Author Topic: Phyl, coming to you live from your tv news.......  (Read 7995 times)

ppearl214

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Phyl, coming to you live from your tv news.......
« on: November 10, 2010, 05:37:01 am »
Hi all

Ok, this is NOT to bring praise and stuff..... but only as an FYI in case any of you see this and say "HEY! I KNOW her!" while watching your tv news.........

I've been tapped to do a human-interest health update story re: my AN and CK journey.  This is being taped tomorrow at Beth Israel in Boston where I had my CK treatment for my AN almost 5 years ago. My radiation-onc, Dr Anand Mahadevan and I will be interviewed for this story, which will then be fed out to *gulp* over 200 stations nationwide for potential pick up of the story (they can capture the story if they want to air it), including the networks here (ie: ABC, NBC, CBS, etc).   The ANA is already aware of this and a part of my interview will cover my pre-treatment research, which includes how I came to these forums seeking out treatment options..... so, the forums are going to be publicized as well.

So, this is to give you a heads-up, in case you are drinking your morning coffee and see my big nose flash across your tv screens (I feel bad for those that have big manly-man big screen tv's with my nose taking up most of the space).  Yes, it will be me.  Unsure of airing date but once they edit the piece and feed it out, don't know where it may air.  It could possibly be picked up in areas that offer CK (ie: N. CA, OKC, Boston, Atlanta, etc) so just letting you know.  

The goal of me doing this is the hope that it brings info to those possibly seeking out options for treatment of AN's and nothing more.  Seems I'm being tapped for these things (ie: see my thread about guest-speaker spot in Feb in San Fran) and as I told the ANA, if this helps to bring a face to AN's, then I'm all for it.  AN's need to be brought to the forefront and public awareness to help our cause works for me, thus, my reason for doing this.

... and yes, I even "grew new blonde hair" for the occassion, granted, it cost me $155 to grow the blonde hairs.

I do this for you all.... and for those down the road that also have this diagnosis....... so, hoping this helps the cause.

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

JLR

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Re: Phyl, coming to you live from your tv news.......
« Reply #1 on: November 10, 2010, 05:58:32 am »
Phyl that's awesome!! I hope I can view this in NY. Congrats! Joan

lori67

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Re: Phyl, coming to you live from your tv news.......
« Reply #2 on: November 10, 2010, 07:05:04 am »
Another movie star in our midst!!!   ;D

I should have gotten your autograph last year - before you were famous!

Congratulations and I know it will be awesome!  I hope I get to see it from here!

Lori
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.

Kaybo

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Re: Phyl, coming to you live from your tv news.......
« Reply #3 on: November 10, 2010, 07:23:41 am »
ohhhh...how exciting!!  let us know where & when we can see it - hope it is on the web as i do't watch much news/tv

love ya!
k   ;D
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!

CHD63

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Re: Phyl, coming to you live from your tv news.......
« Reply #4 on: November 10, 2010, 08:18:20 am »
Ooooooh, I love rubbing elbows with the rich and famous!   :o

Like Kay, I hope it is on the web as that is where I get most of my news.  I can only take the noise of TV for a limited amount of time.

Smile pretty and if you know beforehand when it will be airing, we'll set the DVR to record it.

Thanks again for the huge contributions you continue to make in support of acoustic neuroma patients!

Clarice
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

Lizard

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Re: Phyl, coming to you live from your tv news.......
« Reply #5 on: November 10, 2010, 08:52:36 am »
Go Phyl !!!!!!!  Please post the story if you can can't wait to see your beautiful blonde locks  ;D
Break a leg!

Liz
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: Phyl, coming to you live from your tv news.......
« Reply #6 on: November 10, 2010, 02:52:11 pm »
Phyl ~

Thanks for the heads-up on your upcoming AN-related TV interview.  I admire your willingness to put yourself out there to further awareness of acoustic neuroma and the ANA, (especially, the discussion forums).  I'm far less photogenic than you, Phyl (I had a face for radio) so I'm happy to see you and those who can do these kinds of highly public presentations well, make the effort for AN awareness.   Kudos to you (and the doctor)!

I second Liz's suggestion that you try to post the video, photos, transcript or a link once the interview has been completed.  We're all anxious to see it (and your newly-grown blond locks).  

Jim
« Last Edit: November 10, 2010, 03:49:07 pm by Jim Scott »
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.

cindyj

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Re: Phyl, coming to you live from your tv news.......
« Reply #7 on: November 10, 2010, 03:16:27 pm »
Well, alright!  Sure hope I catch it here in Atl!  If not, hope we can see it via the web somehow!  Very cool!

And, when might you be heading down here?  Holidays, maybe?  Make sure you let me know :)

Cindy
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

Debbi

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Re: Phyl, coming to you live from your tv news.......
« Reply #8 on: November 10, 2010, 03:31:21 pm »
You are a rock star, Phyl.  Of course, some of us knew that already!   ;)

Debbi
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

msmaggie

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Re: Phyl, coming to you live from your tv news.......
« Reply #9 on: November 10, 2010, 05:23:33 pm »
Rock on, Phyl!  We will all bask in your reflected glory...and beam right back at you! :D :D

Priscilla
Diagnosed  left AN 8/07/08, 1.9 CM
Surgery 12/10/08 at Methodist Hospital w/Vrabec and Trask for what turned out to be a cpa meningioma.

texsooner

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Re: Phyl, coming to you live from your tv news.......
« Reply #10 on: November 10, 2010, 06:40:17 pm »
As someone has been known to say.....You rawk Phyl....can't wait to see it.

Patrick
3.5cm left side AN; 11 hour retrosigmoid surgery 8/11/08 @ Memorial Hermann, Houston - Texas Medical Center with Drs. Chang and Vollmer; home on 8/13/08;
SSD(w/tinnitus); dry eye; Happy to be here and feeling good.

ppearl214

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Re: Phyl, coming to you live from your tv news.......
« Reply #11 on: November 11, 2010, 06:29:43 am »
Hi all

There is a website for the group doing the taping.... as soon as I know it's out there, will advise.

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

CHD63

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Re: Phyl, coming to you live from your tv news.......
« Reply #12 on: November 11, 2010, 06:46:06 am »
Phyl .....

Will keep checking this thread for the website info ......  Did you finish the taping yesterday or is it a several day thing?  Even though you have done this before, it has to be exhausting to "be on one's best" for such an occasion.

Clarice
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

krbonner

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Re: Phyl, coming to you live from your tv news.......
« Reply #13 on: November 11, 2010, 09:08:14 am »
Why am I so very not surprised that you're being asked to do this??   :D

You're a great face to put to an AN awareness program and I'm so thrilled that you're doing this!  Like everyone else, I anxiously await updates of where we can see this awesome story!

(((huggles)))

Katie
diagnosed June 2005
2.3cmx1.6cmx1.4cm left AN
translab Sept 13, 2006; Drs. McKenna and Barker in MA (MEEI/MGH)

Syl

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Re: Phyl, coming to you live from your tv news.......
« Reply #14 on: November 11, 2010, 11:09:01 am »
Phyl:

Thanks for all that you do to spread AN awareness. I'm looking forward to seeing this on tv.

Syl
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.