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Author Topic: Magic AN Scarf  (Read 3211 times)

EJTampa

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Magic AN Scarf
« on: February 25, 2009, 05:19:23 pm »
It's here!  Kim sent me the scarf and journal in record time!  Here is a pic from my cell phone, will do a better one another day.
 

 
Thanks so much Kim, and all of you who have kept this magic scarf moving!  I'll be sure to pass it along once it has worked it's magic for me. 
 
Oh, the dark spot you see on my forehead is because today is Ash Wednesday.  It's not a bruise :)
 
Ernie
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-1.3 X 0.8 cm AN in the right cerebellopontine angle extending into the internal auditory canal.
-Retrosigmoid Surgery with Dr. Bartels and Dr. Danner at Tampa General 3/5/2009.
-Had to cut hearing nerve to get "sticky" tumor, so SSD right side.

Jim Scott

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Re: Magic AN Scarf
« Reply #1 on: February 25, 2009, 05:24:43 pm »
Ernie ~

Congratulations on receiving the coveted Magic Scarf!  It looks good on you.   I used have to a necktie very similar to that!  :)

I trust your possession of the Magic Scarf will help ensure a good outcome for you.

Thanks for the photo.

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.

Jwh

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Re: Magic AN Scarf
« Reply #2 on: February 25, 2009, 07:10:01 pm »
NOW I FEEL LEFT OUT  :(  WHERE WAS THAT MAGIC SCARF WHEN I NEEDED IT????  JUST FINDING OUT ABOUT IT NOW ;)

JEN
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5/01  1.3 AN removed at NYU using Retrosig. Approach
2/07  Rediagnosed with Regrowth 8 mm (wait & watch mode)
1/09  1.4 AN removed at NYU using Translab (total tumor removal)

leapyrtwins

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Re: Magic AN Scarf
« Reply #3 on: February 25, 2009, 07:35:42 pm »
Congratulations, Ernie.  I believe you are the 2nd male to wear the magic scarf.

Don't feel bad Jen, lots of us never received the scarf - it didn't even exist when I had my surgery.

I recovered just fine without it though.

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

LADavid

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Re: Magic AN Scarf
« Reply #4 on: February 25, 2009, 08:19:31 pm »
Looks great, Ernie.  I think it was just about a year ago that the scarf started out on it's journey.  Does anyone remember the old children's book "Paddle to the Sea"? It's sort of like that.

And Jen, sorry it missed you.  I think it was in Canada when you had your surgery.

David
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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

sgerrard

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Re: Magic AN Scarf
« Reply #5 on: February 25, 2009, 09:57:17 pm »
Jen, we sent you a virtual magic scarf. Although it can't prevent everything from happening, you don't want to know what it would have been like without it.  ::)

Steve
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8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

Jwh

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Re: Magic AN Scarf
« Reply #6 on: February 26, 2009, 07:21:46 am »
Now I feel better! ;D  Glad it was with me via some mode - virtual  :) 

Seriously this forum rocks!!  Where else would you find this support, get your questions answered and get a traveling magic scarf?  We are very lucky people that this forum exsists.

Jennifer
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5/01  1.3 AN removed at NYU using Retrosig. Approach
2/07  Rediagnosed with Regrowth 8 mm (wait & watch mode)
1/09  1.4 AN removed at NYU using Translab (total tumor removal)

EJTampa

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Re: Magic AN Scarf
« Reply #7 on: February 26, 2009, 09:35:16 am »
I couldn't agree more Jennifer.  While nobody wants to be on this journey, this forum makes the pre-op period so much more tolerable, and quite often, enjoyable!  While the magic scarf and journal go a long way to lifting spirits, it's really the great people here that give up so much of their time to make sure people like me feel welcomed and more importantly, that we are not alone.
 
Ernie
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-1.3 X 0.8 cm AN in the right cerebellopontine angle extending into the internal auditory canal.
-Retrosigmoid Surgery with Dr. Bartels and Dr. Danner at Tampa General 3/5/2009.
-Had to cut hearing nerve to get "sticky" tumor, so SSD right side.

Syl

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Re: Magic AN Scarf
« Reply #8 on: February 26, 2009, 11:36:35 am »
Ernie:

It looks good on you. A matching hat knitted by Steve would complement it nicely.

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.

lori67

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Re: Magic AN Scarf
« Reply #9 on: February 26, 2009, 12:03:08 pm »
Ernie,

The ascot look!  Very European!   ;)

And I think you get extra credit from The Big Guy for the ashes and the scarf together! 

Lori
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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.

cindyj

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Re: Magic AN Scarf
« Reply #10 on: February 26, 2009, 02:56:03 pm »
Marvelous look, Ernie!  So glad the Scarf continues its journey - it sure did the trick for me!  Would it be cool to have it and the journal somehow go to the Symposium in Chicago this summer so others could see it...if there's no one having surgery that weekend :)  It really is a very special thing!  Thanks, again, Debbi, for starting it!

Thanks for sharing the pic, Ernie,

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

NL

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Re: Magic AN Scarf
« Reply #11 on: February 26, 2009, 06:43:53 pm »
Great pic, Ernie! And yet another way for men to wear the Magic Scarf! I'm very impressed by the looks the guys have come up with.

Syl - Great idea...complimentary Magic Hats by Steve.  ;D

And Jen, I had a virtual one, too. :) They may not photograph as well, but the sentiments are there just the same.

Nancy

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1.6 cm left AN diagnosed Oct. '07
1.9 cm on 2nd MRI, May '08
Retrosigmoid surgery at House Clinic/St. Vincent's on 8/6/08
(no post-op dizziness, nausea, facial or balance issues)
Thankful for a fantastic team of doctors - Dr. Rick Friedman, Dr. Marc Schwartz, & Dr. Michael Stefan

leapyrtwins

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Re: Magic AN Scarf
« Reply #12 on: February 26, 2009, 10:39:40 pm »
Quote from: cindyj on February 26, 2009, 02:56:03 pm
So glad the Scarf continues its journey - it sure did the trick for me!  Would it be cool to have it and the journal somehow go to the Symposium in Chicago this summer so others could see it...if there's no one having surgery that weekend :) 

Cindy -

this is a GREAT idea!

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

EJTampa

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Re: Magic AN Scarf
« Reply #13 on: February 26, 2009, 11:30:47 pm »
We'll have to see how many more people we can get the scarf and journal to between now and the symposium!  I'll be sure and recover quickly after my surgery so I can pass it along to the next lucky recipient!
 
Ernie
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-1.3 X 0.8 cm AN in the right cerebellopontine angle extending into the internal auditory canal.
-Retrosigmoid Surgery with Dr. Bartels and Dr. Danner at Tampa General 3/5/2009.
-Had to cut hearing nerve to get "sticky" tumor, so SSD right side.

wendysig

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Re: Magic AN Scarf
« Reply #14 on: February 27, 2009, 10:33:45 pm »
Ernie,

Proof once again that a man can wear the Magic Scarf with panasch! 

Thanks to Debbi for starting this wonderful tradition!  It seems this scarf has real magic infused by the strength of  each recipient and passed on.  I wish you much luck and a great surgical outcome.  I look forward to seeing post-surgical pics of you sporting the Magic Scarf!

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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