ANA Discussion Forum
Post-Treatment => Facial Issues => Topic started by: webwrestler on August 10, 2007, 10:21:20 am
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I am 4 months post op, with no improvement to my left side due to facial palsy. I had the tumor completley removed but it stretched my facial nerve and left me with palsy on my left side. My doc said it would return just be patient, yah easy for him to say...
I met with another doctor and he said it should be back to about 80%, but not too worry he still expects it to recover. I go back to work on Sept. 1 and am quite anxious as I am in corporate sales and worried about what will be out there. I went from being an extrovert to an introvert, literally overnight on May 1, 2007. I get the odd twinge or zapping feeling, but maybe once a day at night for about half a second...oh wait just had one....weird...
I am expecting to much in only 4 months post op? I think I have the answer already but this site has be great as a moral booster when I read other peoples successes. Yah, I know, I am alive and that is most important...If i hear that one more time from a family member..errr@! That is so annoying....
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Hey webwrestler, Geez, I hate hearing about another person with facial problems - I just cringe...but, glad to hear you're having the 'zaps'. Most people online here who've had a nerve stretched DO get movement back, HANG IN THERE - it is a slow process. Some have taken upwards of 2 years, but you're already having the twinges so my heart is glad for you. I know it's unnerving.
I know what you mean re: going from extrovert to introvert - I'm over 13 months out with no movement but my nerve was cut & reattached, real bummer. I believe you're going to be okay, even if it doesn't feel that way right now.
Work is difficult for me with everyone staring, etc - I work in a hospital, took some getting use to. Good luck my friend, Nancy
ps: no pun intended re: using the term unnerving - but pretty funny, huh?...Hi there Ellis, hope all's well!!
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Sorry to hear about your facial problems but like Nancy said you are getting ZAPPING feeling and that sounds like a good sign. I'm 7 months out and I wish I could get some zaps. I called Dr. Brackmann on my 6 mts and he told me he was 99% sure I would get movements back. All I can do is wait and hope. Hang in there!
Ellis
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thanks for the feedback. just realized i never left my name, my mother didn't name me webwrestler.lol. It's Justin. Yah my surgeon said he "guaranteed" it will come back and to be patient, patient. That is pretty bold but he has 20 years experience doing AN's so I trust his word. I will just sit back and be patient. :)
Justin
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Goodmorning,
You are only 4 months out. It seems like forever, but your facial nerve likes it that way!! I am glad that you have read about all the good recovery people have had. It just takes soooo much time..... And don't worry, not too many of us have any patience either!
I just wanted to cheer you up and tell you that I did not have ANY movement for 9 months. Then one day the corner of my mouth just started to move. And now I have a full smile, etc. I do remember thinking that I will never have any movement but if you looked at me now, you would probably not think I had anAN.
All those twitches are very important! Every time I see something looking better, I always have the twitches before!!!
Good luck to you,
Pattibobatti
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YAHOOOOOOOOOO! Patti, just what I wanted to hear....I'm half smiling as I type....LOL :)
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Justin,
I also had total facial paralysis after surgery. My facial nerve is intact, but it was severly stretched. My first movement came at three months, but you would measure it in millimeters. I'm nearly two years now and I can make a smile. I don't think most people notice it now, especially those that had not known me before. I'm still getting twinges so I hope I continue to get improvement. Gains are measured in months. I did return to work as a teacher two months after surgery. People around you adjust to how you look. I find that most other people are really too wrapped up in themselves to really notice how different we are. A confident attitude helps to overcome the physical looks. Good luck to you.
Jean
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Hey Justin,
I don't post on here much but felt I should share my experience with you a little. It took me 5 mnths to get my first movement. I work as an Administrator for a dental practice. I went back to work with my paralysis, boy was it hard. I didn't think I could do it. I really had no interest but my job needed me. I was very insecure at first. Especially because I wore a clear patch over my eye for several months. Anyways, I think getting back into your routine helps you not focus on your face so much. Trust me- I am no saint. I don't have a normal smile yet so I don't smile in public. My upper lip will raise but my lower lip has been the same since day one. I am trying to let you know it is different for everyone so give it some more time. Good luck.
Lisa
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Hi Justin. I'm also encouraged by the posts and the need for patience. Truthfully, I must admit that when I went into surgery I was not aware that my facial nerve would not be functioning post surgery. The reason is that obviously my research was not thorough enough, and I had assumed that facial nerve preservation would not result in what turns out to be extensive facial nerve recovery.
That being said, each case appears to differ regarding facial nerve function. You cannot know what it will be like on the other side.
I can't say that it would have changed my mind anyway, but knowledge is power for everyone.
Recovery sounds like day to day and month to month but it appears we have alot to be optimistic about! Take care and keep us posted. Neal
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Greetings-
I am 4 weeks post op (middle fossa approach) - Excellent nerve function until last Friday-
Woke up with facial tingling - as the day progressed the tingling and symptoms got worse....could not close left eye- smile on left side drooped, tonque tingling on left side.....Called physicians ( 360 miles away) and he diagnosed Bells Palsey- RX high dose prednsione and famvair....Follow up appointment Monday so I will know more then. My concern is the left eye is 4 times larger than the right. I look cock-eyed and it hurts....Any-one out there have any sugestions.
Take care and keep us all posted
Luckylady
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Hi Luckylady - I PM'd you this am..... My eye looked larger on the AN side because of the paralysis (not 4 times larger though). Since my temporalis tendon surgery, I think the doc pulled the lower eyelid up more so it looks about equal again (YEAH FOR ME). I hope your visit goes well Monday, & you hear this is just temporary. For other AN patients who got Bell's Palsy days/weeks after surgery, their facial nerve came back, so keep good thoughts! Nancy
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Hi,
If your eye hurts make sure it is not getting too dry. It is real important to use drops, gel, etc. if you are not blinking well. If it is getting red, it is too dry.
Hope that helps,
Patti
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Wow these posts are so encouraging! I am 5 months post op and probably have 30% of my facial nerve back. I do have tone so when I'm not talking or smiling you can't even tell! I'm an elementary teacher and when I first started I was a month post op so you could really tell....oh the comments I had! The kindergarteners were so cute they checked up on me everyday to see if my face has woke up yet! Now that there getting used to it the comments are slowing down! I was told that in a year what I had back was going to be it. The Dr.'s are still hopeful that I will get everything back! A measuring stick for me is when I get my dimple back. :) I just joined this group and am very glad I did! Being from South Dakota there aren't too many cases of this so it's nice to hear from people that have went through the same thing!
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23 year old,
I had my first surgery in 1988 when I was 25 for 6x3x3 cm tumor. When we are young, these tumors grow so large and go unnoticed for a long time! I woke up to a perfectly functioning facial nerve but 10 days later, when the steroids were discontinued, I had facial palsy. The surgeon also told me that at one year whatever I had regarding facial nerve will stay with me forever. Well, not so. It took two years for my face to look as if pre-surgery and right before my second surgery, 19 years later, I started to cry, albeight slower and less, out of my AN eye! The point I am trying to make is that our bodies recover over time and it is lost to surgical follow up. Don't necessarily believe everything your surgeon says and have hope for yourself!
Eve
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Thanks for the words of encouragement! It's nice to hear from another young person who had a large tumor! I find mine by pure luck b/c the only symptom I was having was slight loss of hearing so they just about dismissed it...Thank God they didn't! Hopefully God will give me the strength to wait patiently for my face to return back to it's pre-surgery form!
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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....
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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
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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.
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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
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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!
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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
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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
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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! ;D
Eve
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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
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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! :D
Lori
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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
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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
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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
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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
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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
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Hi David and welcome. I can assure you that if you were acting right now - all of us forum members would be in the front row to cheer you on!
I was also told that I should probably start to see some facial improvments around 3 months, but i didn't until about 8 months. Not to scare you - everyone is different, and hopefully it won't take that long for you. When you do start to see some movement, I suggest going to a PT who does facial PT to help get things moving and to prevent synkinesis.
Good luck to you in your healing and be sure to give us a good plug when you go up there to collect your Oscar! ;)
Lori
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Hi Lori
Thank you so much for the welcome. It's great to be here. I was dealing with this alone -- after a month my support group began to dwindle -- I was "yesterday's news" as a cynical friend on mine suggested. And no one from the clinic was providing any suggestions. Now I know what to expect and can wake up in the morning without feeling horrible that there has been no improvement.
Thank you.
David
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Hi Phyl
I checked around to see if I could find a posting from Mark. Since I'm new here I wasn't sure how to search. Could you point me in the right direction? I'm pretty sure Mark will remember me from Zodiac. I'd like to get his input on how he dealt with the industry.
Thanks
David
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Hi David,
I'm sorry if I confused you... Mark, unless under an alias, has not posted here to my knowledge. The posts I reference are those made by other users of this discussion forum.
If you go to the top of any page here and look for the "Search" field, type in "Mark Ruffalo"... there is 1 complete page of posts/threads done by users here, as many track his progress post AN surgery. If you do, by chance, get to speak to him, let him know that he has been a quiet inspiration to many here... one who is in the public eye and walking in the same shoes as many here.
I hope that helps... and again, welcome! Looking forward to your further participation in these forums boards.
Phyl
Hi Phyl
I checked around to see if I could find a posting from Mark. Since I'm new here I wasn't sure how to search. Could you point me in the right direction? I'm pretty sure Mark will remember me from Zodiac. I'd like to get his input on how he dealt with the industry.
Thanks
David
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Hi Phyl
Thanks for the clarification on Mark. I will look for him locally -- the only place I've met him is on-set -- but I may be able to find him in town. If I do, I will make sure to let him know that he has been an inspiration. He's a very low-key genuine kinda guy and I know he would appreciate that. Thanks again.
David
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HI,
I AM NEW TO THE GROUP. MY SITUATION IS A LITTLE DIFFERENT FROM YOU GUYS IN THAT I DIDN'T HAVE A TUMOR REMOVED I HAD ARTERIES/VEIN REMOVED WHICH RESULTED IN A STRETCH INJURY TO MY FACIAL NERVE. I WOKE UP WITH COMPLETE PARALYSIS OF THE LEFT SIDE OF MY FACE. PARALYZED SWALLOWING NERVE AND WAS FED VIA A FEEDING TUBE DOWN MY NOSE FOR A MONTH AND DAMAGE TO MY INNER EAR. THE SURGERY WAS MVD FOR HEMIFACIAL SPASM. MY DOCTOR SAID THAT MY RESPONSE WAS SIMILAR TO ACCOUSTIC NEUROMA COMPLICATIONS. I AM IN MY 7 MONTH WITH LITTLE MOVEMENT. I DO HAVE THE NASOLABIAL FOLD (SMILE LINE) AND A TINY GRIN. I HAD A PLATINUM WEIGHT PUT IN MY EYE 6 MONTHS AFTER MY SURGERY. I WAS WONDERING.....DOES ANY ONE KNOW WHEN THE EYELID FUNCTION USUALLY RETURNS. I WAS TOLD THAT THE MOUTH AND EYE COME IN FIRST. I'M SURE THAT IT HAPPENS DIFFERENT FOR MANY PEOPLE BUT IF YOU GUYS CAN TELL ME WHAT YOU HAVE HEARD AS FAR AS WHAT COMES IN FIRST, SECOND, ETC. )EYE, MOUTH, FOREHEAD, ETC. I WOULD LOVE TO LEARN FROM YOU. I AM 36 YEARS OLD. MOM OF A 3 AND 5 YEAR OLD.
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Hi CROOKEDSMILE: Nice to meet you. Boy, you have been through it - glad to see you found us!
I can only speak from what I've read on this forum - I ended up with total paralysis - never regained any movement. But, by the sound of it, since your nerve was stretched, & you have the nasolabial fold & a tiny grin, I'd bet you will continue to have improvement, it just takes time (a snails pace!).
My neurologist told me the eye area is usually the last to regain movement, but that hasn't always been the case by what's happened to others here.
Best wishes to you, Nancy
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I was always told the eyelid movement comes back first as this requires the least anount of function from the facial nerve to work. This was true for me - eyelid back and no more eye drops on one random day 6 - 8 months post op.
Mouth started showing tiny movements and twitches at about the 3 month post op mark. I am just about teeth smiling confidently now (18 mths post op). I reckon about 90%.
Forehead (as Docs said) has been the slowest. Just starting to see slight control and minimal movement. Doesn't worry me too much as fewer lines...!
So, my Docs have been on the money with their predictions.
Hope this is of some help.