ANA Discussion Forum
AN Community => AN Community => Topic started by: mindyandy on March 22, 2012, 11:56:02 am
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I have the magic scarf and am looking to see who is next. I have to say this scarf worked its magic for me & would like to keep the tradition going. I had added to the journal.
Mindy
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Oh my....so you have the scarf eh? Welcome to the club! :) It is quite amazing that tradition has still going on! I am sure whoever ends up with it next will surely benefit from it as we all have done! :)
Jay
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Thanks Jay. Congratulations by the way ;D I received a message and will be sending if off next week. I think its neat to read the journal.
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Is the Magic Scarf's destination chosen by the person who last had it? I'm curious because I think it would be great to have it during my surgery. I read a lot about it and saw many pictures of those who have worn it on Nancy's posts. It's been almost two years since Nancy has posted.
Lisa
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Lisa .....
I'm quite sure Dave (davecz) still has it after his surgery two weeks ago. If he does not see this and respond, I will send him a note (or you can PM him). I think he is still recovering from his surgery so has not been on here very much lately.
Clarice
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It's great to see that the scarf is still making its journey. At one time it got a bit lost. I've seen it pass through LA a few times. If you happen to see this post, Mindy, how many entries are there now? If memory serves, Debbi was the first to wear the magic scarf in about April 2008. CindyJ did a history of it a year or two ago.
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I made a copy of all of the pages up through mine, but I did not count the entries. If Mindy does not know how many there were, I will look it up and count the entries.
Hope Dave is all right. He has not responded to my email yet.
Clarice
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David I'm not sure how many enteries their were. I do remember reading the stories. I saw Davecz was online here yesterday. He didn't post. I'm sure he will when he is ready. I should have met up with you and the LA gang while I was there.
Mindy
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Just had an email from Dave. He was back in the hospital/ICU with an extreme electrolyte imbalance. Home now and doing better. He asked me to post a quick note explaining why he has not been posting. Hopefully he will feel up to it again soon. A scary time, for sure!
Clarice
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Glad to hear he is doing better. I had low potassium during and after surgery. Was on IV for 2 days. Hope to hear from him soon.
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Hmmm...I wonder if it has anything to do with the AN surgery. Thank you for the update, Clarice. I'm glad he is home and doing better.
Lisa
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Lisa
Dave posted on his Caringbridge site today and assured us it is NOT from his AN surgery. Other issues. He may post it on here if he is up to it. Rest assure it is not from his AN surgery.
Mindy
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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:
(http://i1048.photobucket.com/albums/s367/cz2806/Harley-Ride-scarf-ana.jpg)
And this is the new case for the magic scarf:
(http://i1048.photobucket.com/albums/s367/cz2806/magic-scarf-open.jpg)
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Dave ~
Congratulations on your recovery and kudos to you for the neat Magic Scarf case!
Jim
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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 the magic scarf prior to July, please let me know.
Here is a photo of the magic scarf in use:
(http://i1048.photobucket.com/albums/s367/cz2806/Harley-Ride-scarf-ana.jpg)
And this is the new case for the magic scarf:
(http://i1048.photobucket.com/albums/s367/cz2806/magic-scarf-open.jpg)
There is a couple of people at house now a Rebecca and a Ginelle might be too late..Glad your doing so well and continue to do so ......
Best Wishes,
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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:
(http://i1048.photobucket.com/albums/s367/cz2806/Harley-Ride-scarf-ana.jpg)
And this is the new case for the magic scarf:
(http://i1048.photobucket.com/albums/s367/cz2806/magic-scarf-open.jpg)
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
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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
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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
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That's a pretty snappy scarf case - and a nice looking bike, too. Glad to see the scarf still going.
Steve
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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
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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
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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
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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
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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 (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
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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
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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
(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
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Awesome! Thanks a lot. You're a fast mover.
Thanks Phyl
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You're a fast mover.
leapyrtwin/Jan, Kaybo and Lori will also tell you the same ;) You're welcome!
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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
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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
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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
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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.
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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
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Liz, please let us know how things go for you. You are in my thoughts and prayers.
Karen
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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
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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
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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!
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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
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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
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"love, caring, and empathy" are magical!"
I couldn't agree more. :)
k
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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.
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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
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"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
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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
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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
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Hurray!!!! Now you have tangible proof that we are all there with you. (I sure hope Lisa can leave it at HEI or Seton Hall for the two of us immediately following both of you.) You are almost a postie! Thoughts and prayers are with you all day tomorrow.
karen
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Just wanted to let everyone know that I passed the scarf on to Lisa Robie on the 11th. It was a big help to have it with me.
For those of you with access to my Caring Bridge site, I added pictures yesterday. If you don't have access, PM me your email address and I'll set it up for you.
I can also post pics here, but it's not likely to happen today. Time for me to rest...
Liz
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FYI - It was nice to meet Liz and for her to pass the Magic Scarf on to me. I cherished my time with it and have passed it on to Karen. I haven't been on for a while, but her surgery is scheduled for tomorrow. I had to leave the Scarf with Laurie at HEI as I was leaving LA before Karen was arriving. Good luck to you, Karen.
Lisa
P.S. I have a picture on my Caring Bridge site, but will also try to post it here as well.
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Thanks Lisa! I received the scarf and was able to share it with a 17 year old who had surgery immediately after mine.
Who would like it next??????
Karen
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Is it possible to put "dibs" in for Oct 26? I will be hitting MassGen with Barker/McKenna then. Chris
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Yes! Please send me your mailing address and I will mail it to you. Maybe you can PM me with that information?
My thoughts are with you.
Karen
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I'm down for surgery on November 28th and if possible would love to have it also.... I think it would be a comfort to have it but understand if I can't get it. I know there are alot of surgeries going on...
Prayers to all who are facing surgery right now!!
Glenda
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I passed it on to Chris. Hopefully you'll be able to receive it for your surgery. You'll be in my thoughts and prayers.
Karen
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Glenda,
I have the scarf! My surgery is next week, so there is plenty of time to get it to you. Please send a pm with your information and the scarf will be there for you also. Chris
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Chris, please post updates. You are in my thoughts and prayers. The scarf is representative of all of is in the AN community offering you caring and support through your surgery.
Karen
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Hi Chris!!
My thoughts and prayers are with you! Praying you have a very successful surgery and recovery!
Glenda
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I felt like I wasn't alone in this journey by having the magic scarf with me. I'm glad that you both will be able to have it with you.
Lisa
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Hi Chris!
I know that your surgery is coming up tomorrow. You are in my thoughts and prayers! If possible I hope someone posts and lets us hear from you! Wellness hugs to you!
Glenda
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Ditto to everything Glenda said to Chris. Thanks again Lisa for passing on the scarf to me so I could pass it on to Chris.
Karen
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I am home!!! feeling great. surgery was Friday. Spent Saturday in neuuroe icu, got out about 2 hours ago and drove back to CT. but this is all I can type now. Will definetnatly write more tomorrow.
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Congratulations!!!!! I'm anxious to hear more when you are able. Welcome home postie. :)
Karen
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So happy for you Chris..... Now you have joined the to the posties !!! Keep us posted...
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Glenda - the scarf is on the way! The book and pictures are so inspirational! Chris
PS moving better today. I can actually type!
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Welcome back to the world. I'm glad to hear you are moving better and typing. Any details about your experience and how you are now that you are willing to share? With caring,
karen
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Chris
So happy to hear from you as a postie and to hear how well you are doing!! You have given me great hope! Looking forward to wearing the scarf and reading the stories!!! Welcome back!!! Please give us updates on how you are doing.
Is there anyone out there that would like to have the scarf after me?
Glenda
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Hey, guys! Is the Scarf still on the move? Who has it now? I want to (eventually ;)) add to the list I started awhile back of everyone who has had the Scarf since its beginning with Deb Bifulco...will track that page down and add it here when I have a minute...
Take care, all!
cindy
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Hi everyone! Could someone explain the magic scarf? I am having my surgery on February 11 and would love any kind of magic I can get :)
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I am new and just had the scarf for my surgery on Oct 26.
It is a book and scarf that is passed to those having surgery... the book includes photos and stories of the surgery
and recovery. Every time I wore the scarf, I thought of everyone else who wore it before me and their successes.
It is such comfort. Try to get it before your surgery in February. Good Luck!!!
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my surgery is booked for the 25th January & although i doubt the scarf would makes its was here i'm sure it's magic will drift across waters and through computer screens and be with me also :)
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I have the scarf and will gladly send it to whoever would like it next. Please inbox me your address as to where to mail it. It is comforting to have.
Glenda
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@ Glenda, I just sent you a private message about the scarf. If its still available I would love to have it for my surgery. It a great idea and I would love to be a part of it. Thanks!
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Hi Kathy,
I have not heard from anyone else so I will send the scarf your way. I will probably get it out to you the first of next week. I hope you enjoy having it and I will be praying for you and your doctors on your upcoming surgery!
Glenda
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Hi Glenda, that is so awesome, thanks Glenda!!!! I know that scarf has lots of Juju and will help me when I have my surgery. I am looking forward to reading all the entries in the journal. Do you want me to send you some money for postage? I would be glad too. I promise to take really good care of it.
Kathy
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I just wanted to say that the magic scarf was indeed a comforting scarf for me, just knowing that I had it before my surgery and that everyone's well wishes were firmly implanted in that material. It had flown all the way to the USA to little ole New Zealand and put a big smile on my face when I received it in the post! Unfortunately the journal never got to me - so I will keeps my pics of me and the scarf.
Good luck to all those having surgery this year and may you have a speedy recovery.
Jacqui
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Jacqui .....
Maybe you could send your story and pictures to Kathy and she could insert it into the right date. I did that with several people when I had it because the journal and scarf were separated for a period of time before I received it.
Dave had a neat case made for the two things so it should not get separated again.
Just a thought because we'd really like your story and pictures to be included.
Clarice
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Great idea Clarice!!! Jcaqui send me a private message and I can give you my address if you want to do that. I'm looking forward to reading everyone entries in the journal.
Kathy
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Kathy, do you know yet when your surgery is? I may have missed the info, but didn't see it in your posts.
Keri
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Hi Kathy,
I mailed the scarf to you today. I laundered it and got it smelling nice for you :). Please let me know how you are doing with your surgery. I'm sure you will find comfort in having the scarf! Praying for you!
Your AN friend!
Glenda
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@ Glenda I will let you know as soon as I get it, thanks a lot. @ Keri my surgery is scheduled for March 14th at Emory in Atlanta.
Kathy
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Hey, Kathy! So glad you are getting the Magic Scarf! It really is a special tradition...I would love to see it again when I come visit with you on your pre-op day - especially the journal (I had it back in Nov 08). I started a list here awhile back with all the recipients and I would love to add everyone else who has had it to the list...
Of course, there is plenty of virtual Magic going around for everyone here on the forum who needs it, whether or not you actually ever have the Scarf ;D
Cindy
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Hi Glenda,
I just wanted to let you know that the Magic Scarf made it here safe and sound. It might be a few days till I can check out the journal. Having a b-day party for my hubby tomorrow and I have lot to do plus my daughters are surprising there Dad and flying in from CT. Lots of company this weekend. Can't wait to read all the posts. I already can feel the positive energy from it. Thank you for sending it to me Glenda and continued success on your recovery.
Hugs, Kathy
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Hi Kathy!
So glad the scarf made it to you! I was out of town to visit the Dr's so am just checking in. I'm sure you will enjoy having the scarf as all of us have. Hope the vibes comfort you :) I will continue to check in with you and praying all goes well with your surgery and recovery. My husband has had surgery at Emory and it is a WONDERFUL place!! I know you will be well taken care of!
Hugs (())
Glenda
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@ Glenda, I have been enjoying the Magic Scarf. I wore it to Bunco the other night hoping it would bring me some luck (been on a losing streak) but still no luck. I've also worn it when I rode my motorcycle. Surgery is next week, UGH!!! Are you on the AN Facebook? Its a great site and like the forum great people on it. I met Mary from CT that is having surgery the same day as me. We are AN sisters!!!
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It's true, Kathy and I are AN sisters! (And I definitely could use a little magic that day even if I don't have the official scarf!)
Mary
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Kathy and Mary!
Praying you both have successful surgeries and speedy recoveries!!
Mary, even though the Magic Scarf can't be in two places at once we will send those healing vibes out to you!
Looking forward to hearing from you both as posties!!
Glenda
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I'm adding my prayers and thoughts to both of you as well.
karen
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I was able to meet with Kathy on Wed after her pre-op appt at Emory...was so nice to visit with her and her husband, Art! And it was great to see the Magic Scarf again and to see all the entries made in the journal since mine over 4 years ago! So awesome that the tradition continues! And the Magic worked for Kathy! Art posted on Facebook that she came thru surgery fine yesterday!
Mary, hope all is going well for you, too!
Cindy
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Anyone having surgery soon??? The Magic Scarf is available. Email me at akrhoades@cox.net if interested.
Kathy
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Mary,
I have been thinking about you and hope you are doing well after your surgery.
Miranda
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Hi Everyone,
Well the "Magic Scarf" is on its way to Connie Marie in Michigan. Connie will be having her surgery on April 15th. I wish Connie all the best in her upcoming surgery. Connie, we all will be thinking of you and wishing you a speedy recovery.
Your An Sister,
Kathy
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Thanks for keeping the magic going, Kathy!
Connie, I know the Scarf will bring magic to you! And, we will be wishing the best for you on the 15th!
Don't forget, all, the Magic works for everyone here, whether you physically receive the Scarf or not - it has lots of virtual magic!
Cindy
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I enjoy reading about the magic scarf. I am going to start cyberknife next week and am working on manifesting the reduction/disappearance of my AN so surgery will not be in my future! 8)
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Good Luck!!
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I am scheduled for surgery at House on September 11 and Dr. Goddard and Swartz will do my surgery. They are not sure if it is an acoustic neuroma or a menengioma but doing the middle fossa approach. I am hoping to find suggestions and some help about what my head will be like after my surgery. Will they shave half of my head and should I be stocking up on scarfs or hairbands to hide the mess? How big is the incision and how can I hide it? Do others go ahead and cut hair short so it will grow at same rate or what do people do? Just freaking about one thing I hope I can prepare for.
Julie
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Hi, Julie ~
I have good news for you! First, you're in good hands at HEI. Second, the surgeons do not shave half your head but only a very small section that is easily covered with the rest of your hair. Frankly, having your hair shaved/cut is really a non-issue in AN surgery, although I can understand why the idea would unnerve any woman. I'm a guy with a relatively short haircut and although the incision site was a bit obvious after the surgery, it healed quickly and within about 6 weeks my barber was easily able to cut my hair in a way to hide the scar.
I'm sure some of our female AN patients who have undergone AN surgery will add to this thread and assure you - from a female perspective- that hair issues are not going to complicate your AN surgery.
Jim
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Hi Julie,
Jim is correct. I had middle fossa surgery with the same neurosurgeon exactly one year ago. (By the way, he is a very very gifted surgeon.) It is quite amazing how narrow of a line they cut of your hair on the side of the tumor. Even with the staples still in, I parted my hair down the middle like I usually do and the incision and staples were totally covered. No one could tell I just had brain surgery. :)
Please feel free to ask away. Many of us are happy to share our experiences.
I wish you good healing,
karen
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Julie;
I just can't understand why the Drs cannot tell an AN from a meningioma. From reading the MRI, a meningioma always arises from an area of the brain which is termed the menginges. The meninges is actually quite close to the brain surface and visible in several areas. The meningioma would have a point of attachment.
Much as the AN would have a point of attachment ( 80% vestibular nerve ). Unless the scan really isn't so good? I've read a couple other reports like yours before. It bothers me because if the tumor is attached to the meninges, there's no point in opening the IAC which is typical of MCF surgery.
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Hi Julie
Great place for brain surgery. I had Friedman & Schwartz. You will be amazed how little they shave off. I had retro so mine was in the back & easy to hide. I'm not sure about mid fossa. You are in excellent hands. I never heard of Goddard. I wonder if he's taking dr friedmans spot.
Mindy
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Hi Mindy .....
Dr. Goddard was just completing a fellowship at HEI when I had my surgery in May, 2011. (In fact he did the fat graft during my surgery.) He was hired right after his fellowship (I think .....) so has been a neurotologist there since 2011. He was involved as a presenter at the ANA Symposium last week.
Clarice
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Thank you all for your replies. Its really helpful to get answers to some of the fears (however silly) that are creeping up on me as time gets near for surgery. Thank You!!!
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I go for surgery Dec 3rd and would love to be on the list for the scarf and its journey, thank you, deborah
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My thoughts will be with you in early December and I hope you are able to connect with the scarf. It brought me peace knowing it had been with so many wonderful people. karen
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Hey, Deborah! Consider it done! I will see that the Scarf gets to you if you will PM me your mailing address...I don't have it, but know where it is ;)
I still intend to update the list of those who have had the Scarf...here's the link for that thread for anyone who wants to see where it's been, however, there are almost 3 years worth of recipients who need to be added to the list..I don't know who they all are, so if you had it and are not on the list, please post it here or there - thanks!
http://www.anausa.org/smf/index.php?topic=15064.msg979724592#msg979724592
Cindy
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off to have my AN removed tomorrow. I have the magic scarf and am ready for it to work its magic and get me back on my feet quickly. See everyone soon, Deborah
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Deborah, the scarf holds the support and caring of all of us. I'm glad you will have it with you. Please keep us updated. Karen
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Hi, all! Finally, I updated the list of Scarf recipients! If I missed anyone, please let me know! I think that a couple of people had it, but didn't have an entry in the journal...maybe? There are 44 listed here! How awesome! It is currently with Deborah who has surgery tomorrow! Wishing you the best, Deborah! I see that rm516 has surgery coming up in mid Jan...are you interested in having the Scarf? Anyone else have treatment coming up soon? Just let us know and someone will see that the Scarf gets to you! And, as always, even if you don't get to physically have the Scarf, the virtual magic it has spreads far and wide ;D Cindy
Apr 08 Debbi (Debbi) NY
Jun 08 Wendy (wendysig) NY
Aug 08 Sue (Lamsue23)
Aug 08 Cathy (Dog Lover) IA
Oct 08 Cheri (CWood) TX
Oct 08 Mathilda (mathilda) Netherlands
Nov 08 Cindy (cindyj) GA
Nov 08 Amy (AMD) IN
Dec 08 Ken (1cANadian) Cananda
Jan 09 Kathy (KathyM) OH
Feb 09 Kim (zinger 1905) DC
Mar 09 Ernie (EJTampa) FL
Mar 09 Scarlett (SML) MA
Apr 09 Nancy (NancyMc) NH
Apr 09 Laura (allegro17) AZ
Jun 09 Molly (MissMolly) MA
Aug 09 Ken (mandy721)
Sep 09 Cheryl (AnotherNYpostie) NY
Oct 09 Amy (newmommyLA) CA
Nov 09 Dennis (DR) MI
Nov 09 Mike (loosescrews) CA
Dec 09 Tammy (Tamster) UT
Dec 09 Jay (jaylogs) AZ
Dec 09 Marie (gingerbread6) MA
Jan 10 Lynn (LynnMC) MA
Mar 10 Jacqui (kiwi) New Zealand
May 10 Sue (sues1953) Mi
May 10 Carol Ann (iluuvpups) MI
Apr 11 Christine AZ
May 11 Clarice (CHD63) NC
Mar 12 Mindy (mindyandy) ND
May 12 Dave (davecz) CA
Jul 12 Liz (LizAN) TX
Jul 12 Lisa (lrobie) PA
Aug 12 Karen OR
Aug 12 Shefon (17 yrs old!)
Oct 12 Chris (AprilCL) MA
Nov 12 Glenda NC
Mar 13 Kathy GA
Apr 13 Connnie MI
May 13 Rachel MI
Aug 13 Lili MA
Nov 13 Adrienne CA
Dec 13 Deborah (deborahgordon) IN
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Thanks for your scarf update Cindy! ;D
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Wow, its been a few years since I have checked in. I'm glad to see the Magic Scarf is still making the rounds!
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I still have the scarf if anyone is set for surgery let me know I will send it!
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Hi deborahgordon .....
Do you, by any chance, still have the Magic Scarf? Or, know who might have it? There is a precious, 5-year-old girl who is scheduled for AN surgery in September, who could sure use it.
Let me know what you know .....
Clarice
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My surgery is November 3 so even having the virtual magic scarf will confer its special powers. Thank-you!