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Author Topic: The Magic Scarf  (Read 8349 times)

sues1953

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The Magic Scarf
« on: April 01, 2010, 08:49:39 pm »
Hello Everyone,

I'm wondering where the Magic Scarf is now and if it might be available for my surgery May 20th.  I would be so honored to have it.  Carol Ann (iluvpups) is having surgery at the same hospital one week after me and I could make sure that she has it as well.  I am not sure who has it now or how I can get it.  Please let me know.  I will be out of town for the next week but I will check in when I get back.

Thank You.

Sue in Michigan
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3.2 cm AN Right side diagnosed 12/4/09
Translab surgery May 2010 with Dr. Jack Kartush and Daniel Pieper at Michigan Ear Institute.
Successful surgery .5mm left on facial nerve.  Full facial movement. SSD, Tinnitis, tongue and lip numbness.  No headaches.  Back to living life.

kiwi

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Re: The Magic Scarf
« Reply #1 on: April 01, 2010, 11:01:07 pm »
Hi Sue

I have the "Magic Scarf" here in New Zealand and would be very glad to post it to you.  Can you please let me know your address and I will post it next week after the Easter break.

Jacqui
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3.6cm AN Left side diagnosed Dec 09.
Translab surgery 16th March 2010
Left SSD, Facial Paralysis
CSF Leak surgery 11th May 2010

Debbi

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Re: The Magic Scarf
« Reply #2 on: April 09, 2010, 12:42:09 pm »
Wow - I can't believe that the Magic Scarf has traveled all the way to New Zealand.  Very cool!  it started out on my head in NYC nearly two years ago, so it's quite well traveled.  Glad it is still going strong!  The friend who gave it to me when I was in the hospital is quite amazed at how many heads it has graced.

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

sues1953

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Re: The Magic Scarf
« Reply #3 on: April 12, 2010, 07:50:32 am »
HI Jacqui,

It's good to hear that your doing well and that the surgery is over  :)   I have a little over 5 weeks to wait yet.  I would love to have the scarf so I'm sending you my address.  I'm not sure if anyone will need it before that but no one has posted.


Thank you!  Sue

(Hi Sue.... please share private contact details in PM as we do not post such info publically for your online/internet safety. Thanks! Phyl)
« Last Edit: April 12, 2010, 07:54:55 am by ppearl214 »
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3.2 cm AN Right side diagnosed 12/4/09
Translab surgery May 2010 with Dr. Jack Kartush and Daniel Pieper at Michigan Ear Institute.
Successful surgery .5mm left on facial nerve.  Full facial movement. SSD, Tinnitis, tongue and lip numbness.  No headaches.  Back to living life.

AMD

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Re: The Magic Scarf
« Reply #4 on: April 23, 2010, 09:46:27 pm »
The Magic Scarf was awesome!   Thanks again to whoever started that, along with the journal that goes with it.  It was wonderful to have and glad to see it is still making it's way around to as many as possible.

-Amy
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Left side 1.7 cm AN diagnosed 7/30/08
Misdiagnosed for 8 + years
Surgery, Sub-occipital, 11/17/2008 at Indiana University Hospital
Left SSD
Tumor much larger than expected. Facial nerves intact, but had RARE swelling resulting in brachial plexus injury and tracheostomy after surgery.

sues1953

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Re: The Magic Scarf
« Reply #5 on: April 24, 2010, 05:57:17 am »
I guess the journal has disappeared I wonder if anyone out there knows where it is ???  I could start a new one.  Sue
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3.2 cm AN Right side diagnosed 12/4/09
Translab surgery May 2010 with Dr. Jack Kartush and Daniel Pieper at Michigan Ear Institute.
Successful surgery .5mm left on facial nerve.  Full facial movement. SSD, Tinnitis, tongue and lip numbness.  No headaches.  Back to living life.

Pooter

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Re: The Magic Scarf
« Reply #6 on: April 24, 2010, 08:42:33 am »
I think we need to get a BAHA safety line for the scarf and journal.  It's gone missing 2 or 3 times now. ;)

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

Syl

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Re: The Magic Scarf
« Reply #7 on: April 24, 2010, 10:05:03 am »
I think it's wonderful that the Tale of an AN Traveling Scarf continues to be written.

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.

cindyj

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Re: The Magic Scarf
« Reply #8 on: April 24, 2010, 11:16:22 am »
Quote from: AMD on April 23, 2010, 09:46:27 pm
The Magic Scarf was awesome!   Thanks again to whoever started that, along with the journal that goes with it.  It was wonderful to have and glad to see it is still making it's way around to as many as possible.

-Amy

It was Debbi (she posted here on April 9).  Yes, it is so awesome that it still is traveling. Brian, you're right, we need a tracking device on it in case it goes missing again!  It meant so much to me to have it for my surgery - I hope it continues this journey for many years to come!

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

leapyrtwins

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Re: The Magic Scarf
« Reply #9 on: April 24, 2010, 11:19:19 am »
Sue -

although the magic scarf has been a mainstay for some, it came about way too late for some of us to have it for our surgery and we didn't suffer because of it.

I guess my point here is, don't sweat it.  If it finds its way to you, great.  If not, you'll be just fine without it.

Best,

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

lori67

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Re: The Magic Scarf
« Reply #10 on: April 24, 2010, 12:02:06 pm »
In my next life, I want to come back as a Magic Scarf!  It seems to travel a lot more than I do!   :D

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.

Rivergirl

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Re: The Magic Scarf
« Reply #11 on: April 24, 2010, 03:48:27 pm »
Love the idea of the magic scarf it has covered so many brave heads, I would be honored to wear if I ever had surgery,  good luck Sue with your surgery.
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Diagnosed 6/2008
Right AN 2cmx8x9
Sub-Occipital at Mass General with Martusa and McKenna on 5/31/11
Right SSD, very little taste
I think I will make it!

Lynn Mc

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Re: The Magic Scarf
« Reply #12 on: May 03, 2010, 06:55:29 am »
I had the Magic Scarf in January.  There was no journal with it.  I think someone knew where the journal was.  Can't remember?   I then forwardered the Scarf to Kiwi.  Really hope the journal surfaces soon!

Happy Trails,
Lynn
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Translab 01/22/10.  12 x 11.7 x 8.2 mm.
Dr's McKenna/McCall at Mass Eye & Ear,
Dr. Barker at MGH. 
SSD - No other significant problems post surgery, just some minor inconveniences!  Yipee!!
BAHA implant 04/08/11 Dr. Merchant
BAHA Gotcha 07/25/11
"Life is Good"

sues1953

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Re: The Magic Scarf
« Reply #13 on: May 03, 2010, 09:42:02 am »
I wonder if Jacqui has the journal, she just sent me the scarf  :-\

Sue
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3.2 cm AN Right side diagnosed 12/4/09
Translab surgery May 2010 with Dr. Jack Kartush and Daniel Pieper at Michigan Ear Institute.
Successful surgery .5mm left on facial nerve.  Full facial movement. SSD, Tinnitis, tongue and lip numbness.  No headaches.  Back to living life.

kiwi

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Re: The Magic Scarf
« Reply #14 on: May 03, 2010, 03:03:21 pm »
The journal didn't make it to Lynn Mc.....why would it be with me?

Jacqui
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3.6cm AN Left side diagnosed Dec 09.
Translab surgery 16th March 2010
Left SSD, Facial Paralysis
CSF Leak surgery 11th May 2010
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