Author Topic: Magic Scarf Ready to Fly!  (Read 7734 times)

another NY postie

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Magic Scarf Ready to Fly!
« on: October 04, 2009, 07:43:30 am »
Hi!  Back in NY from LA last night...post day 11 and doing GREAT!!!  Magic scarf aided my journey and I am ready to send on the positive healing energy to whomever would like it next.  Just pm me your address. It will make you feel fierce and connected to all of us on this AN journey! :D

ALso, I don't think anyone ever found the journal?  Did it ever turn up?

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'

Jackie

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Re: Magic Scarf Ready to Fly!
« Reply #1 on: October 04, 2009, 10:42:27 am »
Hello Cheryl,

So very glad that your surgery went so well and that the magic scarf was a benefit to you! May your healing continue and may you keep that cheerful smile. We love success stories! Bless you always,
Jackie
9mm x 11mm Right Side AN mild Tinnitis, and 60% hearing loss
Diagnosed 02/04/2007
Nov.13th, diagnosed with 5mm Meningioma
9/24/08 diagnosed with Aneurysm
Wait and watch per ENT's advice and researching my options!!! What's next???

moe

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Re: Magic Scarf Ready to Fly!
« Reply #2 on: October 04, 2009, 10:58:33 am »
WOW, you sound great Cheryl!
Don't over do it. Slow and steady, your body will tell you when you overdo it.
Welcome  home!
That magic scarf really is magical..... :)
Let us know how things are going :)
Maureen
06/06-Translab 3x2.5 vascular L AN- MAMC,Tacoma WA
Facial nerve cut,reanastomosed.Tarsorrhaphy
11/06. Gold weight,tarsorrhaphy reversed
01/08- nerve transposition-(12/7) UW Hospital, Seattle
5/13/10 Gracilis flap surgery UW for smile restoration :)
11/10/10 BAHA 2/23/11 brow lift/canthoplasty

newmommyLA

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Re: Magic Scarf Ready to Fly!
« Reply #3 on: October 05, 2009, 08:56:21 am »
Hey Cheryl,
If no one else has already claimed this magic scarf, I would be honored to continue this tradition and feel lucky to have shared a good luck charm that has brought both success and comfort to so many AN patients.  I'd love to get more back story on the scarf as I'm only familiar with it since it has been in your possession.  I saw your photos when you were sporting this magic scarf and the confidence it gave you.  I'll be honest and admit that I could use a little PMA (positive mental attitude) booster now and for the days leading up to my surgery on Oct 28th.  Where did it come from originally?  How long has it been passed around and to how many patients so far?  Of course, if I have the privilege of watching over this scarf for a period of time, I'll also be so happy to say goodbye to it once I'm a postie and take great care to pass it along to another AN patient who needs to feel the love.  I live in Pasadena, CA and I'll send you my address if it isn't already spoken for.  If it is, no worries at all because this forum alone and all of the kind, compassionate people on here have already cyber-hugged me and given me the warmth I'm needing these days as I approach the unknown.

So thrilled to hear you are doing well and I hope you slept better last night sans steroids.

Amy
6mmx8mm AN rt side.  Mid-fossa surgery HEI House/Schwartz 10/28/09.  Temp facial paralysis (8 weeks), SSD, severe tinnitus & hyperacusis, tumor all gone.  12/23/09 cochlear nerve section (trying to reduce tinnitus) no major improvement on tinnitus. Trying biofeedback/neurofeedback for tinnitus.

another NY postie

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Re: Magic Scarf Ready to Fly!
« Reply #4 on: October 05, 2009, 09:06:54 am »
Hey, Amy..yes send me your address and I will pass it on...I don't know how long it has been circulating...it used to have a journal with it also but it got separated and I tried to track it down, but no one has said they have that yet.  Maybe it can get reunited with you before surgery.  It is truly a magic scarf.  I wore it at home when I got sick right before going out to CA and all through right up to surgery. Just makes you feel connected to many.  I think it has seen its fair share of AN patients.  Hopefully someone who knows a little more of the starting history can chime in here. 

Once I get more together, I want to start a thread in the community section and have everyone who has used it to post their picture with it.  That could be some history!:)

I did sleep better last night....definitely glad to be off steriods....start balance therapy tomorrow...baby steps!

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'

cindyj

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Re: Magic Scarf Ready to Fly!
« Reply #5 on: October 05, 2009, 10:45:24 am »
Yes, the magic scarf has quite a story - I hope the journal finds its way back to the scarf before too long.  If not, perhaps a new one should be started...each person with the scarf took a page to tell their story - usually a picture was attached also.  Debbi Bifulco (from NY, by the way) started this great tradition about a year and 1/2 ago or so.  It meant so much to me to be able to have it for my surgery!  Has done much magic around the country, sure it will do the trick for you too, Amy!

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

Vivian B.

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Re: Magic Scarf Ready to Fly!
« Reply #6 on: October 05, 2009, 08:18:35 pm »
Hi Cheryl,

I am happy to hear that your home and that you are doing great. Keep it up!

Vivian
CPA AN(most likely meningioma) 1.6cm by 1.5cm by 1.9cm diagnosed early March 09. Watch and Wait.

DR

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Re: Magic Scarf Ready to Fly!
« Reply #7 on: October 06, 2009, 05:52:21 am »
Amy,

I don't know the details for "magic scarf protocol" but I will arrive in LA on Nov 2nd with surgery scheduled on Nov 4th.  We could avoid shipping/handling charges and make the exchange in person, if (and only if) you feel up to it.

- Dennis
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."

NL

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Re: Magic Scarf Ready to Fly!
« Reply #8 on: October 06, 2009, 11:56:51 am »
Hi Dennis,

Since Amy lives locally, she may be home by the time you arrive. If that's the case, I'll be happy to hold onto it until you arrive.  :)

Nancy

Cheryl - Love those positive updates!  ;D
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

newmommyLA

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Re: Magic Scarf Ready to Fly!
« Reply #9 on: October 06, 2009, 04:01:13 pm »
Hey Dennis,
I like the way Nancy is thinking.  I'd be more than happy to meet up with you and hand over this magic scarf as I'm packing up at St Vincent's and on my way home.  However, I'd be happier still to be home already in Pasadena lounging on my big, fluffy couch while my husband and parents look after me and I have a front row view of my little boy swaying in his swing.  Gosh, I hope the motion of his swing doesn't make me feel sick!  He loves his baby swing and spends a ton of time in it!  At least it's not me in the swing, right?  Wherever I happen to be the day you arrive, I'll make sure we get you the magical fabric so that you have a little time to let its powers protect you.  I'm digging the idea of a dude wearing what looks to be a very fashionable piece of neck wear!  What is the print anyway, like leopard or something?  Hard to tell from the photos, but I'm sure we will all look fabulous in it! 
6mmx8mm AN rt side.  Mid-fossa surgery HEI House/Schwartz 10/28/09.  Temp facial paralysis (8 weeks), SSD, severe tinnitus & hyperacusis, tumor all gone.  12/23/09 cochlear nerve section (trying to reduce tinnitus) no major improvement on tinnitus. Trying biofeedback/neurofeedback for tinnitus.

cindyj

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Re: Magic Scarf Ready to Fly!
« Reply #10 on: October 06, 2009, 05:04:43 pm »
Yes, Amy, it's a leopard print...there is a pic out here somewhere of a guy modeling the scarf in a variety of clever ways...I'll try to find it and put a link out here...think Dennis would be only our second male to have it.  So wear it proudly, Dennis!

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

cindyj

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Re: Magic Scarf Ready to Fly!
« Reply #11 on: October 06, 2009, 05:10:33 pm »
Here's the link to Ken's fashion photos from last December

http://anausa.org/forum/index.php?topic=8297.0

So, we'll look forward to seeing some pics of you, Dennis!

cindy

(Anyone hear from Ken lately?  Wonder how he's doing?)
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

DR

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Re: Magic Scarf Ready to Fly!
« Reply #12 on: October 06, 2009, 05:37:21 pm »
Now wait a minute, if the Magical Scarf is strictly "ladies only" then I don't want to ruin it for everyone.  I'm not in Aerosmith so I don't need to accessorize my outfit with a wild scarf!!!

And no rush Amy.  If the scarf needs to go home with you for a week or two then go for it.  I don't have to worry about wee-ones in their favorite swing causing problems... and I hope you won't either!

Update - just saw the pics.  I'm thinking post-op I may skip the hat and go with a "Lawerance of Arabia" head wrap.  More like "Lawerance of Arabia just left the strip club"
« Last Edit: October 06, 2009, 05:40:45 pm by DR »
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."

annac

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Re: Magic Scarf Ready to Fly!
« Reply #13 on: October 08, 2009, 12:02:39 pm »
So happy to hear you are doing well!!!

AnnaC

2000 -Right side 1.2cm AN FRS w/ Dr. Lederman, Staten Island University Hospital
2009 - 2.4AN - some hearing loss, mild right ear pain, mild tinnitus
looking for options

MissMolly

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Re: Magic Scarf Ready to Fly!
« Reply #14 on: October 08, 2009, 03:03:05 pm »
Wow!  I'm so happy you are doing well.  I know the magic scarf was hugely helpful to me in my surgery and recovery.  Glad it is still making
'the rounds'.

Miss Molly
Diagnosed 3/09 1.1cm tumor - 4/17/09 - had grown to 1.2
Age 61 - married with three adult kids
MidFossa surgery completed June 22nd
Mass General/Mass Eye and Ear - Martuza and McKenna
The tumor has grown back.  Now working with Mass General.  Dr. Loeffler feels I am not a candidate for proton beam.