Author Topic: Newbie from NC  (Read 8762 times)

Omaschwannoma

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Re: Newbie from NC
« Reply #15 on: August 06, 2008, 07:29:02 am »
Not to "highjack" this thread, but wanted to extend my congrats to you Steve on a successful outcome with your surgery and hope each day brings you more relief.  Here's to a quick recovery on your road to wellness!
1/05 Retrosigmoid 1.5cm AN left ear, SSD
2/08 Labyrinthectomy left ear 
Dr. Patrick Antonelli Shands at University of Florida, Gainesville, FL
12/09 diagnosis of semicircular canal dehiscence right ear

Omaschwannoma

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Re: Newbie from NC
« Reply #16 on: August 06, 2008, 07:43:29 am »
Hi Lisa,

Just read a thread here from "GloriaGuaman" on SBI and endoscopic surgery.  Do a search to read about her surgery and possibly talk with her.  She posted under "Post Surgery Issues".  Hope this helps.
1/05 Retrosigmoid 1.5cm AN left ear, SSD
2/08 Labyrinthectomy left ear 
Dr. Patrick Antonelli Shands at University of Florida, Gainesville, FL
12/09 diagnosis of semicircular canal dehiscence right ear

sgerrard

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Re: Newbie from NC
« Reply #17 on: August 06, 2008, 08:46:33 am »
My name is Stevek and had a 4cm x 2.8cm x 3.1cm right side AN removed Translab on 6/9/08.
...
Feels good to get the first post off my chest.  This forum is really great.

I imagine it feels pretty good to get an AN that big removed as well. Welcome to forum. :)

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.

Pooter

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Re: Newbie from NC
« Reply #18 on: August 06, 2008, 11:05:59 am »
Not to hijack, but welcome Stevek to the forum!  We're glad your hear and doing well after surgery!  Don't be a stranger!  :)

Brian
Diagnosed 4/10/08 - 3cm Right AN
12hr retrosig 5/8/08 w/Drs Vrabec and Trask in Houston, Tx
Some facial paralysis post-op but most movement is back, some tinitus.  SSD on right.
Story documented here:  http://briansbrainbooger.blogspot.com/

"I must be having fun all wrong!"  - Roger Creager

JulieW4

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Re: Newbie from NC
« Reply #19 on: August 06, 2008, 11:13:56 am »
I just wanted to endorse Kate's site also.  I printed off a lot of the info and took it to my doctor.  I was very grateful to have a starting point of questions and info.  Every newbie needs to know about your site.

Julie
2.7mm X 3.7mm AN
misdiagnosed for 13 years
complete hearing loss on right side
Had Translab surgery on June 30th, released from hospital 48 hours after completion of 5 hours of surgery
BAHA abutment surgery on Oct. 31st, received processor on Dec. 4th

fbarbera

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Re: Newbie from NC
« Reply #20 on: August 06, 2008, 01:17:38 pm »
Hi Lisa, I can certainly relate to the stress you are feeling.  I was diagnosed about a year ago and spent the next three or four weeks researching, thinking and talking about my AN on a non-stop basis.  Not so fun, but an essential part of the process.  My AN is 2.6 cm or so, and I elected to go with Cyberknife.  I've described my decision making process in detail in the website below.  I never considered Endoscopic Surgery, but I checked out the SBI website and it does look interesting and worth looking into.  I would find out what you can about your options and then set up consults with neurosurgeons who specialize in each.  One unusual thing you'll find about the AN universe is that there's considerable debate among neurosurgeons about how best to treat smaller ANs like yours.  They tend to be on "teams", with microsurgeons supporting surgery and radiosurgeons supports radiation, etc.   So it's good to get different perspectives when researching the options.
Good luck and keep us posted.
Francesco
« Last Edit: August 06, 2008, 06:10:13 pm by fbarbera »

LADavid

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Re: Newbie from NC
« Reply #21 on: August 06, 2008, 02:14:22 pm »
There's not much I can add to the extensive information on this thread except to say -- welcome Lisa and Steve.  You found a good place to be both pre-op and post-op.  And Stevek -- I was born in Allegheny General -- many years ago.

David
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

leapyrtwins

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Re: Newbie from NC
« Reply #22 on: August 06, 2008, 05:34:55 pm »
Welcome stevek-

thanks for sharing your wonderful experience at Allegheny General and with Drs. Hillman, Abdel-Aziz, and Chen.  This will be very valuable information for others.

I'm also glad you find the ANA website and this forum to be such great resources. 

Jan

Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

marymomof3

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Re: Newbie from NC
« Reply #23 on: August 06, 2008, 07:36:01 pm »
Hi Lisa - I'm definitely going to copy what someone previously said - take a breath....  The diagnosis is definitely difficult to digest, but you'll find great support at this forum.  Everyone here helped me tremendously with my research, surgery and recovery.  I was diagnosed in January with a 1.8 cm and had it surgically removed in March.  I just sent you a PM - give me a call and we'll chat.
Mary
Diagnosed Jan 21, 2008 w/1.8CM AN on left side.  Had is removed on March 19th at NYU.  And I am super grateful for such wonderful doctors!!

Captain Deb

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Re: Newbie from NC
« Reply #24 on: August 26, 2008, 03:16:01 pm »
Well, Hey Y'all!
I'm in Boone, Lisa!  Yes House is great, but there is a good female neurotologist at Duke, too.  Be sure and research radiosurgery options as your size tumor is well within size range for a good outcome for it.  I went to the ANA symposium in July 07 and it seems more and more docs are leaning towards radiosurgery for treatment for smaller tumors. Do your homework and be sure to take advantage of the literature available trough the ANA--just click on the logo in the upper right of this page.

Good luck,

Capt Deb
"You only have two choices, having fun or freaking out"-Jimmy Buffett
50-ish with a 1x.7x.8cm.AN
Mid-fossa HEI, Jan 03 Friedman & Hitselberger
Chronic post-op headaches
Captain & Designated Driver of the PBW

AMD

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Re: Newbie from NC
« Reply #25 on: September 02, 2008, 10:29:11 pm »
Hi Lisa,

Welcome to this site!  It is filled with all sorts of great information and great people.  Like everyone else said, relax and take time to investigate.  There are wonderful surgeons and radiation docs all over.  I used Google for lots of things.  You can look up docs on there too.  I was referred to 2 great neurotologists in my own state from my local ENT.  Both of these docs trained at House in LA.  A lot of docs trained there and are a working all over the US.  Don't be afraid to call anywhere and ask anything.  We all will be here to support any decisions you make.  Good luck and let us know how things are going!!!

Amy D. :)
Left side 1.7 cm AN diagnosed 7/30/08
Misdiagnosed for 8 + years
Surgery, Sub-occipital, 11/17/2008 at Indiana University Hospital
Left SSD
Tumor much larger than expected. Facial nerves intact, but had RARE swelling resulting in brachial plexus injury and tracheostomy after surgery.

solecleansing

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Re: Newbie from NC
« Reply #26 on: September 05, 2008, 06:20:10 pm »
Hi Lisa,

I lived and had my surgery in Raleigh last November.  My surgery was done by Dr. Elveen's partner  -  Dr. Calhoun Cunningham.  I can't say enough wonderful things about him and his staff at Carolina Ear.  Takanori Fukushima, M.D., Neurosurgeon assisted with my surgery.  Dr. Fukushima  travels the world doing AN surgeries.  I felt very confident with the team.  I only saw Dr. Elveen when I was in the hospital and I was also impressed with him. 

Wish you the best.

Judy
« Last Edit: September 06, 2008, 08:38:01 am by Jim Scott »

Sue

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Re: Newbie from NC
« Reply #27 on: September 29, 2008, 06:24:55 pm »
Extending my welcome to the Newbies, also!  After finding out your diagnosis, it's nice to have waiting arms to bring you into the fold, so to speak.  It's not a good feeling to think you are all alone in this journey.  We will walk the walk, and talk the talk right along side of you.  And if you can find Nancy Drew's posts, you will see that she comes by her name because she attacked her diagnosis with the tenacity of a true detective.  If you can think of a question, Nancy Drew probably asked it already!  You can search for her posts and see if her questions and answers help you with your detective work also. 

Hoping your treatment and eventual recovery is a piece of cake!  Chocolate cake.  Or pick your favorite flavor. It's all good.  :D ;)

Sue in Vancouver, WA USA
Sue in Vancouver, USA
 2 cm Left side
Diagnosed 3/13/06 GK 4-18-06
Gamma Knife Center of Oregon
My Blog, where you can read my story.


http://suecollins-blog.blogspot.com/2010/02/hello.html


The only good tumor be a dead tumor. Which it's becoming. Necrosis!
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