Facial Paralysis - venting

[Jeanlea]

It's been nearly 3 months since my surgery.  My balance has come back remarkably well and my strength is about back to normal.  I'm also back at work teaching full time.  For that I am grateful.  I know I am supposed to be patient and wait for my facial paralysis to subside in due time, but I'm not doing very well with that.  I just want to be back to "normal." Or at least as close to normal as I can get now.  I pray every day that I will not have facial paralysis the rest of my life.  I know I should be happy with how things have turned out, but sometimes it's hard.

Thanks for letting me vent.  This is the best place for me to do that.

Jean

[Boppie]

Hi. Lois White here (AKA "Boppie" that's my grandsons' name for me).  I feel so for your because of the paralysis.  I ponder this possiblity for my own recovery and I know I wouldn't be patient with it.  My doctor has warned me that recovery of facial could take a year, if it happens.  I hated hearing this.  We want our faces and smiles back asap.  I just don't like to consider paralysis to be part of the bargain.  So, go ahead, vent, vent, vent...

Thanks for responding to my questions about balance.  My TL surgery is December 15.     

[Battyp]

HI Jean,
  Is your problem facial paralysis or numbness?  There is a differnce!  I have numbness and was told a minimum of 4 mos for normalacy to return.  I spoke with someone last night who had surgery 2 years ago and she said her's took more like 6 mos.  She also said she's still recovering from some of her problems 2 years later.  It's going to be a long 2 years for me then!

I was told there are also exercises you can do (facial ones) and neuromuscular stimulation that helps tremendously. 

I hate to say hang in there as I'm tired of hanging in there too!!!

M

[Jeanlea]

I have facial paralysis and numbness because I can't feel with that half of my face or move it.  The numbness doesn't bother me as much as not being able to move my face.  I can talk, but I look strange talking out of the side of my mouth.   I have been doing some of the exercises for my face that my physical therapist gave me.  I do them, but they don't seem to do anything.  Still can't smile. 

Jean

[wind6]

Jean,
 I am glad you feel safe enough to come here to vent. When I first came here I was very afraid to admit any negative feelings for fear that I would be seen as weak or ungrateful. Now, I am very comfortable talking about "all" of my feelings here.
I am almost four months out of surgery and I still have facial paralysis but it really is improving for me. I hope that you will begin to get signs of improvement soon. Seems like the times I am about ready to give up, I get a slight improvement. That keeps me going.
With all the things I have to deal with IE; balance loss, hearing loss, eye problems...you get the picture. With all those things, the face is the hardest to deal with. Lets face it, that is one deficit that we can not cover up and its really hard to go out in the world when we feel everyone sees that deficit. I tell myself that others do not matter and that i am strong enough to deal with peoples stares, but sometimes its just plain hard. So I say, go ahead and vent all you want and I hope that you always feel comforted here.     Sherry

[Jeanlea]

Sherry,

I think its nice that we have this safe place to vent.  I'm not ungrateful for what I have, but sometimes I remember what I had and it makes me sad.

I did have something kind of funny happen to me at school yesterday.  I teach 3rd graders.  One of the fourth graders, who has downs syndrome, asked me why I don't move my whole face.  I told him I can't.  He kept insisting that I should.  I laughed to myself to hear a child with unique facial looks telling me that I should move my whole face.  lol 

When I'm in better moods, I joke around and say that my face is suffering from botox gone bad.  lol  Just takes longer to wear off. 

Sherry, how does your face feel when it's coming back.  My face has a tingly feeling and sometimes there are tiny shocks.  I'm not sure if those are signs that it's coming back or not.

Jean

[wind6]

Jean, It is a tingly kind of feeling and sometimes I have areas that feel bruised. I have been doing facial massages to help the muscles relax. The movements seem easier when relaxed. Do you use the mirror? I had a very hard time looking at myself but I finally started working with a mirror. When I see "any" movement I try to focus on the feeling that caused it. It really does seem to help. Oh......I also get nerve twitches just before new movement starts.
Hope this helps. It sounds like the feelings are coming back for you.   Sherry

[antoinette]

Hi, Some of the best exercises are the simplest. Just the alphabet, pronounced slowly, exagerating the right pronounciation. And when you have a difficulty, (the sound of your own voice tells you) then you insist on that letter by finding all sort of words using that letter and that sound. The P and M are usualy the hardest, so make a song with mama papa peach, pork, permeable, map pam and so on, and sig it as it can relax you better.
I will give you more u ideas another time.
antoinette
(could anyone tell me if there is a spell check in this list system, I am the queen of typos and hate to read what I wrote) ?

[Zanybrainy]

Hi Jean,   I know that facial paralysis is the most frustrating thing.  It seems to be the biggest barrier to making you feel like a normal person.  I had a 4.0 cm acoustic neuroma removed January 24, 2005.  I lost my hearing on my right side and had to go to therapy to compensate for my balance.  The hardest part was  there was nothing I could do about the facial paralysis.  Mine was a 6 on a scale of 1-6 (6 being the worst).  It did not budge until the first of July.  Then my husband was the first to notice, even though I was always looking in the mirror to see if I saw any movement. It has continued to get better.  My daughter got married in October and I actually look pretty normal in the pictures.  After it started moving, a little boy at church brought me flowers and said he had been praying every night I would get my smile back.  Aren't kids awesome! Aside from lots of prayers, I have used a massager and heat on it atleast once a day. I also take vitamin C and a B complex.  I still have a gold weight in my eye but I rarely use drops. Hopefully that will come out soon. Although it may never be 100%.  I am thankful to God to be alive and ready to start living a normal life.  Believe me I really didn't think it would ever move again and then it did. Don't give up, Thankful everyday to be alive, Cath

[Jeanlea]

Hi Antoinette,

Thanks for your suggestion.  I remember reading about saying the ABCs before surgery.  I was still in the hospital when I started saying them.  (When no one was around.  I already looked kind of crazy, so didn' t want to sound crazy, too.)  I have noticed that the P and F sounds are difficult for me.  Lucky for me, I am a teacher so I get in a lot of practice speaking.  I am glad that I switched to teaching third graders instead of kindergarteners though.  Hard to teach them all the sound if I can't say some of them.  My third graders are watching me to see when I'll have my first whole smile.  I think that will have to be  a day of celebration when it happens.  Now they are kept busy reminding me to put the drops in my eye every hour.  

I am thankful that I have such nice students.  They know I'm a bit different now, but we do our normal classroom routines.  That really helps me.  If I do have an occasional problem they are very understanding.  Yesterday one of them read our chapter book (The Lion, the Witch, and the Wardrobe) to the class because I couldn't see because my eyes were dilated from my eye doctor visit.  

My eye is finally starting to improve, my face is tingling more...I'm starting to feel much better.

Thanks for your support.

Jean

[Jeanlea]

Zainybrainy,

Thanks for your post. I never heard of a face rating before, but I think mine is a 6 also since I have absolutly no movement.  It's encouraging to hear that yours did eventually return.  I'm so glad that you wrote that.  I tell everyone it will take 6 months to a year for movement to return.  I just have to remind myself that it may take that long.

Jean

[Jeff]

Here is a link to a description of the House Brackmann scale for Facial Nerve Function: http://www.emedicine.com/plastic/topic522.htm#target2

Jeff

[Joef]

On that scale, I'm a five ... 4 months post op now ... and I was a 6 when I started ... is is getting better , just to damn slow!! .. at least I sound a whole lot better now and I can talk where people can understand me!

 Joe

[Jeanlea]

Jeff, thanks for the link.  I am a 6 except that I am able to close my eye with effort.  Actually, the less I think about it the easier it will close.  Maybe they gold bar helps that.  I'm looking forward to seeing some movement in another part of my face.

Joe- glad to hear that your speech is improving.  I remember practicing my ABCs in the hospital to help my voice.  Now that I'm back teaching I get a tremendous amount of practice.  People say they don't have problems understanding me.  I do notice when I read aloud to my students that I have to stop and take mini breaks though.  My surgery was about a  month after yours so I'll continue to read how you are progressing.  Your news gives me encouragement.

Jean

[wind6]

Oh my Jeff.....thank you so much for posting the link. I had forgotten about this. I was a 6 after surgery and I am now easily a 3. I really didnt realize how far I had come. I think its time for a happy dance... Wooooo Hooooooo!!