25 year old just had AN surgery and tumor was on or in facial nerve

[nicole saltsman]

Hey there. I'm a 25 year old mother of three. Just had surgery on May 16th, 2013 to remove an acoustic neuroma. I'm a little confused as to what happened during the surgery (I was so out of it when the doctors spoke to me in the hospital), but I guess my tumor was discovered to be on or in the facial nerve. My tumor was an incidental finding to begin with and I basically had no symptoms. Now I am deaf on my left side (I was prepared for this) and have one-sided facial paralysis    (totally didn't expect). I chose to undergo surgery because my tumor was beginning to indent my brainstem. Now I am wondering too late if I did the right thing. I will see my neurosurgeons again in several days, but from what I understand, my tumor could not be completely removed. Has anyone else had a facial neuroma? My surgeon said that he had never seen one like mine before  Not very comforting... I'm assuming I will have to do the whole radiation thing, but couldn't that screw up any hope of regaining facial movement? Has anyone had similar experiences? It is hard to find much info on the net in regards to facial neuromas...

[ewchisek]

Hi. I'm 35 and just had the similar thing happen to me;( I knew I'd lose my hearing, but did not expect to wake up with facial paralysis. My surgery was in February and then I had a nerve graft in march. Did your dr cut the nerve or leave some of the tumor to save facial nerve? My tumor was growing on facial nerve, making it a facial neuroma, completely unexpected. From what I was told this only happens 2% of the time, lucky me! Anyways, hope you are recovering well and I'm sorry you have to go through this, it isn't easy not looking the same, but my four boys have kept me moving and being a mom. Without them I'd be in rough shape. You're kiddos will help you overcome this. Take care Elizabeth

[alabamajane]

Hi Nicole,
I too had a very similar situation about 20 months ago,, mine was also an incidental finding on an MRI for seizures. Mine was also pressing on the brainstem and had grown in three yrs of W&W to 2.7 CM . I had translab surgery so am also SSD, single side deaf, and after they got in there found it had attached to facial nerve and so nerve was severed resulting in me also awakening to unexpected facial paralysis ,, not a happy situation at all as you say..I stayed in ICU for four days and had the 12/7 facial nerve graft done.. If your nerve was severed you should also be eligible for that graft,, maybe it will be discussed when you see your neurosurgeon ,, it has enabled me to get some movement and smile back.. It is a VERY slow process though,, 12-18 months for nerve regeneration,,, much patience needed,, but progress has happened,,, I did not have any radiation as entire tumor was removed...I have had an annual MRI last Sept. and so far all clear..
I am sure you will get many questions answered when you see the Dr in a few days,, we are so groggy in the hospital we don't remember much that is said to us,, I know I didn't ! Good luck and know you will be fine with some time,, as Elizabeth said,, your children will see to that! They will love you and need you "just as you are",, I remember well how you are feeling,, I was very angry for quite awhile and it took a lot just to get through those first months,, but know it will get better,, not the same but you will heal,, right now you must give yourself time,, lots of it,,and rest as much as you can and walk and get up and out. As my Dr told me and my husband, he wanted me to go out, engage myself with people and not sit at home,, it is hard but it does get better,, best of luck to you in your recovery,, ask away on here for help,, we are here to give our "non-medical" personal experience advice,,,Jane

[Jill Marie]

Hi Nicole,

I too had a Facial Neuroma, that was 21 years ago!  I went to the doctor because of a severe earache I had a few months after I had one while out camping.  Doctor told me to have it checked out sometime but didn't think there was a big issue.  A couple of years later I noticed I couldn't hear anything in my left ear while listening to my Walkman (radio).  We had just sold our home and had a little extra cash so I decided it was a good time to have it checked further.  Doctor sent me to ENT, ENT sent me to Seattle to have AN removed.  Seattle doctor told me the day before surgery that I had a Facial Neuroma and would have total Facial Paralysis for 6 months then partial forever.  He said I wouldn't be able to drink from a straw, left eye wouldn't blink, eye wouldn't tear at first but would later.  The facial nerve was cut and a nerve from my neck was put in where the tumor was.  The day after my surgery my eye blinked, I couldn't drink from a cup so my husband told me to try a straw, told him the doctor said I couldn't he asked me to try anyway, it worked, my eye didn't tear and still doesn't 21 years later.  Everyone is different and the doctors don't always know what is going to happen so try and be patient, you never know how it will turn out. 

I was 35 when I had my surgery, married with 2 young boys!  As you have already read, the children still love you and care about you nothing in that way has changed.  Thankfully my husband & boys where there to get me through the rough months.  I've been married 36 years, worked at the same place for 18 years now, got the job 3 years after my surgery.  Still have issues with my eye but thankfully the new sceral contact lens I have has taken care of most of that this past year, can't smile but people can tell from what I say, how I say it and the look in my eyes that I'm smiling inside! 

You are so right about there not being much on Facial Neuromas on the net, thankfully this board is here to help.  A lot of the people that have or have had AN's have had similar issues to those with Facial Neuromas so we can all help each other out.  Ask all the questions you want, vent when you need to, we're always here to help.  Jill Marie

[Bopent2460]

My AN was about 6 years ago. The facial paralysis was a known possibility for me. I'm 36 and at 30 it was hard to deal with. I am a person who believes in being positive and grateful... Which I was and am. Still though I battled with depression. Wanting to feel attractive etc... I never knew that a broken smile could affect me so. It was only less than a year ago that I found that I don't constantly find myself wondering how others perceive me. I want you ladies to research a sweet wonderful woman named Jackie Diels. She taught me that what I have is NOT paralysis, but synkinesis. (Muscles locked in a state of CONTRACTION ... Not flaccidity ... So there is hope... I've been working with her (she is an occupational therapist) the process of facial retraining is slow and mentally exhausting ... But I have seen some subtle improvements and have hope for more.

[Gloria Nailor]

I am amazed that your surgeons did not tell some of you that facial paralysis could be a side effect of surgery. I knew it could happen and I was devastated, it would have been even more horrible if I had not been prepared for it.  One day before my year anniversary of surgery I regained partial movement in my mouth and regained a crooked smile It took over two years for me to accept the paralysis and overcome how it effected my life. I felt like less of a person, which is stupid, and worried about what others thought of me, which is also stupid.  I thought that when they saw my face they would assume I was mentally disabled and treat me differently. They left behind a small portion of my tumor, it was wrapped around the facial nerve ( I had told my surgeon to leave some of the tumor if taking it out meant my face would be permanently paralyzed ) and unfortunately it regrew two years later and I just had GK radiation this past July.  Friends tell me they still see improvement in my face, even now after two years, it takes a LONG time for these nerves to regenerate, and it is so hard to be patient? I pray that your paralysis is temporary. Be well.

[arkansasfarmgirl]

I haven't been on here in a while, but decided to visit since tomorrow is the 5 year anniversary of surgery to remove an unusually ginormous tumor that turned out to involve my facial nerve.  I was 34 and had a 3 year old and a 3 month old at the time.  They knew facial involvement was a possibility, and so were prepared to do a nerve graft during removal surgery.  It took about 6 months for movement recovery to kick in, but it did.  It's not perfect, but it's no longer terribly noticeable either, and even 5 years later I'm still seeing small improvements.  My daughter is now in kindergarten and thinks I'm the most beautiful, awesomest mama ever (I'm storing all this up in preparation for her teenaged years LOL).  Crooked smiles are a thing of beauty to her.  She even carved her jack o'lantern to look like my smile this year.  My son is a stinker, and doesn't say sweet things like that, but all he cares about is that he has a mama--it means nothing that I used to look one way and now look another.  My husband still chases me around the house playing grab-ass, so I don't guess it bothers him either. ;-)   I won't tell you it was an easy journey to get to where I am, but it's part of my life story and I can honestly say has improved my character for the better.

[hruss]

Hi there Nicole,

Please do not feel down for things that are not under your control. Neither of us wanted a tumor but we had to deal with what we had and the fact that we went through this hellish process means we are all much stronger. I know how down a problem with your face can make you feel! I was 24 when I had my first two surgeries and 25 at the time for the last surgery that took the tumor out at the expense of movements in my AN part of the face. Like you I had a BIG tumor (approx as big as an egg), the brain stem was s-shaped and the tumor, despite on the cochlear nerve, was also wrapped well around the facial nerve.

Give it a plenty of time and try to live as much as possible free of the thought of the facial weakness. Your husband and children will be your strength! I did not have a boyfriend at that time and was so unhappy because I knew no one would ever like me. I could not drink but from a straw, I did not blink at all and they had to sew my eye lid to save my vision. It was an incredibly difficult time. And this all lasted for more than 6 mo. Then I started regaining slight movements and now I can smile a little on the injured part or squint to blink from time to time (not as regularly as on the well functioning side though). Now that I am 5 years post op, I do not notice any change any more, but the first two years after the surgery are crucial and I did my exercises religiously in front of the mirror three times a day. The kinesiologist at the hospital taught me the necessary exercises to retrain my muscles and nerves (I still have numb spots on my face, can't wrinkle the AN side of my forehead) but I am pretty happy with what I have gotten starting from ground zero. Do you do some facial exercises?

All the best and don't give up!
Hrissy