Coming to terms with your Facial Paralysis

[Gennysmom]

Hi Patti!  Long time no talk!  How's your girl?  Gracie, right? 

What messed my face up is that my dentist said I was grinding my teeth after surgery, so I should wear a mouth guard...so I did, and that's when the synkenisis started, as did the hypertonus.  So I stopped with the mouth guard.  The hypertonus has let up a bit, but still knots up sometimes, like now for some reason.  I can't pucker properly, can't sip through a straw on that side, and can't whistle for my dog.  I also have to watch how big a drink I take, if it's too much it squirts out of that side.  Did the botox help at all for that??

Synkenisis in our issue is where the 7th, or facial nerve, is disturbed...for us from the microsurgery...and as it regenerates, the nerve pathways can cross.  The 7th nerve is responsible for the facial muscles around your eye, mouth and cheek.  So what can happen is that when you pucker, the muscles around your eye get the same message and they contract as well...closing your eye.  Makes eating real fun, especially when you get a drippy eye like I have too.  The way to really fix it is with botox, so the muscles around your eye stop moving and the information just gets to the muscles around your mouth.  I just haven't taken that leap....yet...if ever. 

[pattibobatti]

Hi Kathleen,

Gracie is just fine, a bit of a pill though!  She heard a bird outside this summer singing a song and now she does that all the time....

My eye doesn't have any problems, I just had my upper lip kind of raise up.  It is nice to not have that anymore.  Do you just not like the idea of botox? My insurance paid for it, too.

Patti

[Gennysmom]

Hi Patti!

My doc and I were waiting a bit to see if would resolve itself...I didn't want to mess with it too much early on if it was going to fix itself.  I've been thinking about it again though now that I'm 14 months out....so the botox didn't help at all with use of your lips?  I'm at that point where I think I'm done...this is as good as it gets.  It's not bad comparatively mind you, but it still can bug me especially when I never used to stain my shirts from eating, and now things just fall out sometimes.  I think I've used more napkins in the last 14 months than I have in my 41 prior years. 

My little parrotlet Fiona whistles to the outside birds, but the other two don't seem to notice them unless they're a dark shadow over the skylight.  I'm not sure they know they're birds, I think they think they're feathered humans.  We're just getting through the second molt of the year, messy time around the house, but now everyone looks so pretty! 

[marg]

Hi Gennysmom,
   I appreciate the info. about the synkenisis.... my facial paralysis is getting better around the mouth and cheek... but my top eyelid hasn't changed at all in the last 3 months.  It still doesn't blink.  I can make it close if I focus on it... but it doesn't do it on it's own.  Is the eye the last to see (no pun intended) improvement?  Thanks, marg

[Gennysmom]

I can only speak from my own experience...I had surgery in July, and by December my face had gotten better, then it went in twitch mode...what I noticed was that I'd have an area of my face that would twitch for a couple weeks then I'd notice a bit of improvement in that area.  That's still going on, although it has plateau'd quite a bit.  It seemed to switch back and fourth with a little improvement to my eye, then my mouth, then my eye and so on.  By 3 months my eye closed, but I still don't feel like if I brushed against something it would stay closed...I'm very protective of it. 

I also have to say that I'm sure that there's more that I could be doing to get it back to the way it was....but part of me likes the dysfunction in that it is like a scar....a visible feature of what I've gone through.  I've always been one to think wrinkes and gray hair is earned and should be worn like a badge of honor.  Of course I'm blonde naturally, you can't see the gray hair much yet, and my skin is young for my age...so that might change!    Also, I feel like trying to get back to the normal me before this thing is like swimming upstream...a battle I don't want to take...I'd rather turn around and run with the flow and accept the new me. 

[aloha808]

Hey Gennysmom,

I know how you feel.  Some days I just can't stand to look in the mirror and wonder what I can do to fix my face, but then there are other days (most days) when I'm very grateful to be alive and that I survived my surgery.  I have 3 children who keep me going and when I'm with them, I can be myself and not feel insecure that my right side of my face doesn't move when I talk or laugh.  I can laugh as hard as I want and it actually really helps me feel better.  I swear, its true that laughter is the best medicine.  I know that feeling of just going with the flow and accepting the cards you've been dealt.  Its comforting to know that there are a lot of people going through the same thing I am and are experiencing the same feeling and emotions that I am.  Its hard, but I have to believe that what doesn't kill us, makes us stronger.  Without thoughts like that, I'd probably be living under a rock.

One day at a time.

[Gennysmom]

Mahalo Aloha808....You've got the right spirit for someone so young with this.  There's nowhere to escape when it's your head that's constantly giving the signal "something's wrong with your head"...so I think all you can do is roll with it.  And you're right, laughter is the best medicine....I feel my best when I can let everything go and laugh...especially when I'm with other ANers that "get" why I'm laughing, especially at myself when I've stumbled or something.  I have to say though, I don't have any major functional issues which would probably drive me to fix them, so I might feel different then. 

Yes, all those things keep me from 'neath the rock as well.   Hope everybody has a great day!