Author Topic: Magic Scarf - A Photo History  (Read 17742 times)

Sobes

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Re: Magic Scarf - A Photo History
« Reply #15 on: November 18, 2009, 12:56:07 pm »
Thanks for sharing these pictures and sentiments! Made me both smile and cry!!  :) Such compassion, understanding, guidance and heartfelt words are a rare find. I am almost convinced these things do not exist in the "real" world, but only here in our little AN world!! What a special group. There are no words to describe the connection of friendship here! Wow...makes me very proud to be a part of it!

Bren~
Small AN, left side, Oct. 22 2009
Surgery Dec. 22 @ UW Madison (wonderful doctors)
SSD (left side)

ppearl214

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Re: Magic Scarf - A Photo History
« Reply #16 on: November 18, 2009, 01:03:54 pm »
once the journal was in Boston in April (and as NancyMc is noting), images were made of the last known (to me) pages of the journal, which can be found on my frappr:

http://www.frappr.com/?a=viewphoto&id=798498&pid=10969438&myphotos=1

You can see 3 pages of April entries (esp for those of us at the April Apple Dumplin' gang brunch in MA) that were done... after that, I thought the scarf/journal went to allegro/Laura but not 100% sure.... anyone? thoughts? Bueller?

Phyl

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

cindyj

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Re: Magic Scarf - A Photo History
« Reply #17 on: November 18, 2009, 04:11:49 pm »
Should we just try to start a new one in case the original is never found?  Maybe we could print off the pages we do have (from Ernie's thread and Phyl's frappr) and glue them in the new one and just start it again?  It was such a special part of the Scarf's journey!  Of course, the Scarf is still magical without the journal, but it's just so great to see everyone's input and have a history of where it travels...

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

EJTampa

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Re: Magic Scarf - A Photo History
« Reply #18 on: November 18, 2009, 04:27:12 pm »
Hey Cindy,
 
That sounds like a great idea!  If the person with the scarf has a printer, maybe they can start it and send both along to the next person?  If not, I'm sure I could get a new journal and send it off to someone with the older entries pasted in.  Let me know!
 
Ernie
-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.

NancyMc

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Re: Magic Scarf - A Photo History
« Reply #19 on: November 19, 2009, 11:54:46 am »
Not sure if the question is where I sent the journal, but as noted in my post, I mailed it to lauralynn in Phoenix after the brunch.  She was supposed to have mailed it to Laura/allegro17?67?   Anyway, you know whom I mean.
I definitely support the idea that a new one should be started where the old one left off.
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

Tamster

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Re: Magic Scarf - A Photo History
« Reply #20 on: November 19, 2009, 02:23:50 pm »
I have been trying to track down the old journal, but now that so many of you have posted your photos / entries from the journal, I will be happy to recreate the journal from those entries. Mike is still recovering and I'm taking time off from working with my students, so I should have time to do it before my surgery December 8th. It will be a good project for me. I've already got a list of begats.  So, if no one objects, I volunteer to put it together again and may PM some of you if there seem to be broken links in the journal/scarf genealogy.  I'll try to get as many of the old entries as possible.

Tammy
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

Jim Scott

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Re: Magic Scarf - A Photo History
« Reply #21 on: November 19, 2009, 02:41:29 pm »
I have been trying to track down the old journal, but now that so many of you have posted your photos / entries from the journal, I will be happy to recreate the journal from those entries. Mike is still recovering and I'm taking time off from working with my students, so I should have time to do it before my surgery December 8th. It will be a good project for me. I've already got a list of begats.  So, if no one objects, I volunteer to put it together again and may PM some of you if there seem to be broken links in the journal/scarf genealogy.  I'll try to get as many of the old entries as possible.

Thanks Tammy!  I'm sure no one will object.  In fact, your efforts would be much appreciated.  :)

Jim
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.

NancyMc

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Re: Magic Scarf - A Photo History
« Reply #22 on: November 19, 2009, 02:45:58 pm »
I've sent mine off via email since it was electronic.  Did you receive it, Tammy?
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

Tamster

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Re: Magic Scarf - A Photo History
« Reply #23 on: November 19, 2009, 05:22:26 pm »
I've sent mine off via email since it was electronic.  Did you receive it, Tammy?

Yes I received it. Thank you, Nancy. 

Tam
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

Dog Lover

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Re: Magic Scarf - A Photo History
« Reply #24 on: November 19, 2009, 09:55:31 pm »
For what it's worth I sent the scarf to cheri. Sue had sent it to me. It because her surgery was so close to mine I actually didn't get it until about a week after my surgery. So..  No pics of me with it. At that point the last thing on my mind was pictures. I still keep in touch with sue. She recently had. Baha surgery.

Cathy

Sent from my iPod.
Cathy
9mm x 3mm Left Side AN
Mid Fossa Aug. 21, 2008
Dr. Gantz / Dr. Woodson
Univ. of Iowa Hospitals and Clinics
No facial issues, hearing saved, I keep active and feel back to normal.

Debbi

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Re: Magic Scarf - A Photo History
« Reply #25 on: November 20, 2009, 07:47:29 am »
Tammy-

You are great - thanks for volunteering to re-start the journal!  Not sure who started the journal initially (Wendysig?), but always thought it was a wonderful idea. 

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

another NY postie

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Re: Magic Scarf - A Photo History
« Reply #26 on: November 20, 2009, 01:11:07 pm »
Tammy,
Thanks.  I know I received the scarf in Sept from Ken and then it went from me, to Amy, then Dennis and Mike now has it!  Lot of traveling this fall.  So I think the best would be for all of us who just had the scarf to look at the pages that were in the journal and model our page after that and send it off to you.  Then hopefully you can start with a complete journal!  At least that is what I will do ( in case nobody agrees with me ;D)  Thanks for taking this on!
Cheryl
5 mm lateral IAC (impacted?) diagnosed 6-09-09
middle fosa 9/23 HEI - Brackmann/Schwartz
all tumor gone, facial perfect, no ringing
SSD on right side - Rockin' and Rollin'

loose screws (tightened)

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Re: Magic Scarf - A Photo History
« Reply #27 on: December 01, 2009, 01:45:56 pm »
Hi past magic scarf recipients. I'm just catching up to this whirlwind. I have the scarf now and will be happily handing it back to another female. I don't care how masculine you try to make it, it's leopard print and all the testosterone in the world isn't gonna change it.

I have to wonder what Julie and Diane are thinking in the last picture. They are both visiting LA with a grown man who just had, or is about to have, a strange tumor in their head removed, and is presently in the garden exchanging a magic scarf with another man. Huh? How did this happen?  

GREAT REPLY STEVE!

I agree that starting a new journal is a great idea. And having Tammy voulenteer to start a new one and include past recipients is not going to be easy. We just have to make sure that who ever had it between Laura/allegro17?67 and Ken doesn't get left out if there was anyone. Then there's Cheryl, Amy, Dennis and me. If Tammy's starting a new journal and bringing it to LA. then I could ask Amy if she would be interested in sighning it while it is here along with myself.

I'll PM Amy.

What a group.

Mike
47 Y/O. diagnosed AN After MRI. 4X5X7mm within the right auditory canal. Slight hearing loss, ringing in ear, vertigo. Middle fossa with House Ear Clinics Dr Brackmann and Dr. Schwartz on 11-16-09. 6 new tightened titanium screws but no more hearing.
http://mikessurgery.blogspot.com/

Tamster

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Re: Magic Scarf - A Photo History
« Reply #28 on: December 01, 2009, 02:06:39 pm »
Hi all,
I managed to track down the old journal. I am hoping I will get it in time to update it and bring it with me to House this weekend. EEEEEEK! This weekend! Oh, don't mind me, that's been happening a lot this week.
It wasn't in the mailbox today--just checked, so unless I get it soon, I may have to do the updates post-surgery, which of course will just take some time. But if everyone will bear with me, I'll be glad to do it as my recovery permits, and then send it on its way.

Tam

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

loose screws (tightened)

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Re: Magic Scarf - A Photo History
« Reply #29 on: December 01, 2009, 03:16:53 pm »
Great job Tammy. You did it so fast. I sure hope you get to bring it to LA.

Mike
47 Y/O. diagnosed AN After MRI. 4X5X7mm within the right auditory canal. Slight hearing loss, ringing in ear, vertigo. Middle fossa with House Ear Clinics Dr Brackmann and Dr. Schwartz on 11-16-09. 6 new tightened titanium screws but no more hearing.
http://mikessurgery.blogspot.com/