Author Topic: Magic Scarf next journey  (Read 54907 times)

LizAN

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Re: Magic Scarf next journey
« Reply #15 on: June 03, 2012, 05:45:14 pm »
Hello everyone,

I just found this post. Sorry for dropping out of sight for a while. Thanks for posting my health update, Clarice. I'm feeling much better now. Well I'm happy to say that the magic scarf is safe with me right now. I put it to good use during my stay in LA. I'm so glad everything turned out fine for me after my surgery. Everything is going great now that my electrolytes are in order.

I wanted to let you know that we (at my company) created a really nice protective case for the scarf and journal. I will be sending everything to Lisa this coming week for her surgery in July. If there is anyone who would like the magic scarf prior to July, please let me know.

Here is a photo of the magic scarf in use:



And this is the new case for the magic scarf:



Dave,

I will be at House right before Lisa.  My surgery is one month from today (July 3) and her's is 15 days later (on the 18th).  Last I heard from her, she will be in LA before I head home on the 14th (I think she said the 11th).  If she were willing to come by Seton Hall when she arrives in LA, I'd be happy to transfer it to her at that time.

Lisa, are you reading this?   :)

Is there anyone else having surgery even sooner than I am?

Liz
8/20/2010 - 9mm AN on left side 
Fullness, tinnitus, mild hearing loss
2/20/2011 - 8mm
4/20/2012 - 12.4 mm
Moderate to severe hearing loss, LOUD tinnitus, deteriorating balance
Facial numbness and twitching, which subsided pre-surgery
Translab at House, 7/3/2012, Slattery and Schwartz

lrobie

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Re: Magic Scarf next journey
« Reply #16 on: June 04, 2012, 09:43:30 am »
Hi All,

Dave - Is Liz the person you were referring to in your email?  Nice bike....and scarf!!

Liz - We will arrive in LA on July 11th.  We will be staying in Anaheim the first four nights, but maybe we can stop at Seton before we head there on the 11th.  If you will be getting the scarf next, we will need to arrange for the passing of the scarf. 

Lisa
6/2009 7mm x 4mm  W&W
8/2011 9.5mm x 5mm
2/2012 UPMC Follow-up , slight growth
Surgery on 7/18/12 w/Drs. Friedman & Schwartz (mid-fossa)
www.caringbridge.org/visit/lisarobie

LizAN

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Re: Magic Scarf next journey
« Reply #17 on: June 04, 2012, 11:52:29 am »
Hi All,

Dave - Is Liz the person you were referring to in your email?  Nice bike....and scarf!!

Liz - We will arrive in LA on July 11th.  We will be staying in Anaheim the first four nights, but maybe we can stop at Seton before we head there on the 11th.  If you will be getting the scarf next, we will need to arrange for the passing of the scarf. 

Lisa

Sounds good, Lisa.  Are you okay with Dave sending me the scarf first?  I'd love to have an excuse to see you before I leave on the 14th.  Will you be flying into LA?  PM me with your plans, if you want and let's see what we can work out.

Dave, has anyone else come forward as having surgery prior to July?

Liz
8/20/2010 - 9mm AN on left side 
Fullness, tinnitus, mild hearing loss
2/20/2011 - 8mm
4/20/2012 - 12.4 mm
Moderate to severe hearing loss, LOUD tinnitus, deteriorating balance
Facial numbness and twitching, which subsided pre-surgery
Translab at House, 7/3/2012, Slattery and Schwartz

sgerrard

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Re: Magic Scarf next journey
« Reply #18 on: June 04, 2012, 09:14:29 pm »
That's a pretty snappy scarf case - and a nice looking bike, too. Glad to see the scarf still going.

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.

mindyandy

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Re: Magic Scarf next journey
« Reply #19 on: June 05, 2012, 05:50:55 am »
Sweet picture Dave  :D Very happy to see your doing well. Nice magic scarf case. I'm glad to see that its moving forward.

Mindy
14mm dx 9/07. CK done Seattle  1 year MRI showed some shrinkage. 4 year MRI 2mm growth nothing conclusive. Trigminal nerve involvment Retrosigmoid Friedmand/Schwartz HEI March 7,2012

CHD63

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Re: Magic Scarf next journey
« Reply #20 on: June 05, 2012, 06:49:55 am »
Just have to say, we really owe the Magic Scarf to Debbi who initially regifted her scarf to wendysig and thus began the journey of the Magic Scarf. Both Debbi's and Wendy's surgeries were back in 2008 so they are well recovered and do not post on here much anymore.

Just wanted to make sure we give much credit to both of them for starting the Magic Scarf journey.

Plus, much thanks to Dave for taking the scarf to a new level.   ;D  ..... although I do not think I will be riding a Harley any time soon.   :o

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

davecz

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Re: Magic Scarf next journey
« Reply #21 on: June 05, 2012, 09:33:54 am »
In answer to a few comments on this thread:

Lisa and Liz, I could certainly send the scarf to Liz any time. Maybe as a backup, we could ask the woman, who has an office in Seton, if she could hold onto it for a few days. I forget her name, but Clarice has mentioned her before. I'm sure it would be safe there. Just let me know and I'll send it any time.

Clarice, I looked up Debbi a few days ago and sent her a photo of the scarf case and an update. I have not heard back from her, so I'm assuming she isn't on the ANA much. Perhaps she will read my message in the near future. Which leads to my next question. Are you the person who is keeping the scarf in between those using it for surgery? I'm just wondering because I don't remember seeing a contact person to send it to if found. I was going to include a contact person just in case it is ever
lost.

Steve, thanks for your comment. It's my pleasure to have made the pouch. I did so to mainly keep the two together. I had a heck of a time keeping the scarf and journal together when I first got it. So I asked one of my design guys to make the case and I designed the front cover. We really enjoyed the project. And I promised to give him credit for helping out.

Mindy, I really love to ride my Harley. So when I first learned that I could have serious issues with
my balance, I was worried I might not ride again. I took my bike out for a long ride, the day before I left for surgery. When I finished the ride, I parked it in my garage and covered it up. Like so many of us, I had no idea how my surgery would turn out, so I was a little sad thinking I might not ride again. However, with the encouragement of a few good friends, I got on my bike and rode it four weeks after surgery. Keep in mind, I had no balance issues at all post-op, so I wasn't in any danger. I have to say, it was a beautiful ride. I had a big smile on my face the entire time.

Well, I have some amazing news to report today. For the first time since surgery I slept all night without waking up with an intense headache. I'm so happy this morning :)

Have a great week everyone.

Dave
Diagnosed 11/23/2011, R-AN, 3.0cm, Age: 51, very
athletic, symptoms; Sudden hearing loss R Ear, balance
 issues, fatigue, tinnitus. Surgery HEI, 04/27/2012, Dr.
Friedman & Swartz. Post op, translab, 100% tumor removal,
Facial nerve intact, no balance issues, released 3 days post op,
Doing grea

LizAN

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Re: Magic Scarf next journey
« Reply #22 on: June 05, 2012, 10:49:04 am »
In answer to a few comments on this thread:

Lisa and Liz, I could certainly send the scarf to Liz any time. Maybe as a backup, we could ask the woman, who has an office in Seton, if she could hold onto it for a few days. I forget her name, but Clarice has mentioned her before. I'm sure it would be safe there. Just let me know and I'll send it any time.

Clarice, I looked up Debbi a few days ago and sent her a photo of the scarf case and an update. I have not heard back from her, so I'm assuming she isn't on the ANA much. Perhaps she will read my message in the near future. Which leads to my next question. Are you the person who is keeping the scarf in between those using it for surgery? I'm just wondering because I don't remember seeing a contact person to send it to if found. I was going to include a contact person just in case it is ever
lost.

Steve, thanks for your comment. It's my pleasure to have made the pouch. I did so to mainly keep the two together. I had a heck of a time keeping the scarf and journal together when I first got it. So I asked one of my design guys to make the case and I designed the front cover. We really enjoyed the project. And I promised to give him credit for helping out.

Mindy, I really love to ride my Harley. So when I first learned that I could have serious issues with
my balance, I was worried I might not ride again. I took my bike out for a long ride, the day before I left for surgery. When I finished the ride, I parked it in my garage and covered it up. Like so many of us, I had no idea how my surgery would turn out, so I was a little sad thinking I might not ride again. However, with the encouragement of a few good friends, I got on my bike and rode it four weeks after surgery. Keep in mind, I had no balance issues at all post-op, so I wasn't in any danger. I have to say, it was a beautiful ride. I had a big smile on my face the entire time.

Well, I have some amazing news to report today. For the first time since surgery I slept all night without waking up with an intense headache. I'm so happy this morning :)

Have a great week everyone.

Dave

Lisa and I worked it out so that I can have the scarf for my surgery at HEI and then pass it on to her.  We will be able to text each other and meet on the 11th, when she arrives in California.  As a back-up plan, I could leave it with Jeanine(?) who manages Seton.

I just want to ask one more time, is there anyone else having surgery between now and the end of June, who would like to have the scarf before me?  Going once, going twice,... :)

Liz
8/20/2010 - 9mm AN on left side 
Fullness, tinnitus, mild hearing loss
2/20/2011 - 8mm
4/20/2012 - 12.4 mm
Moderate to severe hearing loss, LOUD tinnitus, deteriorating balance
Facial numbness and twitching, which subsided pre-surgery
Translab at House, 7/3/2012, Slattery and Schwartz

ppearl214

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Re: Magic Scarf next journey
« Reply #23 on: June 11, 2012, 11:10:33 am »
All

After requests, much discussions and considerations.... I am happy to inform everyone that this thread is now a "sticky topic" as the Magic Scarf has brought so much to soooo many here on the forums. :) :) :)

The Powers That Be also appreciate all that the Magic Scarf has done for so many and is in agreement with this action. :)

The history of the Magic Scarf can be found here, done by our very own cindyj :)

http://www.anausa.org/smf/index.php?topic=15064.msg979724592#msg979724592

The journal referenced in the scarf's history is the journal that typically journeys with the scarf. There are many entries over the years... you may even have noticed one done by me and noting my CK journey.... so, know that you don't have to be a surgical patient to do entries into the journal.

See all... we listen..... and now... I congratulate you all for wanting this... and achieving this! Well done!

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

davecz

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The Magic Scarf
« Reply #24 on: June 11, 2012, 11:34:54 am »
To all concerned,

Last week, I sent an email to the ANA staff asking if they would consider creating a separate category for the Magic Scarf. As it stands now, there is no way those new to the site can find out about the scarf unless they do a search. That's assuming they have prior knowledge of the scarf's existence. Well I'm happy to report that I received an email today from the ANA staff approving this request. Yay! This is great news and is much appreciated. This will give so many more people on the ANA to learn about the Magic Scarf and how many lives have been touched by it. I'm going to get in touch with Debbie to see if she will make the first post on how it all started.

Be looking for the Magic Scarf category soon.

Dave
Diagnosed 11/23/2011, R-AN, 3.0cm, Age: 51, very
athletic, symptoms; Sudden hearing loss R Ear, balance
 issues, fatigue, tinnitus. Surgery HEI, 04/27/2012, Dr.
Friedman & Swartz. Post op, translab, 100% tumor removal,
Facial nerve intact, no balance issues, released 3 days post op,
Doing grea

ppearl214

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Re: The Magic Scarf
« Reply #25 on: June 11, 2012, 12:00:18 pm »
I'm going to get in touch with Debbie to see if she will make the first post on how it all started.

Dave,

Congrats!  Please see my commentary above... and the link to the Scarf's history, started by debbi:

http://www.anausa.org/smf/index.php?topic=15064.msg979724592#msg979724592


I've merged your thread into this one to keep things centralized and in the new "Sticky Thread"
Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

davecz

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Re: Magic Scarf next journey
« Reply #26 on: June 11, 2012, 12:28:59 pm »
Awesome! Thanks a lot. You're a fast mover.

Thanks Phyl
Diagnosed 11/23/2011, R-AN, 3.0cm, Age: 51, very
athletic, symptoms; Sudden hearing loss R Ear, balance
 issues, fatigue, tinnitus. Surgery HEI, 04/27/2012, Dr.
Friedman & Swartz. Post op, translab, 100% tumor removal,
Facial nerve intact, no balance issues, released 3 days post op,
Doing grea

ppearl214

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Re: Magic Scarf next journey
« Reply #27 on: June 11, 2012, 06:05:46 pm »
You're a fast mover.

leapyrtwin/Jan, Kaybo and Lori will also tell you the same  ;)  You're welcome!
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Debbi

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Re: Magic Scarf next journey
« Reply #28 on: June 12, 2012, 08:07:38 am »
First of all, many thanks to Dave for taking the initiative to make this a sticky topic - what a great idea!

I haven't been on the Forum much in recent months - but the other folks in the AN world are never far from my thoughts.  I just "celebrated" my 4-year surgical anniversary on April 30 - hard to believe it's been that long.  It was in July of 2008 that I met Wendysig in NYC and passed the scarf to her.  My idea to give her the scarf was spur-of-the-moment and I never dreamed that it would be the start of a world-wide journey for the scarf!  This speaks to the heart, generosity, and caring of the people in this community. 

I look forward to following the journey of the scarf, and to following your journeys, too.  Good luck to all who are facing treatment! 

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

cindyj

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Re: Magic Scarf next journey
« Reply #29 on: June 14, 2012, 12:49:47 pm »
Awesome pic with the Scarf, Dave!  So glad the Scarf seems to be traveling quite a bit lately.  Perhaps someone who gets it in the near future could go into the link which Phyl referenced in her post here to add to the "history" of the Scarf.  Would be great to see where it's been since that was done a year or so ago.  Is the journal that's with it (in the spiffy new case :D) the original one from the start of the Scarf?  Know it was missing in action for a bit a while ago...

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