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Author Topic: I'm almost afraid to say this...but...  (Read 5921 times)

Syl

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Re: I'm almost afraid to say this...but...
« Reply #15 on: February 15, 2009, 03:42:36 pm »
Marci:

Thanks for sharing your great news. I like good news.

Syl
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1.5cm AN rt side; Retrosig June 16, 2008; preserved facial and hearing nerves;
FINALLY FREE OF CHRONIC HEADACHES 4.5 years post-op!!!!!!!
Drs. Kato, Blumenfeld, and Cheung.

mimoore

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Re: I'm almost afraid to say this...but...
« Reply #16 on: February 15, 2009, 04:03:31 pm »
YAHOOOOOOOOO Heading in the right direction!!!!!!!
« Last Edit: February 16, 2009, 02:19:20 pm by mimoore »
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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.

MAlegant

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Re: I'm almost afraid to say this...but...
« Reply #17 on: February 15, 2009, 04:27:24 pm »
You guys are the best.  And no, I am not drunk.   ;D
Marci
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3cmx4cm trigeminal neuroma, involved all the facial nerves, dx July 8, 2008, tx July 22, 2008, home on July 24, 2008. Amazing care at University Hospitals in Cleveland.

Lainie181818

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Re: I'm almost afraid to say this...but...
« Reply #18 on: February 15, 2009, 05:03:29 pm »
Fantastic news Marci, hope it continues.
Lainie.
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LADavid

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Re: I'm almost afraid to say this...but...
« Reply #19 on: February 15, 2009, 06:31:56 pm »
You're not drunk????!!  Why?  ;)  Looks like I'm a bit behind in joining your mini-yipee, but I'm still here -- way to go, Marci!!!!
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Right ear tinnitus w/80% hearing loss 1985.
Left ear 40% hearing loss 8/07.
1.5 CM Translab Rt ear.
Sort of quiet around here.
http://my.calendars.net/AN_Treatments

elderbirds

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Re: I'm almost afraid to say this...but...
« Reply #20 on: February 15, 2009, 07:34:37 pm »
Marci,
I noticed twitches and movement on my "7th month mark"  I thought I was crazy and had an appt with the surgeon soon after.  He said that's what it will do and continue to improve.  I am at 10 months post op now and have noticed great improvements.  Of course I am greedy and want more, more, more now, but hang in there you will get there.  My surgeon told me between 5-8 months you seen a great jump and then again around a year!  great news
Hope
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Kaybo

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Re: I'm almost afraid to say this...but...
« Reply #21 on: February 15, 2009, 07:49:27 pm »
YIPEE-SKIPY!!!  Doing the Happy Dance for you!!   ;D

K
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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!

AMD

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Re: I'm almost afraid to say this...but...
« Reply #22 on: February 15, 2009, 08:57:01 pm »
Marci,

so glad to hear of your improvement.  Sounds like what I am experiencing with my right arm/shoulder.  It's great to hear that others are improving and that ity just takes time.  I hope things continue on this path for you!

-Amy
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Left side 1.7 cm AN diagnosed 7/30/08
Misdiagnosed for 8 + years
Surgery, Sub-occipital, 11/17/2008 at Indiana University Hospital
Left SSD
Tumor much larger than expected. Facial nerves intact, but had RARE swelling resulting in brachial plexus injury and tracheostomy after surgery.

suboo73

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Re: I'm almost afraid to say this...but...
« Reply #23 on: February 16, 2009, 04:32:20 am »
Congrats, Marci!
All my best for continued improvement.

Sincerely,
Sue
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suboo73
Little sister to Bigsister!
9mm X 6mm X 5mm
Misdiagnosed 12+ years?
Diagnosed Sept. 2008/MRI 4/09/MRI 12/09/MRI 1/21/11
Continued W & W

satman

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Re: I'm almost afraid to say this...but...
« Reply #24 on: February 16, 2009, 07:10:29 am »
awesome marci,it gives me hope !
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kicked my little 8cm buddy to the curb-c ya !

GRACE1

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Re: I'm almost afraid to say this...but...
« Reply #25 on: February 16, 2009, 08:18:55 am »
Marci,

What wonderful news!!  Good way to start off my week. 

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

Pooter

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Re: I'm almost afraid to say this...but...
« Reply #26 on: February 16, 2009, 11:35:15 am »
Okay, so I'm late to the party.. But, my happiness over your good news is no greater than anyone else's.  I have facial twitches off and on (and have had them for a couple of months it seems).  I've noticed that I'll have them as a pre-cursor to more movement.  Progress is progress..  And I'm glad you're still having some!

Regards,
Brian
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Diagnosed 4/10/08 - 3cm Right AN
12hr retrosig 5/8/08 w/Drs Vrabec and Trask in Houston, Tx
Some facial paralysis post-op but most movement is back, some tinitus.  SSD on right.
Story documented here:  http://briansbrainbooger.blogspot.com/

"I must be having fun all wrong!"  - Roger Creager

Debbi

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Re: I'm almost afraid to say this...but...
« Reply #27 on: February 16, 2009, 01:12:14 pm »
Looks like I am a little late to the party, too - but wanted to jump in and say Whoopee!!!!  ;D ;D Keep us posted on progress!

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

jerseygirl

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Re: I'm almost afraid to say this...but...
« Reply #28 on: February 16, 2009, 01:26:06 pm »
This is great, Marci! This is what happens: you hit the plateau, get very frustrated with the progress and then... move in the right direction when you actually don't expect it. What a cause for celebration!

            Eve
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Right side AN (6x3x3 cm) removed in 1988 by Drs. Benjamin & Cohen at NYU (16 hrs); nerves involved III - XII.
Regrowth at the brainstem 2.5 cm removed by Dr.Shahinian in 4 hrs at SBI (hopefully, this time forever); nerves involved IV - X with VIII missing. No facial or swallowing issues.

wendysig

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Re: I'm almost afraid to say this...but...
« Reply #29 on: February 16, 2009, 04:36:18 pm »
YAY Marci!

I'm so glad to read your good news!  I hope you continue to see and feel improvement!

Best wishes,
Wendy
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1.3 cm at time of diagnosis -  April 9, 2008
2 cm at time of surgery
SSD right side translabyrinthine July 25, 2008
Mt. Sinai Hospital, New York, NY
Extremely grateful for the wonderful Dr. Choe & Dr. Chen
BAHA surgery 1/5/09
Doing great!
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