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Author Topic: Going to Wisconsin!!!!!  (Read 6557 times)

m4guzman

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Going to Wisconsin!!!!!
« on: November 12, 2010, 09:22:59 am »
Hi all

For those of you who don't know me,  I had mid fossa about 18 months ago and was left with no hearing, wonk headed and facial palsy.  My face has improved about 60 70 percent.  (my left corner of my mouth does not move)
Last month I went to see a neurologist who told me that my face will never come back and that I should just get used to it.
He took all the hope away from me in 1 second.  I cried for about an hour and then I decided that he was wrong.  I am not
giving up so easy!  So . . .  I am heading to go see Jackie Diels next Monday!!!!  She has an unexpected opening.
I am going for 3 days.  I will try to take some before and after pictures.

wish me luck!

Marybeth
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1.5cm on left side MRI 2/2/09
Some hearing loss
Thinking about surgery

Debbi

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Re: Going to Wisconsin!!!!!
« Reply #1 on: November 12, 2010, 09:42:17 am »
This is so exciting, Marybeth!!!   I know you are going to be really happy you did this, and I think Jackie is going to prove that neurologist WRONG.  Jackie will take lots of pictures while you are there and she will email them to you if you ask her to.   Wow - so exciting!!!!

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

saralynn143

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Re: Going to Wisconsin!!!!!
« Reply #2 on: November 12, 2010, 09:59:17 am »
I'm so excited for you Marybeth! Obviously that unexpected opening means luck is already with you.

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

Brewers7

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Re: Going to Wisconsin!!!!!
« Reply #3 on: November 12, 2010, 10:05:34 am »
Keep us posted.  I am considering a trip north too.
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Translab surgery 12/15/2008 followed by CSF leakage repair and 3 additional surgeries for MRSA of the brain (NOT typical) SSD,  facial and vocal cord paralysis, numerous reconstructive surgeries, Transear 12/2010

GRACE1

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Re: Going to Wisconsin!!!!!
« Reply #4 on: November 12, 2010, 10:58:25 am »
Good for you!!  Best of luck.

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

keithk

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Re: Going to Wisconsin!!!!!
« Reply #5 on: November 12, 2010, 11:21:24 am »
Wisconsin in winter. Dress warm.
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AN surgery 8/19/10, 9.5 hrs
8mm x 5mm left side
Retrosigmoid, Drs Reichert & Harvey
Severe hearing loss in the left ear before surgery. SSD after surgery. Balance issues. Tinnitus (mild). Buzzing in left ear.
BAHA implant surgery 11/17/10
BAHA activation 2/1/11

Lizard

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Re: Going to Wisconsin!!!!!
« Reply #6 on: November 12, 2010, 02:29:56 pm »
Great news, can't wait to see the pictures!  And another point for team never give up!
Liz
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Left AN 2.5CM,retrosigmoid 11/2008, second surgery to repair CSF leak. 
Headaches began immediately.  Dr. Ducic occipital nerve resection, December 2011!!!!!

"When you come to the end of your rope, tie a knot and hang on"
-Franklin D. Roosevelt

Jim Scott

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Re: Going to Wisconsin!!!!!
« Reply #7 on: November 12, 2010, 02:56:48 pm »
Marybeth ~

Congratulations on taking this giant step to normalcy!  Jackie Diels is famous for her successes with AN patients (ask Debbi).  That you used an insensitive doctor's negativity as the impetus for your decision is admirable as well as ironic.  I wish you great success in Wisconsin!

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.

Karen

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Re: Going to Wisconsin!!!!!
« Reply #8 on: November 12, 2010, 06:30:43 pm »
Good Luck!  Jackie is the best  in her field I trained with her for almost 4 years, One 2 day trip a year.  She helped so much.  Karen
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Karen
     Surgery 12-17-03, nerve graft 1-04, 3.5 cm, facial paralysis, numbness and no hearing in left ear

jazzfunkanne

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Re: Going to Wisconsin!!!!!
« Reply #9 on: November 13, 2010, 09:16:32 am »
Never give up am still getting movement after nearly 4 yearsx
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over 4.5cm AN removed dec 06

m4guzman

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Re: Going to Wisconsin!!!!!
« Reply #10 on: November 19, 2010, 08:37:36 am »
Thanks everyone for all your Well Wishes.

I am back!   And so is my HOPE!  I am very very Happy!   I can not say enough about Jackie.  She is just wonderful.  She is everything
I thought and more.  The best part about Jackie is that she understands!  She listens to what you have to say and then she explains it to you.
My main concern when I went out there was that the left side of my mouth did not move when I smiled.  She showed me that it does
actually move only the chin and neck muscles were pulling the corner of my mouth down to look like it was not moving.  Yea!

Any one out there with facial palsy should go see her.  Don't Give UP!  There is hope!

I spent 3 days with her and it was great because she was training another therapist.  The first day  jackie proved to me that my face had lots of
movement.  By looking at me you would have thought I had little  movement. Jackie examined my facial movements by looking and taking pictures.  then she gave me exercises to do.  Not bad.      I went back to my room at night and practiced.  The next day we spent going over some new
exercises and some coordination movements.  This is to help with the synkenisis.  This is harder then the exercises because you have to concentrated
really hard.   the third day we spent going over everything that I learned. 

I am going to work hard to make it work.  I am so excited.  I will ask her to send me the pictures. 

My Hope is back!!!

Marybeth
Logged
1.5cm on left side MRI 2/2/09
Some hearing loss
Thinking about surgery

Jim Scott

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Re: Going to Wisconsin!!!!!
« Reply #11 on: November 19, 2010, 02:32:55 pm »
Marybeth ~

I'm delighted to learn of your success with Jackie Diels.  She is a blessing to many.  Regaining hope is crucial to our well-being and now, you have that.  Congratulations!

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.

Debbi

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Re: Going to Wisconsin!!!!!
« Reply #12 on: November 20, 2010, 08:48:07 am »
Hi Marybeth-
I was so glad to see your post - been thinking about you this week!  So glad that your visit with Jackie went well - sounds like my first visit with her.  I, too, thought that my mouth wasn't moving, but learned that it DOES move, it was just being pulled by surrounding muscles.  If you stay with the exercises, I promise you that you will see HUGE improvements with the way your mouth moves. 

Keep working the exercises and stretches - and if you get discourage, call me and I'll cheer you on!

Sending you a BIG hug!

Debbi
Logged
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

Angela R.

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Re: Going to Wisconsin!!!!!
« Reply #13 on: November 21, 2010, 02:03:24 pm »
That is amazing.  So glad you didn't just listen to him!!!
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6/2010 translabyrinthine surgery, total hearing loss in the right ear
10/2007 gamma knife surgery

GRACE1

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Re: Going to Wisconsin!!!!!
« Reply #14 on: December 22, 2010, 02:36:48 pm »
Great news!   I am so happy for you.

Grace
Logged
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
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