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Author Topic: Magic Scarf  (Read 7289 times)

AMD

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Magic Scarf
« on: November 27, 2008, 08:33:06 pm »
I am AMD's husband. She had her surgery Nov 17. You can read about it on my other post. She does have the Magic Scarf, and wants me to pass it on to the next person. Can someone please help me find who needs it next. She is still in a rehab facility and doesn't want anyone else to miss out.

Thank you

Chris
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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.

NL

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Re: Magic Scarf
« Reply #1 on: November 28, 2008, 02:15:59 pm »
Hi Chris,

I saw that you posted the update on your wife in the other thread - thanks so much for letting us know. I'm so glad they got the entire tumor, but I'm sorry to hear about the post-op complications. It's sounds like you both had a difficult start in the recovery process, but it's good to hear she is beginning to make progress. Please keep us updated when you can - my prayers are with her for a speedy recovery.

As far as the Magic Scarf goes, it is SO sweet of Amy to be thinking of other "pre-posties" awaiting their surgery dates! I know that Cindy, who had the scarf before Amy, was also anxious to send it off while she was recovering from her own surgery. (I believe they worked out the details pre-surgery.)

I'm sure no one would mind if Amy held onto the scarf until she's feeling a little better. :) In the meantime, forum members can send out their good wishes to others having treatments through a "virtual" Magic Scarf.

Please send Amy our good thoughts and wishes for a smooth recovery!

Nancy L
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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

hruss

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Re: Magic Scarf
« Reply #2 on: November 29, 2008, 04:00:28 pm »
hi again!
very sweet of her!!
steve (sgerrard) (he comes first at the back off my mind) has the calender in his signature, so you can look through who is next!

Hrissy
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4.5cm right AN pressing on the brain stem, dn Sept 2007
2 Retrosigm surgeries in Oct 2007 and Jan 2008 by the Bulgarian prof. Kyrkeselian partially removed.
3rd retro surgery in Hannover,Germany by prof Samii, Oct 2008. SSD
Got rid of my bugger, temp facial paresis
hrissysexperiences.blogspot.co

sgerrard

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Re: Magic Scarf
« Reply #3 on: November 29, 2008, 08:37:14 pm »
Among others, there is Ken (1cANAdian) up in Edmonton, Canada on Dec 8th, and Priscilla (msmaggie) in Houston on Dec 10th.

Virtual Scarves are being sent to both, just in case. If you can get a hold of either one, I'm sure they would enjoy having the real magic scarf. I'm partial to Ken, since we don't get to see men wearing the leopard print scarf all that often. :)

Steve
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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.

leapyrtwins

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Re: Magic Scarf
« Reply #4 on: November 30, 2008, 10:21:06 am »
I think Ken would be an excellent choice (no offense msmaggie).

Nothing like a man in a leopard scarf, I always say  ;)

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

1cANAdian

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Re: Magic Scarf
« Reply #5 on: November 30, 2008, 02:42:42 pm »
Hello Jan & Steve,

So, are you suggesting I'd be the purrrr-fect candicate for the Magic Scarf?  That may raise the hackles of Stacy and Clinton from "What Not To Wear."  Or would all be right in the haute couture world if I obtain a pair of fuzzy slippers to match?

Cheers!

Ken
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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

leapyrtwins

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Re: Magic Scarf
« Reply #6 on: November 30, 2008, 02:58:16 pm »
Ken -

I'm thinking both Stacy and Clinton would approve - under the circumstances.

I also think that if you were to don the scarf, and/or the fuzzy slippers you mention, you'd be considered very brave indeed  ;D

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

Debbi

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Re: Magic Scarf
« Reply #7 on: December 01, 2008, 03:17:44 pm »
And, Ken, you must provide a photo of you in the scarf!   ;DFuzzy slippers are optional, although I think you'd have to go far to top Wendysig's bunny slippers...

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

MAlegant

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Re: Magic Scarf
« Reply #8 on: December 01, 2008, 05:35:09 pm »
Yes, Ken, PLEASE wear the scarf.  It will cheer you (and us) and the nurses and docs taking care of you.  Not sure I'd add the fuzzy slippers unless you have a chic nightie to go with them.
Best,
Marci
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3cmx4cm trigeminal neuroma, involved all the facial nerves, dx July 8, 2008, tx July 22, 2008, home on July 24, 2008. Amazing care at University Hospitals in Cleveland.

wendysig

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Re: Magic Scarf
« Reply #9 on: December 01, 2008, 06:05:50 pm »
Ken --
I've always said real men CAN wear the Magic AN Scarf and have looked forward to seeing that happen.  Please do wear the scarf and post pictures.  It will be a good example to the other eventual male recipients and possibly even give you a chuckle or two.  Bunny slippers are optional, I completely understand if you opt for something a little more conservative though.   ;D ;D ;D

Best wishes,
Wendy
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1.3 cm at time of diagnosis -  April 9, 2008
2 cm at time of surgery
SSD right side translabyrinthine July 25, 2008
Mt. Sinai Hospital, New York, NY
Extremely grateful for the wonderful Dr. Choe & Dr. Chen
BAHA surgery 1/5/09
Doing great!

AMD

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Re: Magic Scarf
« Reply #10 on: December 02, 2008, 08:09:38 pm »
AMD's Husband again. I just need an address and I will be happy to send it off. I know that it will bring a smile to AMD's face knowing that it is going to help the next person.

Thanks

Chris
Logged
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.

1cANAdian

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Re: Magic Scarf
« Reply #11 on: December 03, 2008, 09:11:58 pm »
Greetings,

I've sent a private message in response to your request for an address.  Wise, or not, we'll soon discover!

Cheers!

Ken
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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

leapyrtwins

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Re: Magic Scarf
« Reply #12 on: December 03, 2008, 09:14:29 pm »
Ken -

kudos to you for being a trooper!  IMO you're a great role-model for male AN patients everywhere  ;)

I'm looking forward to the pictures - and to welcoming you back very soon as a postie.

Good luck,

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

sgerrard

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Re: Magic Scarf
« Reply #13 on: December 03, 2008, 09:38:59 pm »
Ken, you have earned my respect, sir. May I suggest wearing it as a WWII fighter pilot might wear a white scarf - in fact a bomber jacket would be an excellent addition. Or perhaps the smoking jacket and pipe look, with the scarf worn as an ascot. One way or another, I'm sure you can pull this off. Photos will  be required, however.  ;)

Best wishes for Monday as well.

Steve
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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.

cindyj

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Re: Magic Scarf
« Reply #14 on: December 04, 2008, 07:33:24 am »
Hey Ken!

SO glad we get to have a man in the Magic Scarf - can't wait to see the pictures that you will, of course, put out here for us!

Good luck next week - we'll be watching for updates.

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
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