Coming to terms with your Facial Paralysis

[er]

My husband took me out for Mexican food for Mothers Day. And the waitress couldn't stop staring at me. It really bothered me.
I'm sure grateful my husband and my family don't see what others see anymore.
eve

[MCLARKE46319]

When they stare at my daughter Meagan she tells them "I had a brain tumor".  They don't know what to say and usually turn away with an "I'm sorry" or they just turn away.  She tries to not let people staring get her down.  She is back to work and going strong and is happy to be living her life again. 

[1wareagle]

MCLARKE,

I know what you mean. They do me the same way after asking what's wrong with my face. It really doesn't bother me anymore like it did. I'm alots more open to ask someone else what's wrong with them than I used to be. I thought if I asked it drawed attention to their problem. So I wouldn't ask. I met a women the other day whose face was just like mine. I walked up to her and asked her what happen to her. She told me when she was 5 yrs old she had spinal minneagious (?spelling) and was left with no movements in her face. She was so nice and acted like she was glad to tell me. I had rather them ask than just stare.

Ellis

[Meagan]

It is nice and supportive to see my mom on here.  I also realize she is not doing work at work   I work in sales so it is hard to sell the hotel i work for because i am very self conscience (sp?). I am very open about what i had because i think it is cool to have gone through all these hurdels and live to talk about it.  I just wonder when is my face going back to normal??  I had my nerves stretched and we are going on month 6 and only small movement.  I can't wait to get off the straws and drink from a normal cup.

[nancyann]

Who's your mom Meagan?  If you're getting movement 6 months out - you'll probably keep seeing improvement - I LOVE TO HEAR THAT !!!!  GREAT NEWS !!!  Nancy

[Jeanlea]

Hi Meagan,

I'm nearly 21 months out and I'm still seeing some good progress.  It takes a LONG time.  My nerves must have been super-stretched.  After awhile you will begin to lose some of the self-consciousness about your face.  At least I did.  Not totally, but enough to forget about it from time to time.  I am a teacher so I'm in front of people every day.  At least they are the same people which helps. 
This is what I do so I don't need to use a straw to drink.  I keep the cup nearer to the good side of my mouth and use my finger to hold up the bad side.  I got tired of taking straws everywhere.  If I drink very slowly I'm starting to be able to drink without even using my finger on the bad side.

Jean

[Meagan]

My mom is MClarke...i have tried to not use straws but the water goes all over me...maybe in time.  My nerves were stretched to paper thin so i am sure it takes a while.

[daylilly]

I just discovered today that it is time for me to come to terms with my facial paralysis. I am 22 mos. out and my EMG
showed no improvement from the one I had at 6 mos. Though I have a strong signal below my lip, there is nothing in my
cheek which is why I have no lip turn up for a smile. I always hoped some morning I would wake up and have a little
corner of my mouth turn up ever so slightly. It seems so strange to never be able to smile at my kids but they seem fine
with the new me. I had a really good friend recently die of breast cancer and know how lucky I am to be here for my kids
and to only have had a benign tumor. My friend that died was the one who actually diagnosed my tumor and talked me
into having my symptoms checked out. My eight year old who comes to my rescue when he sees that I'm sad suggested
that I draw a smile and just tape it on. I guess I'm off to find a plastic surgeon. My MRI is on Wednesday. A small amount
of tumor was left on the facial nerve to preserve it so I'm hoping that there is no regrowth. Sometimes it's a day at a time. Sue

[Jeanlea]

Sue,

It's always hard to hear that our faces are not coming back to the way they were before.  In time it will get better.  The people that we love seem to be able to adapt to it better than we are.  It sounds like many people here are doing well with the 7-12 procedure.  Maybe that's something that will work for you. 
Isn't it amazing that even though you can't smile your son can still tell when you are sad?  Children can make you feel so much better.  It's good to remember that you are still there for them.
Good luck with your MRI.  Enjoy each day as you take it one day at a time. 

Jean

[nancyann]

Woke up this morning, looked in the mirror, same facial paralysis.  Today is my 1 year surgery anniversary & my life was changed forever.  I'm feeling really upset as I sit here at work; I realize I should be grateful it 'wasn't worse' as people say, but I can't help feeling so sad....  I have the same EMG results as you Sue, nothing by the cheek area, just the chin.  I have an appt. with a reconstructive surgeon July 13th - we'll see how it goes....

[Jeanlea]

Nancy, I'm sending big hugs your way.  Hope you feel less upset soon. 

Jean

[1wareagle]

Nancy,
      I kind of know how you feel. I'm coming up on my 6mts anniversary and still no movements. Everyday I hear of someone who is in worse shape than me. I know I am so lucky that it wasn't any worse than it was. Good luck with your appointment on July 13th.

Ellis

[TP]

I just past my anniversary of my AN and there is some small movement but no smile. When I try to smile it feels like I am smiling but when I look in the mirror it is just not there. People tell me I look better but I really can't see it. However, last Monday, I saw an eye specialist and she gave me prisms to place over my glasses to correct my double vision instead of that stupid black tape over my glasses. That made me happy. My surgery is scheduled for August to fix my eye. Once I have a normal eye I guess I need to look into some type of facial surgery that you guys are mentioning.

I want to say you all are beautiful even though we have never met. I am sure if I ever have the pleasure meeting you all, I will see your smile and your kind spirit. It lives within us! Stay positive and be strong.

[Jeanlea]

TP,

Was your facial nerve cut?  Mine was intact after surgery even though I had no movement.  I started getting back a very small amount of movement after 3 months.  It was so small most people would not have noticed.  At about a year I was like you.  I could feel myself smiling, but it didn't show when I looked in a mirror.  Eventually it did start to show.  I'm at 21 months now and I have a little smile. 
I never realized how much a problem  a non-blinking eye could be.  Happy to hear that you are making some progress in improving your vision.  I'm putting in ointment every two hours.  I say it's a pain, but I can't feel a thing.  lol

Jean

[Jill Marie]

Nancyann,  Yes those anniversary days are hard, especially the first one!   As they say it gets easier down the road.  When I read your post I realized that I missed my anniversary last Friday, 15 years will do that.  I know for sure that I didn't miss the first 5 anniversaries, after that I often thought about the day but it was often a couple days later, in other words, you begin not to focus so much on it as other things in life get your attention.  I know you know you're lucky as you for one are able to work, not everyone can.  However, today is your day and you have earned the right to be sad, mad & frustrated.   

Sometimes when I read a post about someone's facial paralysis improving I am glad for them but reading the post makes me sad because I don't feel there will ever be a change considering how long it's been since my surgery and of course because the doctors have nothing new to tell me.  Please keep in mind that I had a facial nerve tumor not an AN so my story is a bit different.  Tonight I'm the one that gets to share a bit of good news, nothing big and I'm guessing nothing big will come from it but I just wanted to share it with all of you and with you Nancyann in particular because it's your anniversary and you're also the first one that posted to me when I first posted on this site.  I'm going to tell my husband AFTERr I tell you guys as you will better understand what I have to say.  Yesterday, I felt a small twinge on the left side of my face, I have felt a small twinge there before but only once or twice a year.  Yesterday I felt one, then 2, then 3 then another one and ran to the bathroom at work in hopes of seeing the movement, I DID!  I felt a couple more later that afternoon.  I'm not counting on anything happening, like my eye watering again or being able to smile but it's just cool to feel something I haven't felt in years.  I went to bed thinking that was probably it, then this afternoon it started again, this time it was more than a twinge, it was like the upper part of my cheek just below my eye from the bridge of my nose to my ear moved like a muscle contracting.  It's done it 3 times since I started this post.  Have no idea what it means but it's cool!  What I'm trying to say is, don't loose HOPE, if I can feel something like this after 15 years who knows what all of you may experience, tomorrow or in the days to come.  Don't let the fact that it took me 15 years to feel this discourage you, my tumor started growing before I started school so it was slow growing (removed when I was 35), guess my healing is the same.  From what I've read AN's for the most part grow faster, hopefully the healing is faster as well.  Good luck, Jill