Facial Palsy

[Meagan]

i was 25 when i was diagnosed and had hearing loss when i was younger and never knew....january 3rd 2008 will be my one year and they told me one year all back to normal....then after a few months...said maybe two years....they have no idea...my ent told me it will all come back since i get the tingles and my neuro said we might have to do plastic surgery....they work together and have contradictory thoughts so i say we all need to hope and pray and not let them tell us never....we got through the surgery....we can get through this...and anything else this stupid tumor throws at us....

[nancyann]

Meagan:  I never got the tingles, so I believe it MUST be a good thing....   17 months post op I recently had the temporalis tendon transfer surgery, the right side of my face is still paralyzed, but it took away the droop & I will have a Mona Lisa smile.   This surgery is relatively new & I am very grateful to have been able to have it done.
Don't give up hope on your face, tingles are a good sign...there are 1 or 2 others that began getting tone & movement back after 2 years.
Wishing you & everyone on this forum HAPPY HOLIDAYS & GOOD THOUGHTS,    Nancy

[Meagan]

Thanks Nancy....i know you are an inspiration to us all....my mom always reads your posts and talks about how strong you are...you always have positive things to say about people and just are a good naturered person...from everyone thank you for your constant support...you really are a strong person.

[nancyann]

It's all 'smoke & mirrors' Meagan, I'm not as strong as you think,  this situation gets me down to;  but, we have to take a deep breath & keep on truckin'.
Well, tomorrow is your 1 year post AN anniversary.   I wish you more 'tingles' & an eventual smile!!
Always good thoughts,  Nancy

[Meagan]

i actually get annoyed when my husband says "you are so strong" because it is harder when you break down....so i get it...but you really have helped people so thanks!

[webwrestler]

Hi all,

I thought I would post and update.

As of January 1, 2008 I am 8 months post op (translab). I lost my hearing and had some facial paralysis, okay my left side didn't work at all post op. 1 month, 2 month, 3 month, 4 month, 5 month, 6 months go by and nothing. It was hopeless with all the reading I have done and feedback I get I was not convinced I would get back my face. Then as i am waiting to pick my wife up from the bus stop on our way home after work I was looking into the rear view mirror (as vain as I am) and I saw a slight twitch. To anyone else there was nothing there but to a post op AN'er my whole left side just smiled at me. Was it true or was I seeing things? Over the next couple of days in November it started to move more and I immediatley booked an appointment with my facial physio. She gave me exercises to do which I do sporatcially (bad Justin) until this day. I can proudly say that I do not have a droopy dog left side of my face any longer and it has only been 8 weeks. Anybody looking at me without me smiling, or talking would not notice a difference. I can move everything below my eyelid including cheek, smile, chin, ear about 60%. I do not have movement in my forehead yet but I have the rest of my life to get that back. It is so exciting...it seems like yesterday I had the surgery, I cannot believe how fast time passes by.

Moral of the story....DON'T GIVE UP. Everyone will have a different opinion to when your face will move again, trust me, I heard never, 7 weeks, 5 months, 13 months, etc.  Your body is an interesting macihine and will fix itself within time. I will never regret my decision to have surgery over radiation. I knew what the ultimatums were and I rolled the dice. I came up a winner because I am still alive and leading a normal life, exactly how I did pre-op (except for the stress when I found out and had to make a decision. LOL). I have a beautiful wife, 2 year old daughter and child on the way. That is what I live for.

It is easy for me to sit here and write about my experience but I want to stress to anyone that has been diagnosed, This is not a death sentence. It some weird, quircky way I am glad this happened to me. It was an eye opener to how delicate life reallly is. Of course a broken arm would have been easier but it was an AN instead.

Justin

[lori67]

Justin,

Hooray for the movement in your face!!   You must have been thrilled!  I'm not fully functional - face wise - yet, but I do have some movement, so it's a start.  I remember the first little twitch I saw while washing my face one night - I came running out of the bathroom like the house was on fire or something to tell my husband.  I know you were equally excited!

I'm glad you have such a great family to keep you strong through it all.  I know my kids have been the reason I've gotten up many days when I wouldn't have otherwise.  Sometimes it's nice to not have the option to pull the covers over your head.  Well, maybe it's not nice, but it's good.  I'm hoping that if my kids learn anything from me, it's to be strong and graceful in the face of adversity.  And how to make a bed... that would be a useful skill too.

Good luck on the upcoming baby!   It's a good thing you didn't break your arm - sounds like you'll soon have your hands full!

Lori

[jerseygirl]

Lori,

Don't forget cleaning one's room with the kids. I had a hard time yelling at my teenager for not cleaning his room but all of this has changed now. My voice is no longer weak! Receveries from AN surgeries do happen! 

   Eve

[nancyann]

Justin:  YEAH !!!  GREAT NEWS !!!!  I am so happy for you.  This is a BIG DEAL !!!!!   So glad for you & your family.   A big smile isn't far behind !

Always good thoughts,  Nancy

[lori67]

Eve. 

Being Italian and from New Jersey - I usually don't need to use my voice to get the kids moving in the right direction.  I've got that Mom evil-eye thing down pretty good - and I usually talk more with my hands than anything else anyway!   

Lori

[Jeanlea]

Justin,

Congratulations!  I can certainly understand the joy you can feel with a millimeter of movement.  That's how I started out.  I got my first movement at just over 3 months.  To most people it still looked the same, but I knew when I scrunched up my nose the left side would also move just the tinest bit.  It gave me some hope.
Even though my face was totally paralyzed at first I still had the "evil eye."  It works well on my kids and even better on my students at school.  lol  Recently one of my students told me my smile is better since the beginning of the year.  Even at 28 months post-op I'm still seeing improvement.  It may be exceedingly slow, but it's coming back.
I've learned a lot about patience from this.  My computer recently died and my husband ordered me a new one.  He said it might take a while to come, about two weeks.  I remember thinking, "Two weeks?  That's nothing." 
I wish continued facial recovery for all of us that need it.

Jean

[Chambo]

Justin - great news mate! Well played!

Haven't posted here for sometime, so my apologies.

I am now 18 months post-op (3.5cm + / Translab / full LS facial paralysis / nerve in tact) and was beginning to lose some faith at around the 12 mth mark when improvement stagnated somewhat. I must say though over the past couple of months I have noticed some big improvements.

- my eye is back to normal - full blink and no need for any drops whatsoever; no tape at night needed. This recovered probably 7 to 9 mths post op

- smile is getting much better (or so my fiance tells me!) - can see a lot more teeth on the left side than a couple of months ago. Am getting married in March so am hoping the rapid improvement continues... and quickly! hehe

- forehead - i can finally see it trying to move which is a good sign. Has been the slowest but, as Justin said, we have our whole lives for this puppy to return. At least it reduces forehead lines!

- the twitches (incl rabbit twitch etc) - i must agree with others. These are GOOD! Usually a couple of days after twitches i notice some improvement in the area of the twitch.

- going to see a PT now to manage the synkenisis and also to see if she has any other suggestions.

Finally, life is finally feeling pretty much back to normal. Feeling as fit as I have ever been. Looking like the old me in photos again. More confidence.

Oh, and no more spewing on long runs (i always thought i was just soft!).

So to those early on with facial paralysis, have faith. I was told "3 months" and I'd be back to normal - my Docs were that confident (and they are world leaders in their field). 18 months later and I feel like i'm going to fully recover... well may be except for a weaker left forehead movement! I can handle that

Cheers

Simon

[LADavid]

Hi Justin
Great news for you and thank you so much for the update -- and a thanks to all of you.  I can't tell you how much I am encouraged by what I've read today.  I had my surgery in the beginning of December.  The surgeons all said at the time -- you'll be fine in two months.  Two months have passed and not a movement.  I thought I was doing something wrong.  What makes this difficult is that I am an actor.  Not that I would have been doing anything with the writer's strike, but now that it's being settled I wanted this to end so I could get back to work.  Actors without full facial movement are just not actors.  Now I know what the reality is.  It is much easier to deal with facts than it is to deal with the unknown. 
Thank you all so much for sharing your experiences.
David

[ppearl214]

Hi David and welcome.   Good to see you here.  Well, if we can't blame you on the "repeats" being shown on the telly...

Mark Ruffalo (actor) has been a terrific inspiration for many here on this website. We all follow his AN journey and see how well he is doing, even with some partial facial paralysis, I believe, still occuring.  If you do a "Search" here on the forum site, I believe you will see posts/commentaries about Mark and his journey........many of us are also following Dusty Hill of ZZ Top as he was diagnosed last year with an AN (at last update)...... many in the enterntainment industry dealing with being members of our "elite" little club (as I like to call it).

Sending you wishes of wellness... and again, welcome.
Phyl

Hi Justin
Great news for you and thank you so much for the update -- and a thanks to all of you.  I can't tell you how much I am encouraged by what I've read today.  I had my surgery in the beginning of December.  The surgeons all said at the time -- you'll be fine in two months.  Two months have passed and not a movement.  I thought I was doing something wrong.  What makes this difficult is that I am an actor.  Not that I would have been doing anything with the writer's strike, but now that it's being settled I wanted this to end so I could get back to work.  Actors without full facial movement are just not actors.  Now I know what the reality is.  It is much easier to deal with facts than it is to deal with the unknown. 
Thank you all so much for sharing your experiences.
David

[LADavid]

Hi Phyl
Thank you for the reply.  I worked with Mark briefly on Zodiac.  I will certainly see if I can locate him.
Thank you!
David