Author Topic: Magic Scarf next journey  (Read 54959 times)

mindyandy

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Magic Scarf next journey
« on: March 22, 2012, 11:56:02 am »
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
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

jaylogs

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Re: Magic Scarf next journey
« Reply #1 on: March 22, 2012, 05:42:12 pm »
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
8.1mm x 7.8mm x 8.2mm AN, Left Ear, Middle Fossa surgery performed on 12/9/09 at House by Drs. Brackmann/Schwartz. Some hearing left, but got BAHA 2/25/11 (Ponto Pro) To see how I did through my Middle Fossa surgery, click here: http://www.caringbridge.org/visit/jaylogston

mindyandy

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Re: Magic Scarf next journey
« Reply #2 on: March 22, 2012, 05:46:56 pm »
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.
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

lrobie

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Re: Magic Scarf next journey
« Reply #3 on: May 12, 2012, 04:18:39 pm »
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
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

CHD63

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Re: Magic Scarf next journey
« Reply #4 on: May 13, 2012, 06:26:59 am »
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
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

LADavid

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Re: Magic Scarf next journey
« Reply #5 on: May 15, 2012, 07:55:27 pm »
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.
Right ear tinnitus w/80% hearing loss 1985.
Left ear 40% hearing loss 8/07.
1.5 CM Translab Rt ear.
Sort of quiet around here.
http://my.calendars.net/AN_Treatments

CHD63

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Re: Magic Scarf next journey
« Reply #6 on: May 16, 2012, 06:24:34 am »
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
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

mindyandy

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Re: Magic Scarf next journey
« Reply #7 on: May 16, 2012, 07:00:02 am »
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
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 #8 on: May 16, 2012, 10:49:03 am »
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
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

mindyandy

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Re: Magic Scarf next journey
« Reply #9 on: May 16, 2012, 01:53:14 pm »
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.
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

lrobie

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Re: Magic Scarf next journey
« Reply #10 on: May 17, 2012, 10:44:10 am »
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
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

mindyandy

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Re: Magic Scarf next journey
« Reply #11 on: May 17, 2012, 01:20:23 pm »
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
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

davecz

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Re: Magic Scarf next journey
« Reply #12 on: June 03, 2012, 01:09:59 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:

« Last Edit: June 03, 2012, 02:46:22 pm by davecz »
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

Jim Scott

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Re: Magic Scarf next journey
« Reply #13 on: June 03, 2012, 01:16:01 pm »
Dave ~

Congratulations on your recovery and kudos to you for the neat Magic Scarf case!

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

pjb

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Re: Magic Scarf next journey
« Reply #14 on: June 03, 2012, 02:28:55 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 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:



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,
Diagnosed with a 1 cm. AN had Retrosigmoid
Approach surgery July of 2009, several problems after surgery.

 


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