Author Topic: Magic Scarf - A Photo History  (Read 16933 times)

another NY postie

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Magic Scarf - A Photo History
« on: October 11, 2009, 08:28:27 am »
I wanted to start a photo essay for the magic scarf.  Anyone who was lucky enough to have the magic scarf - anyone who knows the history - any stories...post them here along with photos..even if you have the virtual magic scarf...let's see if we can map out its journey.

Date of Surgery:  September 23, 2009
Location:  House Ear Institute/St Vincents - Dr. Brackmann
Type:  Middle Fosa

For me the magic scarf made me feel connected to the AN community - it made me feel strong and safe.  I felt very lucky to have it with me.  I actually started wearing it about a week before surgery as I had caught a cold and was fearful of cancellation of surgery so I tried to invoke its magic early!  (I was hoping I was not crossing magic scarf protocol lines but I desperately needed some magic early ;D)

I wore it on my pre-op, after ICU, whenever I could.  I told EVERYONE about it.  I am sure people wondered who was that nut in LA with the half-shaved head and that leopard scarf!  

It is truly the traveling MAGIC scarf (Kind of like the Sisterhood of the Traveling Pants) - may it bring hope, courage and MAGIC to many more ANers!






« Last Edit: October 17, 2009, 11:16:20 am by another NY postie »
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'

Debbi

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Re: Magic Scarf - A Photo History
« Reply #1 on: October 12, 2009, 09:09:41 am »
What a great idea!  

The Magic Scarf started it's journey with me at NYU.  One of my friends who came to visit me in the hospital gave it to me to cheer me up - after all, who accessorizing is important, even in the hosptial!  This was taken on Day Two after surgery with my droopy face:



A couple of months later, I met Wendysig for the first time (after many phone conversations).  It was a week before her surgery and I decided, kind of on the spur of the moment, to give the scarf to her to bring her luck.  And, so the Scarf's journey began...

Debbi

Fixed the photo Deb.. all set!   :-*
« Last Edit: October 12, 2009, 09:11:13 am by ppearl214 »
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 #2 on: October 12, 2009, 03:53:09 pm »
Debbi,
I am so happy to meet you and thrilled that you are the first one to post!  You did a great thing...it is a AN legacy!:)  Look good in the scarf!  :)

PS  Sorry my pictures are so enormous, don't know how to make them smaller!
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'

cindyj

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Re: Magic Scarf - A Photo History
« Reply #3 on: October 15, 2009, 12:14:44 pm »
Great idea!  I'll post my post-op pic with the scarf, but here's a thread with the "passing of the scarf" from Mathilde (of Holland) to me out in LA.  (I don't know how to pull just the pic to here).  Mathilde received the scarf from Cheri (cwood) right before I got it.  I had the privilege of meeting Mathilde while she was still in LA recovering thanks to Nancy (NL) who took my husband, mom and me on a marvelous tour that ended up at the Pacific Ocean in time for the sunset and the passing of the scarf. The journal (which is currently MIA) is in the photo also.

http://anausa.org/forum/index.php?topic=7958.0

Cheri, I think you have a pic of you & Mathilde also, don't you?  Who gave it to you?

The magic worked for me on Nov 7, 2008!

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

Dana

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Re: Magic Scarf - A Photo History
« Reply #4 on: October 15, 2009, 12:51:36 pm »
This is so cool, a real indication of how wonderful this group is!  I'd vaguely heard (... one sided of course!)  about a scarf, but love hearing the specifics. 
Dana
1.5 cm AN diagnosed June 2007.   GammaKnife July 19, 2007 at Univ. of Washington/Harborview GK Center, Drs. Rockhill, Rostomily. 
After yearly MRIs for 5 years, it hadn't died. So I'm now leaning strongly toward surgery.

1cANAdian

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Re: Magic Scarf - A Photo History
« Reply #5 on: November 02, 2009, 08:22:20 pm »
Hello Everyone!

The Magic Scarf was sent to me in mid-December, 2008.  Discussion on who would get the scarf next began some time before my scheduled surgery.  I was lucky enough to have my date with the doctor postponed from November to December, two days prior to another person on the ANA calendar.  That was my ticket to my 15 seconds of ANA fame.

I was going to be the first male recipient of the decidedly feminine leopard print scarf.  Needless to say there were some witty comments from fellow ANA members.  The scarf was to be passed on to me by the prior recipient, AMD.  Unfortunately, AMD was experiencing a number of issues post op, and had to rely on her husband, Chris, to get the scarf to me.  I was really looking forward to receiving it.  

My surgery date came and went, as did my weeklong hospital stay.  Each day I’d ask my wife or daughter if the package arrived yet and each day the answer was “no.”  I was thinking it was hung up crossing the border, as I was also the first Canadian to proudly wear the Magic Scarf.

Shortly after arriving home from the hospital, I couldn't wait so I created a virtual scarf and posted that picture on the ANA forum on the 16th, and used it for my profile pic for a while.  Here is that picture:


The following day (which was 9 days post op) the Magic Scarf arrived.  I was so excited to receive it I immediately started setting up a photo shoot.  Taking it easy be darned.  With the help of my wife, Michelle, I draped a sheet for the background, set up a white photo umbrella to soften the flash effect a bit.  Michelle shot the following pictures with my Canon digital Elph camera (using an umbrella with such a tiny camera was a bit of a challenge).  I then went to work making a bit of a montage with some captions using Paintbrush & MS Word, and posted it to the forum.



Just doing this little project was great therapy for me, so the scarf was indeed creating some magic.  The scarf was accompanied by a little blue diary with pictures and some stories from previous recipients.  I added my own notes & pics, and then passed the scarf and journal on to Kathy M.

Overall, the effect of the Magic Scarf was very positive, and I was very glad to have been a recipient of its effects and the fun it produced, made evident from this comment from ANA member Captain Deb:  â€œAs you would probably guess, I am partial to the pirate look meself and am ready to leave Dr Love for you!!!!!  OOOOWWWWWEEEEEE!!!!!!!! Ain't nuthin like a scallywag in a jaunty headscarf ter steal a wenches heart!”

It would be great if the tradition went on for years to come.  Thank you to Debbie (and her friend who first cheered her up with the gift of the scarf) who’s caring nature prompted her to pass her gift on to others.

I wish the best to all future recipients, and to all ANA discussion forum members who so routinely spend so much of their personal time providing such positive and informative support to all the newbies, such as me, when they first join up.

Cheers!

Ken
« Last Edit: November 02, 2009, 08:24:56 pm by 1cANAdian »
Right side trans lab surgery on Dec 8th, 2008
4+ cm AN removed
Post Op Symptoms: SSD, tinnitus, facial numbness, minor balance issues, weakened facial nerve
Attitude: POSITIVE

NL

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Re: Magic Scarf - A Photo History
« Reply #6 on: November 14, 2009, 12:55:55 am »
Though I never actually wore the Magic Scarf myself (mine was "virtual" with the same good thoughts ;)), I was there with camera in hand as the scarf was passed along from one forumite to another.

Today, Mike ("loose screws") received the Magic Scarf from Dennis (DR), who had a middle fossa at House on November 4th. (Mike will be following Dennis with his middle fossa surgery on November 16th.)


Dennis passing the scarf (and lots of good vibes) to Mike, 11-13-09

Mike also met a couple of the other local ANer's.

Dennis, Mike, Nancy & David, 11-13-09

Mike holding the Magic Scarf, the symbol of all the good thoughts and wishes sent to him by his fellow forumites!

Julie & Dennis, Mike and his mom Diane, David, 1-13-09

Debbi - thanks again for starting this wonderful tradition!  :)

Nancy
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

sgerrard

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Re: Magic Scarf - A Photo History
« Reply #7 on: November 14, 2009, 04:43:09 pm »
I like the hand off picture, smiles before and after surgery is a good thing.

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?   ???

I'm sure Nancy and David have assured them that it is all perfectly normal, though.  ;)

Steve
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.

LADavid

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Re: Magic Scarf - A Photo History
« Reply #8 on: November 14, 2009, 06:19:53 pm »
Dennis and Mike wanted me to let you all know that it was a very manly scarf exchange. ;D
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

Tamster

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Re: Magic Scarf - A Photo History
« Reply #9 on: November 14, 2009, 06:42:24 pm »
LOL
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 #10 on: November 15, 2009, 07:01:48 am »
I received the scarf and journal from Scarlett (SML) prior to my April 8, 2009 surgery.

Here's my journal page.

My caregiver Dave mailed the scarf on to lauralynn so that she would have it in time for her surgery.   The journal followed later after I had recovered enough to create an entry and after being passed around at the NE Spring Brunch for additional entries.
I am very honored to have been a part of the tradition.
Nancy
« Last Edit: November 15, 2009, 07:30:44 am by NancyMc »
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

DR

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Re: Magic Scarf - A Photo History
« Reply #11 on: November 15, 2009, 08:06:24 am »
Thanks for posting the pics Nancy.  We had a busy day traveling home yesterday, so I appreciate the help.  And we know that Mike is in for a few hectic days, so probably no magic scarf pics from him should be expected  ;)

Although I wore it only briefly, the magic scarf was bedside with me in the ICU and hospital the entire time.  After I was discharged it took a prominent spot on the nightstand next to my bed, right beside a picture of my two boys.

The highlight of the day was meeting Mike, his mother Diane, answering questions and sharing some laughs.  I felt truly blessed to be in good enough shape to be there in person.  Of course it was great to get to chat with Nancy and David again (we missed you Laine!)  After chatting for a while inside, and probably making Mike more apprehensive about catheters than ever before ("the flaming sword of death"), we headed outside for the official handoff.  Please note that "handoff" is a term used in American football, a very manly pursuit.  Like me, Mike isn't exactly sure what he will do with the magic scarf, but I feel confident that it is in good hands and will continue to dominate acoustic neuromas.

Thanks to Debbi and the LA Gang for bringing us together in such a fun and rewarding way!
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."

Debbi

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Re: Magic Scarf - A Photo History
« Reply #12 on: November 15, 2009, 11:31:41 am »
HI All-

I am so glad that the scarf is still traveling.  I keep my friend Ellen (the one who gave it to me) updated periodically on where the scarf is.  Certainly neither of us had any idea when she gave it to me of where it would go and how many "custodians" it would have.  I smile every time I read a post about it.  You guys are all so awesome!!

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

EJTampa

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Re: Magic Scarf - A Photo History
« Reply #13 on: November 18, 2009, 08:32:14 am »
For the benefit of the newer folks (after my surgery :) ), here is a link to my pre-op pictures with the scarf:
 
http://anausa.org/forum/index.php?topic=8849.0
 
And here is a link to a thread I started to get all the pictures uploaded as the journal travelled.  I hope the journal shows up again soon.
 
http://anausa.org/forum/index.php?topic=9117.0
 
Great to see some of the new pics as well!
 
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.

another NY postie

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Re: Magic Scarf - A Photo History
« Reply #14 on: November 18, 2009, 11:45:35 am »
Wow, Ernie, I love the photos...especially of the journal...it is so strange how it disappeared.  I, too, hope it is found so all the one's who have had the scarf since then can add to it but either way, the MAGIC of the scarf LIVES ON!!! ;D
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'