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Author Topic: Magic Scarf - A Photo History  (Read 16934 times)

Debbi

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Re: Magic Scarf - A Photo History
« Reply #30 on: December 02, 2009, 06:18:32 pm »
Tammy - I can't believe you found it!!  I hope it shows up soon - if nothing else, it will keep you occupied (and distracted) as you await your surgery date next week! 

I'll be thinking of you next week, m'dear.

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

Kathy M

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Re: Magic Scarf - A Photo History
« Reply #31 on: December 03, 2009, 06:13:29 pm »
Hi Guys!

Sorry to chime in late here, but sounds like you've got a great plan to recreate something what was such a wonderful idea and source of comfort.  My surgery was 1/13/09 and I received the journal and scarf on the 13th (my kids brought it to me in the hospital).  Ken sent it to me and I loved his pictures modeling various ways to wear the magic scarf.  Perked me up in the hospital, I'll tell ya.  My daughter took a picture of me with it and we printed it out and placed it in the journal, but it was on her phone and we've since lost it when she changed phones so I've got nothing to upload here.  Sorry!  I sent both to Kim Z (I think that was her name) in New York.

Anyway, I love the journey of the scarf, the idea to keep it alive, and the closeness of this special group of folks. 

Kathy
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AN diagnosed 11/14/08, 3+cm, Retrosigmoid 1/13/09, Univ. Hosp., Cincinnati, Drs. Tew and Pensak
no facial nerve or eye issues!
3 more surgeries related to staph infections & osteomylitis over next 13 months.  New diagnosis of breast cancer.  Treatment completed 08/27/10.  Moving on!!!

Kate B

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Re: Magic Scarf - A Photo History
« Reply #32 on: December 03, 2009, 08:28:05 pm »
We are so connected:-)  I love the magic scarf and journal idea.  Glad the original was found!
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Kate
Middle Fossa Surgery
@ House Ear Institute with
Dr. Brackmann, Dr. Hitselberger
November 2001
1.5 right sided AN

Please visit http://anworld.com/

DR

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Re: Magic Scarf - A Photo History
« Reply #33 on: December 06, 2009, 06:46:50 am »
How should I go about adding my two cents to the Magic Scarf journal?  I really love how this connects many of us and am proud to be part of the history.
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AN right side 12mm x 9mm x 9mm
Middle fossa surgery 11/4/09 at House (Dr. Brackmann/Dr. Schwartz)
Tumor removed, no facial issues, hearing intact!
http://denvstumor.blogspot.com/

"The greatest trick the devil ever pulled was convincing the world he did not exist."

Tamster

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Re: Magic Scarf - A Photo History
« Reply #34 on: December 06, 2009, 08:28:01 am »
So glad you asked Dennis,
I got in touch with LauraLynn a couple weeks ago. She told me she has the journal and would send it to me right away. Since I thought I might have it in time to leave for Los Angeles, i stopped re-creating the journal. But as of yesterday, I still have not received it. So when I'm recovered well enough to work on it, I think I'll go back to my plan to recreate it.
I can print out the photos that so many of you have put on this forum and your blogs, but any personal comments or additions you'd like for your page, or if you'd like a specific photo just let me know and I'll be sure to include those. I'm happy to personalize your page how you'd like. I have the chronology and have printed out many of the entries, so I have a start on it.  As soon as my recovery permits,  I'll do my best to recreate it and send it on its journey again.
THE JOURNAL WILL RISE AGAIN!
Tomorrow Mike will hand off the magic scarf to me and if Jay wants it for his surgery Wednesday, I'll be happy to pass it off to him (via my hubby.)

Tam
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6mm AN left side, diagnosed Sept 22, 2009
Middle Fossa  December 8th 2009,  Drs. Brackmann and Schwartz.
Facial nerve preserved, tumor out, SSD. tinnitus.

Life isn't t about waiting for the storm to pass. It's about learning how to dance in the rain.

http://www.caringbridge.org/visit/Tamst

NancyMc

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Re: Magic Scarf - A Photo History
« Reply #35 on: December 06, 2009, 09:04:52 am »
Tam,
I mailed the journal to Lauralynn, so you DO have everything up to that hand-off preserved electronically.  I hope Lauralynn is doing well.  She had one of the longer recoveries I'm aware of from the forum.
Good luck with the journal project and of course that other little thing.
Nancy
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Watch and Wait since 9/19/01
Increased from 1.1 x 1.9 to 1.9 x 1.9 cm as of 10/27/08
Right SSD, tinnitus, compensating balance
Dr. McKenna at Mass Eye and Ear and Dr. Barker at MGH
Translab April 8, 9 hours, 18 mm Tumor all gone SSD some facial weakness

NL

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Re: Magic Scarf - A Photo History
« Reply #36 on: December 08, 2009, 11:16:40 pm »
Tammy met with the LA ANers yesterday, and we witnessed the passing of the Magic Scarf (in front of the House Clinic "ear") from postie Mike to "pre-postie" Tammy:


Tammy receives the scarf (and all its good vibes) from Mike, 12-7-09

Jay (having surgery the day after Tammy with the same team) had to leave for his appointment with Dr. Brackmann before we all had a chance to meet together, so he is absent in the pic, but near in thought!  :)


Lainie, Mike, Tammy, Nancy & David, 12-7-09

And the best news of all is that Tammy's now a postie! Here's the latest from her husband Jim on her blog:
http://www.caringbridge.org/visit/tamster/journal

Congrats, Tammy!

(And Jay, we'll be sending lots of good vibes out to you in the morning!)

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

Pooter

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Re: Magic Scarf - A Photo History
« Reply #37 on: December 08, 2009, 11:25:05 pm »
Thanks for the update, Nancy.  Jim must have JUST posted that update because I checked the blog earlier and nothing was there.  I then posted to Tammy's thread about surgery because there was no update there either.  I'm pleased to know she is out and doing well.

Great pics, also!

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

leapyrtwins

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Re: Magic Scarf - A Photo History
« Reply #38 on: December 09, 2009, 07:07:28 am »
Once again, a beautiful picture of the LA Gang - not to mention, Mike and Tammy  ;D

The giant ear is very interesting.

Just read about Tammy's progress; sounds like she's doing great.

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

NancyMc

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Re: Magic Scarf - A Photo History
« Reply #39 on: December 09, 2009, 08:38:29 am »
Beautiful photo.  Love the ear!
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Watch and Wait since 9/19/01
Increased from 1.1 x 1.9 to 1.9 x 1.9 cm as of 10/27/08
Right SSD, tinnitus, compensating balance
Dr. McKenna at Mass Eye and Ear and Dr. Barker at MGH
Translab April 8, 9 hours, 18 mm Tumor all gone SSD some facial weakness

cindyj

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Re: Magic Scarf - A Photo History
« Reply #40 on: December 09, 2009, 08:57:54 am »
Great photos, Nancy!  Way to go, Tammy! 

Yes, the ear is very impressive...Mom took a pic of it when we were there, but didn't turn out as nice as this one.  Think you could push buttons and it would tell about the parts of the ear...I was a bit distracted and didn't really explore it fully :)

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

JerseyGirl2

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Re: Magic Scarf - A Photo History
« Reply #41 on: December 09, 2009, 10:13:36 am »
Wonderful pictures! And it's great to see that the L.A. Welcoming Committee is still going strong -- the comfort you all provide to the incoming patients is just amazing.

I definitely remember the giant ear from my two weeks at House. Have to say that I did not explore it very thoroughly -- I had enough issues with my very own ear, but it was impressive.

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

Captain Deb

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Re: Magic Scarf - A Photo History
« Reply #42 on: December 12, 2009, 08:43:23 am »
Hey! The magic scarf made the ANA Notes newsletter!  Kimberley's story and a photo are featured.

COOL EAR!! That musta been a really big person that they dissected it from (like Body Worlds) EEEWWWW!!!!!

Capt Deb
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"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
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