Author Topic: Facial palsy after nine months..Please help me!  (Read 18929 times)

nancyann

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Re: Facial palsy after nine months..Please help me!
« Reply #30 on: February 16, 2008, 07:42:30 am »
Michela:  I am so happy for you that there is a plan to do a nerve graft, whichever one the surgeon decides on - they both help with facial symmetry & movement!
            Hang in there my friend!!!!

Always good thoughts,  Nancy

ps:  My paternal side is from Bari, & my maternal side is from 'Casa Vedere', a small town just south of Naples...
my father (God rest his soul) made the best mozzarella I ever tasted, they had a 'lattaccini' store in Brooklyn, NY; 
 my mother's family had a pork store in Brooklyn.    Boy, could they both cook!!
2.2cm length x 1.7cm width x 1.3cm  depth
retrosigmoid 6/19/06
Gold weight 7/19/06, removed 3/07
lateral tarsel strip X3
T3 procedure 11/20/07
1.6 Gm platinum weight 7/10/08
lateral canthal sling 11/14/08
Jones tube insert right inner eye 2/27/09
2.4 Gm. Platinum chain 2017
right facial paralysis

Kaybo

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Re: Facial palsy after nine months..Please help me!
« Reply #31 on: February 16, 2008, 08:47:20 am »
Michela~
Hello!!
Just remember that the girl that everyone knows & loves will ALWAYS be the precious person on the inside, no matter what the outsiide looks like!!  I have had a 12/7 graft and that really does help.  I have really been looking in the mirror - something I just don't stop & do much!! -- and I really have a pretty good closed-mouth smile.  The reason it really doesn't look that great in pictures is that I am just a "live life to the fullest" and so I always have a big, teethy smile!!
Know that I am always here for you!!
K
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

nancyann

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Re: Facial palsy after nine months..Please help me!
« Reply #32 on: February 24, 2008, 10:39:13 am »
Michela:  Any news yet re: when your appt. with the neurosurgeon will be?   Hope you are well,   Nancy
2.2cm length x 1.7cm width x 1.3cm  depth
retrosigmoid 6/19/06
Gold weight 7/19/06, removed 3/07
lateral tarsel strip X3
T3 procedure 11/20/07
1.6 Gm platinum weight 7/10/08
lateral canthal sling 11/14/08
Jones tube insert right inner eye 2/27/09
2.4 Gm. Platinum chain 2017
right facial paralysis

chrissmom

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Re: Facial palsy after nine months..Please help me!
« Reply #33 on: February 24, 2008, 07:35:26 pm »
Michela,
Thinking of you and wishing you the best. 
Rita

OMG16

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Re: Facial palsy after nine months..Please help me!
« Reply #34 on: February 24, 2008, 10:22:23 pm »
Michela I am glad to hear you have a plan.  I agree with Kaybo you are a wonderful person and that is what matters most.  Let us know when your surgery is and maybe you can post pics like Nancy did.  Many kisses to your forehead.  :-*  :-*  :-* 16
I believe you are given choices in life and it is not what has happened to you that defines who you are.  It is how you handle the situation and finding the positive in an almost hopeless situation that counts the most.  My son is my hero and I have had the pleasure of learning this from him.

michela

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Re: Facial palsy after nine months..Please help me!
« Reply #35 on: February 28, 2008, 09:11:48 am »
I am well thank you all for thinking about me!! I am still waiting for the call of the neurosurgeon and I am quite nervous about it; when I talked to him, it seems that he would call me back to let me know about the matter in a while, instead it's two weeks that I am waiting for his call, trying to call him at the office, but he is always very busy and can't talk to me..
Tomorrow I will go back home ( I study in another city, where I don't have internet,it's quite expensive :( ) and go to his office to meet him when he stops working..Oh my God! Ihope that this story will be soon over!! I hate waiting for something..Thank you all, NancyAnn, Rita and 16, and Kaybo too, you are all great!
A big big kiss!
Michela

nancyann

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Re: Facial palsy after nine months..Please help me!
« Reply #36 on: February 28, 2008, 09:39:56 am »
Thanks for the update Michela - please continue to write when you can & let us know how you're doing.

Always good thoughts from your American paisano.

Nancy
2.2cm length x 1.7cm width x 1.3cm  depth
retrosigmoid 6/19/06
Gold weight 7/19/06, removed 3/07
lateral tarsel strip X3
T3 procedure 11/20/07
1.6 Gm platinum weight 7/10/08
lateral canthal sling 11/14/08
Jones tube insert right inner eye 2/27/09
2.4 Gm. Platinum chain 2017
right facial paralysis

OMG16

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Re: Facial palsy after nine months..Please help me!
« Reply #37 on: February 28, 2008, 01:32:11 pm »
We will be waiting to hear from you when you get access to a computer.  Good luck and know that we are all thinking of you and wishing you the best.  :-* 16
I believe you are given choices in life and it is not what has happened to you that defines who you are.  It is how you handle the situation and finding the positive in an almost hopeless situation that counts the most.  My son is my hero and I have had the pleasure of learning this from him.

Kaybo

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Re: Facial palsy after nine months..Please help me!
« Reply #38 on: February 29, 2008, 04:31:31 pm »
Nancy (& everyone)~
Just wanted to let you know that I am having a consult with Dr. Byrne at John Hopkins on March 19th (my wedding anniversay-we'll get to go to a real restuarant to celebrate!) for the Temporalis Tendon Transfer (T3).  Of course, if he sees my pictures and says that there is NO hope, I will cancel the appointment.  I am still talking to the insurance about whether or not they will cover it "in network," but we just decided to "eat" the consultation cost to check it out.  Wish me luck!!!  Thank you, thank you, thank you Nancy for sharing about this and leading me this way!!   :-*
K
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

nancyann

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Re: Facial palsy after nine months..Please help me!
« Reply #39 on: February 29, 2008, 05:33:43 pm »
Thank you K, but it's actually Pattibobatti, not me, who is the trailblazer.  We have HER to thank for finding Dr. Byrne.   I just grabbed onto
her coattail !! 

Great way to celebrate your anniversary:  the consultation, then the great seafood dinner - ENJOY both !!

Always good thoughts,  Nancy

ps:  Keep positive thoughts - this procedure was designed for ANs & other tumors that cause paralysis - time frame not an issue  (so I have read).
It's for those with NO chance of facial nerve impulses returning.
2.2cm length x 1.7cm width x 1.3cm  depth
retrosigmoid 6/19/06
Gold weight 7/19/06, removed 3/07
lateral tarsel strip X3
T3 procedure 11/20/07
1.6 Gm platinum weight 7/10/08
lateral canthal sling 11/14/08
Jones tube insert right inner eye 2/27/09
2.4 Gm. Platinum chain 2017
right facial paralysis

Angela

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Re: Facial palsy after nine months..Please help me!
« Reply #40 on: March 19, 2008, 03:07:09 pm »
After removal of "Timmy the Tumor", I had total facial paralysis for 2.5 heart-wrneching years before getting the nerve graft 4 months ago.  MY FACE JUST STARTED MOVING last week!  PRAISE GOD!  The muscle contractions are involuntary but a joy nonetheless!

Michela (and anyone else), have you gotten an EMG?  I had 2 different kinds.  The one before nerve graft was to test the potential fillibration.  My results were dismal but better than nothing and being paralyzed forever.
ongoing issues: SSD, some facial paralysis, dry eye, bad balance, tinnitus

Feb'05 Stanford- 4cm x 3 x 3 "Timmy the Big Fat Tumor" removed via 13hr Trans Lab
Nov'07 Stanford- 2hr nerve graft
Mar'08 FACE STARTED MOVING, PRAISE GOD!Sep'10 Stanford- cyberknife for 2nd tumor "tiny tommy"
Mar'12 :)

4cm in Pacific Northwest

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Re: Facial palsy after nine months..Please help me!
« Reply #41 on: March 19, 2008, 07:19:26 pm »
Angela,

My 4cm’s name was Ted. Lets hope Ted and Timmy are history…

RE
MY FACE JUST STARTED MOVING last week!


That is absolutely fantastic news. Congratulations!


Cheers,

4
4cm Left, 08/22/07 R/S 11+ hr surgery Stanford U, Dr. Robert Jackler, Dr. Griffith Harsh, Canadian fellow Assist. Dr. Sumit Agrawal. SSD, 3/6 on HB facial scale, stick-on-eyeweight worked, 95% eye function@ 6 months. In neuromuscular facial retraining. Balance regained! Recent MRI -tumor receded!

OMG16

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Re: Facial palsy after nine months..Please help me!
« Reply #42 on: March 20, 2008, 12:15:12 am »
4 that is awesome!  Now you can ride your bike with no hands and facial movement.  It will be in no time we will not be able to keep up with you.  Kisses to your forehead.  :-* 16
I believe you are given choices in life and it is not what has happened to you that defines who you are.  It is how you handle the situation and finding the positive in an almost hopeless situation that counts the most.  My son is my hero and I have had the pleasure of learning this from him.

michela

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Re: Facial palsy after nine months..Please help me!
« Reply #43 on: March 20, 2008, 12:29:45 pm »
What a funny joke give a name to the Neuroma!
I think I will call mine Totò (as an old famous actor in Italy)... I think it's important to joke about it, it makes things more easier to think about..
It's wonderful Angela that you can move your face after the graft! What kind of graft did you have?? I will see the surgeon on 7th April and I am looking forward to talk to the doctor!!
Cheers and happy easter! I will eat a little of chocolate egg for you all! :)
Michela

ppearl214

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Re: Facial palsy after nine months..Please help me!
« Reply #44 on: March 20, 2008, 12:50:34 pm »
Hi Michela (LOVE the name!)
Ok, Toto for you (as in Wizard of Oz? Glenda, here, knows I am a Wiz freak) and btw, I call my AN the "brain booger".... best I could come up with.

continued wellness wishes to you....
Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"