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Author Topic: Kaybo's Story  (Read 9984 times)

Kaybo

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Kaybo's Story
« on: May 23, 2012, 11:57:34 am »
I wasn't sure if I should put this up here (& a lot of you have seen it on FB anyway) but i have received many positive comments about it and I thought that it might be of some sort of encouragement to someone on here...this is a little talk that I gave at our (somewhat BIG - 700 people each at 2 different services) church on Mother's Day but it is part of my story with my AN and how my strong faith played a huge role in that.  It is not going to hurt my feelings if you don't watch it!!  LOL!  ;)

K   ;Dhttp://youtu.be/4TZvbdprrus
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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!

LakeErie

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Re: Kaybo's Story
« Reply #1 on: May 23, 2012, 12:43:23 pm »
It certainly belongs here, and congratulations on your presentations. The video is more than encouraging. Thanks for doing this.
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4.7 cm x 3.6 cm x 3.2 cm vestibular schwannoma
Simplified retrosigmoid @ Cleveland Clinic 10/06/2011
Rt SSD, numbness, vocal cord and swallowing problems
Vocal cord and swallowing normalized at 16 months. Numbness persists.
Regrowth 09/19/2016
GK 10/12/2016 Cleveland Clinic
facial weakness Jan 2017

JerseyGirl2

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Re: Kaybo's Story
« Reply #2 on: May 23, 2012, 12:44:50 pm »
Kay,

Thank you for sharing this with the forum. You are truly an inspiration for all of us here.

Catherine (JerseyGirl 2)
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Translab surgery and BAHA implant: House Ear Institute, Los Angeles, 1/2008
Drs. J. House, Schwartz, Wilkinson, and Stefan
BAHA Intenso, 6/2008
no facial, balance, or vision problems either before or after surgery ... just hearing loss
Monmouth County, NJ

KBL

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Re: Kaybo's Story
« Reply #3 on: May 23, 2012, 01:42:02 pm »
 ;) Thank you Kay!  I always love to hear people's testimony.  Thank you for sharing.  Prayer and the Lord is what has gotten me through also.  My tumor was also described as "huge".
Blessing, Karen
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5.6 cm. left side retrosigmoid surgery January 2010.  Dr. Villavicencio, Boulder, CO  Cyberknife April 2010  Left side  facial paresis started September 2010.  Gold weight implant Dec. 2010.  Total hearing loss on left side.  As of today, tumor still appox. 28x18x8 mm

Jim Scott

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Re: Kaybo's Story
« Reply #4 on: May 23, 2012, 02:48:03 pm »
Hi, Kay ~

Thank you for providing the link so that we could all be blessed by your testimony in church on Mother's Day.  Well done!

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.

Brewers7

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Re: Kaybo's Story
« Reply #5 on: May 23, 2012, 03:25:43 pm »
Kaybo,
Thank you for sharing this.  Once again, your wisdom astounds me.  Susan
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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

CHD63

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Re: Kaybo's Story
« Reply #6 on: May 23, 2012, 03:31:07 pm »
So glad you decided to post this here!  Even further inspiration to all who watch the video!

Love you,
Clarice
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Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

Tod

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Re: Kaybo's Story
« Reply #7 on: May 24, 2012, 05:02:31 am »
Very nicely done. You are indeed a VIP.

-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.

cindyj

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Re: Kaybo's Story
« Reply #8 on: May 24, 2012, 07:46:33 am »
Good job, Kay!  And, it was so nice to hear your voice...feel like I really know you now :D

Cindy
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rt side 1.5 cm - Translab on 11/07/08 Dr. Friedman & Dr. Schwartz of House Ear Institute,
feeling great!

"Life consists not in holding good cards, but in playing well those you do hold."  Josh Billings

pjb

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Re: Kaybo's Story
« Reply #9 on: May 24, 2012, 07:47:56 am »
Thank you for sharing that and I am sure it is going to help so many others that there is life after an AN and to keep the Faith.

Best Wishes,
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Diagnosed with a 1 cm. AN had Retrosigmoid
Approach surgery July of 2009, several problems after surgery.

lrobie

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Re: Kaybo's Story
« Reply #10 on: May 24, 2012, 10:29:27 am »
Kaybo,

Thanks for sharing.  It was very inspirational.

Lisa
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6/2009 7mm x 4mm  W&W
8/2011 9.5mm x 5mm
2/2012 UPMC Follow-up , slight growth
Surgery on 7/18/12 w/Drs. Friedman & Schwartz (mid-fossa)
www.caringbridge.org/visit/lisarobie

leapyrtwins

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Re: Kaybo's Story
« Reply #11 on: May 25, 2012, 12:00:05 pm »
Kay,

although I saw this on Facebook, I'm so glad you posted it here also.

It's important for people to know that - as we always say - there is life after an AN.

You are one of the most inspirational people I know.  This was a wonderful presentation and I think I can speak for everyone when I saw we are all so proud of you!  ;D

Best,

Jan
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Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

LizAN

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Re: Kaybo's Story
« Reply #12 on: May 25, 2012, 02:17:16 pm »
That was beautiful, Kay.

Liz
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8/20/2010 - 9mm AN on left side 
Fullness, tinnitus, mild hearing loss
2/20/2011 - 8mm
4/20/2012 - 12.4 mm
Moderate to severe hearing loss, LOUD tinnitus, deteriorating balance
Facial numbness and twitching, which subsided pre-surgery
Translab at House, 7/3/2012, Slattery and Schwartz

Soundy

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Re: Kaybo's Story
« Reply #13 on: May 27, 2012, 08:02:27 am »
Good morning...I am never early for anything but got to church 30 minutes early having herded the girls out the door   saying we should have left fifteen minutes ago.... they told me we were early and i argued with them and being the mom won that arguement... listen to old time gospel show and man said the time and it finally clicked that wewere way early....

That said , it gave me timeto tap into the churches wifi and watch you....you gave me a much needed lift... I have been running on empty for past week.... thank you for sharing this with us...

PS ....forgive typos....typing on nook is chalenging for me :-)
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3mm AN discovered Aug 2004
Translab July 2 ,2007
3.2cm x 2.75cm x 3.3cm @ time of surgery

dalern

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Re: Kaybo's Story
« Reply #14 on: May 27, 2012, 08:34:57 am »
You did an incredible job and it's so wonderful that you can share your story.  You are an inspiration to all of us! Congratulations!  You deserved that standing ovation!
Dale
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Dale Barnes, RN, MSN, CLNC
Tarzana, CA
1998 Sudden Onset Idiopathic Sensorineural  hearing loss diagnosed at House Ear Institute, Los Angeles
BAHA June 30, 2010 Dr. Jeffrey Harris UCSD San Diego
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