Author Topic: Magic Scarf next journey  (Read 54957 times)

davecz

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Re: Magic Scarf next journey
« Reply #30 on: June 22, 2012, 01:55:10 am »
Hi Cindy

When I got the scarf and journal in April, I read all the entries in the journal that dated back to Debbie. So I'm assuming it was the original journal. In the back of the journal, I printed instructions on what to do with the journal if found. I included the address to the ANA. I figured that would be a good place to return the journal to if it were lost again. I believe Clarice mentioned that she made photocopies of the journal when she had it. I hope that the Magic Scarf will continue it's journey for years to come. And that it will continue to bring good fortune to those who receive it.

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

It is what it is

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Re: Magic Scarf next journey
« Reply #31 on: June 22, 2012, 06:21:24 am »
The scarf story is inspiring in the support from the AN community that it represents.  My surgery is scheduled 8/1/12 with HEI.  Whenever I have questions,concerns, fears---I turn to this discussion list for comfort.  Thanks for sharing your stories and experiences. 

Karen F.
.7cm, left side AN , Tinnitus, Hearing preserved, Middle Fossa 8/1/12 at HEI, Drs Friedman and Schwartz, Sharing your story is extremely helpful to me.

LizAN

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Re: Magic Scarf next journey
« Reply #32 on: June 22, 2012, 09:03:36 pm »
The Magic Scarf arrived today!  Woohoo!

I feel so fortunate to have it in my possession, as a constant reminder of the support that is available here on this forum, a tangible reminder that I will be okay and that others have gone before me.

Dave, thank you so much for sending the scarf and the journal to me, in the lovely new pouch!  I have read all of the journal entries and will read them again.

Thanks to all of you who have worn the scarf and who have contributed your entries to the journal.  Such good energy is attached to them both.  What a legacy!  What an honor to have them with me during this difficult time. 

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

It is what it is

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Re: Magic Scarf next journey
« Reply #33 on: June 22, 2012, 09:27:20 pm »
Liz, please let us know how things go for you.  You are in my thoughts and prayers. 

Karen
.7cm, left side AN , Tinnitus, Hearing preserved, Middle Fossa 8/1/12 at HEI, Drs Friedman and Schwartz, Sharing your story is extremely helpful to me.

LizAN

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Re: Magic Scarf next journey
« Reply #34 on: June 23, 2012, 08:06:21 pm »
Liz, please let us know how things go for you.  You are in my thoughts and prayers. 

Karen

Thank you, Karen.

Send me your email address via Private Message, and I'll add you to my Caring Bridge site.  That goes for anyone else who is interested, as well.  If you don't know how to PM, ask us.  We are a helpful group.

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 #35 on: June 24, 2012, 07:19:44 am »
Questions - for those of you who have had The Magic Scarf, were you allowed to have it with you during surgery?  If not, what did you do with it during that time?

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 #36 on: June 24, 2012, 11:56:48 am »
Questions - for those of you who have had The Magic Scarf, were you allowed to have it with you during surgery?  If not, what did you do with it during that time?

Lisa

Good question, Lisa!
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

CHD63

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Re: Magic Scarf next journey
« Reply #37 on: June 24, 2012, 12:25:48 pm »
I seriously doubt if any hospital/surgeon will let you take any non-hospital dispensed items into a surgical suite.  I did not even ask.  However, my husband had it with him during my surgery.

In my mind, the Magic Scarf is a physical reminder of the love, caring, and empathy of this forum for each person undergoing treatment for their acoustic neuromas ..... not necessarily "magic."   :)

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

LizAN

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Re: Magic Scarf next journey
« Reply #38 on: June 24, 2012, 01:27:07 pm »
I seriously doubt if any hospital/surgeon will let you take any non-hospital dispensed items into a surgical suite.  I did not even ask.  However, my husband had it with him during my surgery.

In my mind, the Magic Scarf is a physical reminder of the love, caring, and empathy of this forum for each person undergoing treatment for their acoustic neuromas ..... not necessarily "magic."   :)

Clarice

Good point Clarice, about non-hospital dispensed items.  I'd imagine they are careful about that.

I think it might be comforting for my partner to have it while I'm in surgery.  I won't need it, as I will be asleep.

To me, "love, caring, and empathy" are magical!

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

It is what it is

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Re: Magic Scarf next journey
« Reply #39 on: June 24, 2012, 01:51:46 pm »
"love, caring, and empathy" are magical!" 

I couldn't agree more.   :)

k
.7cm, left side AN , Tinnitus, Hearing preserved, Middle Fossa 8/1/12 at HEI, Drs Friedman and Schwartz, Sharing your story is extremely helpful to me.

davecz

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Re: Magic Scarf next journey
« Reply #40 on: June 25, 2012, 12:23:39 am »
At the time of my surgery, I decided to keep the scarf inside a 6" x 6" ziplock bag and put it inside my backpack (at Seton). I too didn't think it would be wise to carry it with me to surgery. After surgery, my friend brought my backpack to my room. I had it with me the rest of the time I was in the hospital. Just knowing it was nearby was enough for me. I was fortunate enough to have the scarf a little longer, so I was able to take it with me on a few trips.
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

JW123

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Re: Magic Scarf next journey
« Reply #41 on: June 25, 2012, 07:23:45 am »
Hey, I enjoyed reading the scarfs adventures on the forum. Maybe some of its powers can rub off on my relentless headahces/pain. Is there a queue that I need to get in to touch and feel the powers of the almighty scarf haha? I am guessing it would be its longest journey to date if it was sent to me for a short visit. It could be the 'international magic scarf'.

correction: I just reread 'Mar '10 Jacqui (kiwi) New Zealand'. That may be further than Korea is.
-Joe
« Last Edit: June 25, 2012, 07:27:24 am by JW123 »
Left side VS - 2.0 x 2.7
Retrosigmoid on Oct 17th 2011
Surgery at Mayo Clinic with Dr. Link & Dr. Driscoll
SSD left side, delayed temporary facial weakness, ongoing severe headaches.

lrobie

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Re: Magic Scarf next journey
« Reply #42 on: June 25, 2012, 11:52:24 am »
"love, caring, and empathy" are magical!" 

Having it with me, although not physically during surgery, will increase my awareness that so many have travelled this journey before me.  Those who have supported each other with love, caring and empathy.  Knowing this will help me get through the coming weeks.

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

cindyj

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Re: Magic Scarf next journey
« Reply #43 on: June 25, 2012, 01:31:36 pm »
The last person I have listed on the "history" of the Scarf (see thread link below) was May 2010 - Carol Ann (iluuvpups) had it...

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

Who has had it since then?  And, when, if known?

Would like to add to the list so others here on the forum can see where it has been...Didn't it go to the ANA symposium a couple of years ago?  I should add that, too...

Hope it continues flying around for years to come!

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

LizAN

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Re: Magic Scarf next journey
« Reply #44 on: July 02, 2012, 11:24:44 pm »
Thanks to Dave, I have the scarf and journal with me at Seton Hall.  Lisa will be picking up from me when she arrives in a week or so.

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

 


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