Author Topic: Phyl, coming to you live from your tv news.......  (Read 7956 times)

Brendalu

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Re: Phyl, coming to you live from your tv news.......
« Reply #15 on: November 11, 2010, 11:19:46 am »
I'll second Patrick...YOU RAWK!

Huggles,
Brenda
Brenda Oberholtzer
AN surgery 7/28/05
Peyman Pakzaban, NS
Chester Strunk, ENT

Captain Deb

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Re: Phyl, coming to you live from your tv news.......
« Reply #16 on: November 11, 2010, 11:28:19 am »
Hopefully this can lead to the beginning of the end of the mindset that the best remedy for small ANs is  the brutal surgery that has left so many of us with the life-altering side-effects of chronic head and neck pain.  Will we be able to view it on Youtube?

You go you Poster Girl!

hugs and big sloppy kisses on your forehead!

Capt Deb
"You only have two choices, having fun or freaking out"-Jimmy Buffett
50-ish with a 1x.7x.8cm.AN
Mid-fossa HEI, Jan 03 Friedman & Hitselberger
Chronic post-op headaches
Captain & Designated Driver of the PBW

free2be

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Re: Phyl, coming to you live from your tv news.......
« Reply #17 on: November 11, 2010, 01:03:19 pm »
Phyl,

Be sure to give us an internet link to a channel that carries it, in case our local station doesn't. Maybe you'll make national news and get an offer for a book or movie deal! You can dream, can't you?

Connie
Diagnosed Nov. 2008 Right AN 7 mm x 9 mm
Incremental MRIs enhancing mass
June 2010 1.4 cm x 0.9 cm extension into the CP angle
Pre-CK Stanford measurements 1.6 X 1.1 cm
9/29/10 - 10/1/10 CK completed with Dr Steven Chang and Soltys, Stanford.
6-month thru three year (8/13) follow ups MRI: stable

ppearl214

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Re: Phyl, coming to you live from your tv news.......
« Reply #18 on: November 11, 2010, 07:30:45 pm »
You all are too much! Truly!  :-*  :-*  :-*

Quick lowdown..... did the segment today.  Probably one of the most profound... and surreal moments ever.  I had NO clue we were doing this inside the CK center where I was treated.... tears..... it just hit me.... Almost 5 yrs ago, I walked through those doors in the hopes that my treatment choice would do the trick... and here I was, almost 5 yrs later, walking through those same doors knowing (in my case) that indeed, it did the trick.  Then, to really throw me for a loop, they had me demonstrate the begnnings of a treatment! Had me lay on the treatment table while the tech was demonstrating what it was to put on a mask with the CK robot next to me.  Needless to say, it was "Groundhog Day" all over.  Had no clue, got through it and have to say.... didn't think I'd react with the tears the way that I did. Everyone scrambling for tissues for me.... they didn't realize it would impact me in such a way... and I have to say, not in a negative way... truly :)  More happy tears knowing that this machine, in my AN journey, paid off and worked.  Very surreal, indeed.

Anyway, they did the 1-1 interview with Dr M... they brought us into exam room together and showed what a follow up appt would be... then interviewed me.  Of course, I noted the ANA and the forums as part of my "research" process.  Heck, they even had me doing some of my knitting...... with pics of me and da bloke surrounding me.  Took 2-1/2 hrs total for all of the process to be done... and it has to be edited down to 1:57mins.  Go figure, eh? :)

So, they have to go through the edit process, do "scripts" for what the newscasters will read, have the hospital PR and CK PR and me do a final check that it's good to go... and then.... well, it's not 200 stations that it's being fed.... but 300!!!!!!!!  :o  :o  :o

Spoke to the ANA office after, gave them the lowdown and will advise airing dates.    Based on all inputs together from all communications (ie: PR companies, producer, etc), there is a good  chance this will be picked up by many stations.

300 tv stations?!?!  *faints in disbelief!*

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 #19 on: November 11, 2010, 08:40:52 pm »
Whew!  What an emotional wringer!  In the name of all of us, thank you, Phyl, for all you do to raise awareness of acoustic neuroma treatments in such a gracious and heart-felt way.

Can hardly wait to say "I know her!!!"   8)

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

jerseygirl

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Re: Phyl, coming to you live from your tv news.......
« Reply #20 on: November 11, 2010, 09:06:07 pm »
Can't wait! I was always very interested in CK - here is my chance.

           Eve
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.

leapyrtwins

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Re: Phyl, coming to you live from your tv news.......
« Reply #21 on: November 12, 2010, 08:03:07 am »
Damn.  I'm away from the Forum for a few days and I miss something like this.

Congrats, Phyl.

Can I have your autograph?   ;)

Jan
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

ppearl214

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Re: Phyl, coming to you live from your tv news.......
« Reply #22 on: November 13, 2010, 07:13:14 am »
autographs? :)  funny!

Waiting on word that the final edits/scripts/approvals done, then will let you all know when it's going out.  Should be on their website as well. Will keep you updated.  Another face/voice (much like Kris in LA) for AN's...... let's hope it helps our cause! :)

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

MLB57

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Re: Phyl, coming to you live from your tv news.......
« Reply #23 on: November 14, 2010, 11:04:11 am »
:D  Phyl,

Eagerly awaiting word of your debut!! Beyond your 15 minutes of fame you will always be a Super Star to all of us here!!  Who knew as a result of my AN I'd know a real live celebrity!!!  :o

Best always,

Mary (AKA/Grammy  Mary)  ;D
1 cm rt AN (retrosigmoid Jan 2001 UMASSMed Ctr/Worc, MA)
Residual left--continued growing--finished 30 FSR w/Dr Loeffler (Mass Gen/Boston MA) on Oct 22 2007... --April 2010--tumor shrank to 8mm and is a dark spot!!  Latest Update: April May 2017 scan shows no change!--Next MRI 2020!!  Life is good!!

ppearl214

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Re: Phyl, coming to you live from your tv news.......
« Reply #24 on: November 15, 2010, 05:28:14 am »
Who knew as a result of my AN I'd know a real live celebrity!!!  :o

Not quite, m'dear! My military chief emailed me on Friday to see how it felt to be a celeb. Responded back that if I had the paycheck of Anjelina Jolie, then I could respond to his question more appropriately!  :D

Waiting to hear when the edits are done.... will keep you all updated.

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

elliemae

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Re: Phyl, coming to you live from your tv news.......
« Reply #25 on: November 17, 2010, 02:24:34 pm »
Hey, Phyl!
I go on vacation, and you end up in the news!  Well, I can't wait to see the bit.  You are one of, if not THE, best advocate for us ANers.

Best of luck with your debut.  What will you wear for the red carpet?   ;D

e

Sue

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Re: Phyl, coming to you live from your tv news.......
« Reply #26 on: November 18, 2010, 10:30:24 pm »
Oh Phyl, this is so freakin' awesome.  The airing probably won't make it out west, but then, maybe it will.  Maybe you should be on Dr. Oz's show!  Doesn't look like we are going to make it on Ophrah's show...so maybe Dr. Oz would be better anyway. 

We're so proud.

Sue in Vancouver, WA
Sue in Vancouver, USA
 2 cm Left side
Diagnosed 3/13/06 GK 4-18-06
Gamma Knife Center of Oregon
My Blog, where you can read my story.


http://suecollins-blog.blogspot.com/2010/02/hello.html


The only good tumor be a dead tumor. Which it's becoming. Necrosis!
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