : eyes tears, problem of balance, problem of earing and that I won't recover all of my mobility probably 3 on House-Brackmann scale.

Today I have no problem of tears, nor balance, nor earing and i am 3 on house brackmann scale.
Thats for the facts. The other part is the feelings and the mental wich are for me the most important. I will not lie, I crossed difficult period before and after surgery, I had to be strong and nerver gave up !!!!


sorry for my bad english... I am frecnh..
I wish the best issue

[leapyrtwins]

I met Dr. Telian last August @ the ANA Symposium in Chicago.  He's a great doctor - very knowledge, very experienced, and very nice.

Lilan had a facial schwannoma.  Her surgery was @ House Ear Institute (HEI) in Los Angeles and she had a good outcome.  She hasn't posted in a while, but you can search for her posts - or send her a PM (personal message).

Good luck!

Jan

[lyndaviolassi]

Thanks for all of your replies.  I can't tell you how comforting it was to see that I'm not alone in this journey.
I was wondering a few  things.  Do any of you remember how long it took for your jaw to open normally after the surgery?  I'm still (5 weeks post-op) having a hard time opening my mouth all of the way.    Also, does anyone know what these whitish, fiber looking  things are sticking out (barely) from the seam of my incision?  I tried to pull one of them out with a pair of tweezers and it was obviously rooted to something. 
Anyway, thanks for letting me join your forum.  It really is a comfort to me to have support.
Lynda

[iluuvpups]

Hi Lynda.  I had a little trouble opening my jaw all the way after surgery.  I mean, I could do it, but it was painful.  It took maybe 1-2 months for that to go away.  I don't know what the whitish things are in your incision.  I never was able to see mine in the mirror.  I tried every which way and couldn't ever get a view of the stitched area and still haven't to this day. I do know that at my 6 week appointment, there were still some stitches I was feeling that they removed very late.  I don't know why they weren't removed at my 3 week appointment.  Perhaps you need to see your doctor and have him look at the stitches?  --Carol Ann

[yardtick]

Lynda,

It took me several months before I could open my mouth completely.  I ended up loosing 30 lbs as a result of not being able to eat properly, don't worry the 30 lbs found me over the last few years because of medication.  I still cannot open my mouth wide enough to bite into an apple because it hurts too much.  I have trouble eating buns, hot dogs and corn on the cob.  I had corn on the cob the other day and it was good it was worth the aching jaw afterwards.  I find that if I have to chew a lot my jaw aches.  I'm very selective on cuts of meat and the thickness.  I guess it is just something one has to adapt to.

Anne Marie

[KarenE]

Hi!
I went for what I thought was a 3.1cm AN, but when my Dr got in there, he said that it turned out to be a facial schwannoma!  Apparently, the tumor was wrapped around the nerve and a major atery.  He took the entire tumor out, plus the 7th nerve.    I am 3 and a half weeks post op and can't move the left side of my face at all.  No blinking or tears and no smile.  I have reconstructive surgery scheduled on Aug 30th to take a nerve from my leg and put it in my face.  Hopefully, this will help me smile again at my boys in time!!

[iluuvpups]

Hi KarenE.  Welcome to the forum!  Sorry to hear about your facial schwannoma, but glad you found this very supportive community.  I wish you good luck on the 30th.  I've heard that the nerve graft surgery does give some movement back in time.  Where are you being treated?  --Carol Ann

[yardtick]

Karen,

Let me be the second person to welcome you to this forum.  I wish you did not have to find us, and I wish I lived around the corner or down the street to be with you. 

You had a pretty good size tumour there!  I wish you good luck with the nerve graft.  One day I too will need the same nerve graft.  There are a growing number of facial neuromas on the forum.  People here are amazing and a wealth of information. 

Please tell us more about your self, age, and about your family. 

Anne Marie