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Author Topic: Kind of hard to believe...  (Read 9214 times)

Tod

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Kind of hard to believe...
« on: April 07, 2010, 06:08:33 pm »
...a few days short of eight weeks post and I have voluntary twitching on the left side of my mouth. It ain't easy to do, but it is voluntary, and my wife can see that. A few other muscles I can move slightly or feel the attempt.... far better than even last week where everything felt dead.


A long way to go yet, but I am pumped.

-Tod
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Bob the tumor: 4.4cm x 3.9cm x 4.1 cm.
Trans-Lab and Retro-sigmoid at MCV on 2/12/2010.

Removed 90-95% in a 32 hour surgery. Two weeks in ICU.  SSD Left.

http://randomdatablog.com

BAHA implant 1/25/11.

28 Sessions of FSR @ MCV ended 2/9/12.

saralynn143

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Re: Kind of hard to believe...
« Reply #1 on: April 07, 2010, 06:19:47 pm »
That is so great. Keep up the good healing.

Sara
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MVD for hemifacial spasm 6/2/08
left side facial paresis
 12/100 facial function - 7/29/08
 46 - 11/25/08
 53 - 05/12/09
left side SSD approx. 4 weeks
 low-frequency hearing loss; 85% speech recognition 7/28/08
1.8 gram thin profile platinum eyelid weight 8/12/08
Fitted for scleral lens 5/9/13

Jeanlea

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Re: Kind of hard to believe...
« Reply #2 on: April 07, 2010, 06:45:22 pm »
Whoo-hooo!!!  Any movement is good movement, especially at just eight weeks. 

Jean
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translab on 3.5+ cm tumor
September 6, 2005
Drs. Friedland and Meyer
Milwaukee, WI
left-side facial paralysis and numbness
TransEar for SSD

GRACE1

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Re: Kind of hard to believe...
« Reply #3 on: April 08, 2010, 07:24:28 am »
Good for you!!!

Grace
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Diagnosed 7/06: AN - right side: 1.3cm in transverse dimension, 6mm in AP dimension, and 6mm in cephalocaudal dimension.
GK 12/06- Wake Forest Univ Baptist Med Ctr
MRI 5/07- Some necrosis;  Now SSD
MRI 12/08- AN size has reduced 50%
MRI 12/11- AN stable (unchanged from 12/08)
Next MRI: 12/16

lori67

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Re: Kind of hard to believe...
« Reply #4 on: April 08, 2010, 08:29:53 am »
Yay for twitching!   ;D

Hope this is a sign of great things to come!

Lori
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Right 3cm AN diagnosed 1/2007.  Translab resection 2/20/07 by Dr. David Kaylie and Dr. Karl Hampf at Baptist Hospital in Nashville.  R side deafness, facial nerve paralysis.  Tarsorraphy and tear duct cauterization 5/2007.  BAHA implant 11/8/07. 7-12 nerve jump 9/26/08.

tenai98

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Re: Kind of hard to believe...
« Reply #5 on: April 08, 2010, 12:09:40 pm »
nice twitching  ;D
Jo
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14mmX11mmX11mm left ear
TRANSLAB 04/07/09 2cms at time of surgery
Dr. Benoit and Schramm, Ottawa Civic Campus
SSD ,some facial numbness
Baha surgery sept 22/09
residual tumor 13mmX7mmX8mm
2016 new growth.  25mmX21mmX22mm
cyberknife on June 7

Jim Scott

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Re: Kind of hard to believe...
« Reply #6 on: April 08, 2010, 12:33:23 pm »
Tod ~

May the twitching progress to even more movement!

Jim
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4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

Darren

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Re: Kind of hard to believe...
« Reply #7 on: April 08, 2010, 06:05:33 pm »
Tod-- I too started about that time with voluntary twitching.  mine started at the side of my nose on the post AN side-- I still twitch like crazy to this day-- This GREAT news for you as it is the start of nerve generation based on my own experience! Make sure to eat hot spicy foods to jump start it!

Darren
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Tod

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Re: Kind of hard to believe...
« Reply #8 on: April 08, 2010, 07:44:56 pm »
Thanks all. I feel incredibly fortunate that anything is happening this early, especially since I still have troubles eating and swallowing, but those improving...or my approach is.

Tod
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Bob the tumor: 4.4cm x 3.9cm x 4.1 cm.
Trans-Lab and Retro-sigmoid at MCV on 2/12/2010.

Removed 90-95% in a 32 hour surgery. Two weeks in ICU.  SSD Left.

http://randomdatablog.com

BAHA implant 1/25/11.

28 Sessions of FSR @ MCV ended 2/9/12.

moe

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Re: Kind of hard to believe...
« Reply #9 on: April 08, 2010, 10:24:43 pm »
Yea Tod,
That is EXACTLY what you need to keep up the spirits. Keep pumpin! :)
Maureen
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06/06-Translab 3x2.5 vascular L AN- MAMC,Tacoma WA
Facial nerve cut,reanastomosed.Tarsorrhaphy
11/06. Gold weight,tarsorrhaphy reversed
01/08- nerve transposition-(12/7) UW Hospital, Seattle
5/13/10 Gracilis flap surgery UW for smile restoration :)
11/10/10 BAHA 2/23/11 brow lift/canthoplasty

Debbi

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Re: Kind of hard to believe...
« Reply #10 on: April 09, 2010, 01:09:40 pm »
Awesome news, Tod!!  Voluntary twitches at 8 weeks are just about as good as dark chocolate - heck, maybe better!  Sending you good thoughts for many more twitches!

Debbi
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Debbi - diagnosed March 4, 2008 
2.4 cm Right Side AN
Translab April 30, 2008 at NYU with Drs. Golfinos and Roland
SSD Right ear, Mild synkinesis and facial nerve damage
BAHA "installed" Feb 2011 by Dr. Cosetti @ NYU

http://debsanadventure.blogspot.com

nancyann

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Re: Kind of hard to believe...
« Reply #11 on: April 09, 2010, 03:44:47 pm »
Well this is wonderful news to start off the weekend !  Continued healing Tod.
Always good thoughts,  Nancy
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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

mimoore

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Re: Kind of hard to believe...
« Reply #12 on: May 30, 2010, 02:27:00 pm »
What a wonderful feeling, I remember it well! Here's to lots more!
Michelle  :D
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Retrosigmond surgery on June 4th, 2008 for an AN. 100% hearing loss and facial paralysis (was not prepared for facial paralysis). Size: 2.3 cm, 2.1 cm, 1.8 cm. some tumour remains along facial nerve. Pray for no regrowth. Misdiagnosed for 10 yrs.

Soundy

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Re: Kind of hard to believe...
« Reply #13 on: June 02, 2010, 06:09:24 am »
yay ... Continued good twitches to you ...
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3mm AN discovered Aug 2004
Translab July 2 ,2007
3.2cm x 2.75cm x 3.3cm @ time of surgery

Tod

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Re: Kind of hard to believe...
« Reply #14 on: June 04, 2010, 12:35:46 pm »
Thanks..it has been awhile since I checked in here. I have much more facial movement and can pretty well close my eye most of the time. Since I don't engage in big smiles often and talking is still very difficult, I actually look symmetrical most of the time. However, when I do have to make the effort to speak, I can feel the difference and see it in a mirror.

All things considered, the progress is pretty awesome.

Tod
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Bob the tumor: 4.4cm x 3.9cm x 4.1 cm.
Trans-Lab and Retro-sigmoid at MCV on 2/12/2010.

Removed 90-95% in a 32 hour surgery. Two weeks in ICU.  SSD Left.

http://randomdatablog.com

BAHA implant 1/25/11.

28 Sessions of FSR @ MCV ended 2/9/12.
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