Author Topic: Magic Scarf next journey  (Read 63270 times)

cindyj

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Re: Magic Scarf next journey
« Reply #90 on: April 03, 2013, 02:29:22 pm »
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
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

terisandler

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Re: Magic Scarf next journey
« Reply #91 on: April 24, 2013, 05:55:03 pm »
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)
3/25/13- dx 18x11x14 mm AN, hearing loss in right ear x 5+ years, 5 sessions of CK completed May 2013, now a "post toastie".  Follow up MRI 4/14/14 - 15x19x11 mm. Stable with some signs of necrosis.
 Yippee!

Debbi

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Re: Magic Scarf next journey
« Reply #92 on: April 25, 2013, 06:27:05 am »
Good Luck!!
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

jgereda

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Re: Magic Scarf next journey
« Reply #93 on: August 07, 2013, 05:14:59 pm »
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

Jim Scott

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Re: Magic Scarf next journey
« Reply #94 on: August 08, 2013, 11:50:27 am »
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
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.

It is what it is

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Re: Magic Scarf next journey
« Reply #95 on: August 08, 2013, 12:51:53 pm »
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
.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.

nftwoed

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Re: Magic Scarf next journey
« Reply #96 on: August 08, 2013, 08:45:43 pm »
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.

mindyandy

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Re: Magic Scarf next journey
« Reply #97 on: August 08, 2013, 10:08:16 pm »
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
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 #98 on: August 13, 2013, 09:18:50 am »
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
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

jgereda

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Re: Magic Scarf next journey
« Reply #99 on: August 16, 2013, 07:27:44 am »
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!!!

deborahgordon

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Re: Magic Scarf next journey
« Reply #100 on: October 18, 2013, 02:10:09 pm »
I go for surgery Dec 3rd and would love to be on the list for the scarf and its journey, thank you,  deborah
Character is how you treat those who can do nothing for you.

It is what it is

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Re: Magic Scarf next journey
« Reply #101 on: October 18, 2013, 02:38:03 pm »
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
.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.

cindyj

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Re: Magic Scarf next journey
« Reply #102 on: October 19, 2013, 10:50:16 am »
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
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

deborahgordon

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Re: Magic Scarf next journey
« Reply #103 on: December 02, 2013, 09:50:59 am »
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
Character is how you treat those who can do nothing for you.

It is what it is

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Re: Magic Scarf next journey
« Reply #104 on: December 02, 2013, 10:07:36 am »
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

.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.