Coming to terms with your Facial Paralysis

[nancyann]

Thanks all for the kind words, feeling a little better today, I wasn't expecting to feel so sad yesterday, whew!, glad it's over.  I'm praying you continue to show movement Jill, Jean (& all of us to start having movement).

[chrissmom]

Hi Nancy,
You need a hug, my friend.

I hope you're feeling better today.  Keep looking forward, don't look back. Stay positive and Hang in there.  Facial paralysis seems to improve at a snails pace.  You had a rough spot with the removal of the weight and dry eye.  I realize the whole process seems to take so long.  Chris went to the facial nerve center today and saw little movement since 3 weeks ago.  He felt bad too but I reminded him that his doctor, who hasn't seen him in six months actually saw movement on Friday.  It seems that one day you see movement and the next day you don't.  I know this can be frustrating. 

At the facial nerve center, we get hope. One thing that seems to help is actually seeing the biofeedback that we get when they put the electrodes on his face and actually watch the smallest undectable movements on the computer screen.  It gives us all great hope.  You can see graph-like results on the computer monitor long before they are visually seen on the face.  You can tell that the nerve is slowly regenerating.  You can also see how the exercises are helping.

[neal r. lyons]

Wow!  Alot of heartful thoughts.  Although I'm just one week post surgery and experiencing the whole facial nerve recovery or lack thereof issue you folks have certainly given me lots of first hand info based upon your experiences.  I think I contain a fair amount of vanity and this is and will continue to  be a big deal for me most likely the rest of my life.  This will be a significant lifetime adjustment.   Hoping to be able to keep my head up when I feel like it, and to learn to acept stares as insignificant in the greater scheme of things.  Thanks for the postes.  I'm all in on this one!
    God Bless!   Neal

[neal r. lyons]

Wow!  Alot of heartful thoughts.  Although I'm just one week post surgery and experiencing the whole facial nerve recovery or lack thereof issue you folks have certainly given me lots of first hand info based upon your experiences.  I think I contain a fair amount of vanity and this is and will continue to  be a big deal for me most likely the rest of my life.  This will be a significant lifetime adjustment.   Hoping to be able to keep my head up when I feel like it, and to learn to acept stares as insignificant in the greater scheme of things.  Thanks for the postes.  I'm all in on this one!
    God Bless!   Neal

[marg]

Hi Nancy,
      I hope things are much better for you today.  At only 6 weeks out from my surgery I feel thankful that I am seeing some  small movement in my cheek and that I can drink from a cup without spilling too much (except if I forget and try to pucker my lips and the coffee squirts out all over my shirt .... which has happened a couple of times.... thank goodness only at home  )

     My left eye doesn't blink and it gets stared at more than my mouth (which doesn't look too bad if  I don't try to smile).  I had one friend ask me if I could see out of it  and another friend - who is a nurse - say 'I keep looking at your right eye because I keep thinking you can't see out of the left one'.   I don't know if I appreciate their comments or if it makes me more uncomfortable.  Now I wonder if everyone thinks I can't see out of my left eye when they look at me. 
Anyway,  I'm glad I have AN family and we can be there for each other.  Have a great July 4th.

Margaret

[TP]

I attended my 30th high school class reunion last night. The good news is most folks could not tell that I have anything wrong with my face. Some of them said my mouth does not move as much on the one side as it does on the other. No one said anything about my eye which is currently being corrected with a prism and has a gold weight in the lid. So, for someone who has facial paralysis and some pain associated with it, I was very happy that I looked normal to most of my old time friends.

This is a long road, one that the Dr didn't prepare me for but thanks to this forum I feel confident that I will continue to get better and my prayer is that I will totally be healed in the future! Now the not so good news is the music was way too loud and I had to wear an ear plug to stay in the room. I also found that I don't like being around a big group of people like I use too and I don't engage in a lot of conversation anymore. I found I had to turn my head constantly so I could hear what anyone was saying. Fortunately my friends were very kind and tried very hard to talk to my good ear but I probably missed half of all the juicy gossip! Which in the long run, probably is a good thing

[Gennysmom]

This is an older thread, but I've been out of the forum for a little bit...but I wanted to say one thing...I freak people out constantly because I stare at their mouth and have for years, but it's because I'm reading lips to verify that what I'm hearing is correct.   So if I ever meet you I'm not trying to be rude!!!!  Also, it's interesting, the more I mention that I am deaf in one ear, the more I hear "I'm the same way" from others...So I plead...please make sure you're giving someone the benefit of the doubt and not discriminating against someone else who is disabled as well.   At least when I talk you can see my face is crooked too so you know!   

[aloha808]

I know how frustrating the paralysis can be.  I also have paralysis on my right side along with total loss of hearing in my right ear.  Last year, I had a weight implanted in my eyelid as well as the outer corner of my eye sewn a little shut to help my eye to close.  Of course it was only partially successful, my eye still does not shut all the way.  Oh well, what can I do.  It sure is a hard road to have to deal with all of this.  I think shock is a major understatement when I found out I had a brain tumor the size of a golfball in my head.  I went into surgery 3 weeks after having my 3rd child and had just turned 30.  I couldn't for the life of me understand why this happened to me.  I started to think of what I could've done to deserve this, but I had to accept that this was my deck of cards that I had been dealt and had to run with it.  Its been almost 4 years since my surgery and I still struggle daily.  I went back to work 2 months after my surgery, but luckily I work for family, so it wasn't too bad.  The hardest part was feeling helpless when trying to take care of my newborn son.  But its funny how life is.  I heard this saying once that God gives the hardest challenges to the strongest people, but most times I don't feel strong at all.  Most times I feel helpless & insecure.  But I do have good days too, days when I'm su busy that I don't have time to think too much about everything wrong with me.  I'm so thankful that I've found ANA, because now I can hav people to talk & relate to that are suffering from the same sruggles and how they cope with it all.  Mahalo,  Kim

[nancyann]

Hi Kim:  Boy, some of your story sounds like me - back to work in 2 months, right sided facial paralysis, deaf right ear....   Well, I've decided NOT to go the nerve graft route (I'm more than 14 months post op, they say the sooner the better, though I've read some have had it 15 months out with good results), the thought of further nerve surgery scares me.  I am going to be seeing a facial reconstruction/plastic surgeon named Dr. Patrick Byrne @ Johns Hopkins in October for an initial consultation & subsequent facial surgery so I at least look 'normal' at rest - will still have the paralysis.
I've always been extremely independent also, this AN hasn't changed that.  You are strong Kim, just some days seem harder than others, I know that.  But you know, we take it one day at a time.  Always good thoughts,  Nancy

[linny]

I pray for everyone on here, this is a tough journey but we are all making it together.   Anyway I was wondering my facial parqalyzes is not drooping it looks more like Im snarling, does anyone have that??   

[nancyann]

Hi Linny, nice to meet you.    No, I have the droop, not a snarl; but I'm wondering if it's due to your muscles contracting ?  I'd check with your doc about this.  there are massages you can do to relax the muscles.  Is it painful?
And, be patient with the facial nerve regenerating - it's taken some on this board upwards of 2 years before they noticed improvements, but they do come, albeit slowly.    Take care, Nancy

[pattibobatti]

Hi Linny,

I understand the snarl thing...  I had AN surgery Jan 06.  I have lots of recovery but at about a year out I had the right upper lip start to raise up.  I thought is was from a nerve that did not grow back right or something... Very recently, I went to a doctor that explained it was from synkeniisis.  He injected botox in my right cheek and a week later my lip was completly straight across.  Besides looking better, it made drinking alot easier too!!

Maybe you have the same thing as me.....I sure hope the botox can help you too.

Patti

[Gennysmom]

Linny...snarl...know that well....I've been asked several times "I thought it was your right side that had the tumor" because the pull makes my left side look like the droopy one.  It is the contortion of the muscles as the nerves regenerate, and I have some synkenisis as well.  I massage my cheek a lot and constantly think "relax, muscles, relax", especially when I'm going to sleep or in bright sunlight.  If it's really bothering you, talk to your doctor, I'm just going the DIY way because it doesn't bug me that much.  I'm guessing if you put your thumb on the inside of your cheek and forefinger on the outside and massage around, you'll find some sore knots....work those out a bit and put a little heat on the area...that helps!  

[pattibobatti]

Hey Kathleen,

I tried the massage thing and it actually made it worse!!  But I never had any knots in my cheek. 

I went to the doctor to see if there might be a surgery for my lips because it was getting harder to drink and eat.  He surprised me when he said it was synkenisis. I still can't pucker on the right side, can you?

Patti

[marg]

Hi all,
    What is synkenisis?  I haven't heard of that before.
Thanks,
marg