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Author Topic: regrowth???? so lost right now  (Read 13740 times)

sgerrard

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Re: regrowth???? so lost right now
« Reply #15 on: November 18, 2009, 11:45:53 pm »
Yikes. No rest for the weary, I guess. I bet it turns out not to be a big deal, Jo, but if it is, it can be fixed. Just one more step to go through.

I know just the thing to cheer you up - I will send you a hat. :)

Steve
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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.

wendysig

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Re: regrowth???? so lost right now
« Reply #16 on: November 18, 2009, 11:55:40 pm »
Jo,

I am so very sorry to hear you have had a regrowth and a rapid one at that from the looks of it.  Please keep us posted and know that you are in our prayers.

Wendy
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1.3 cm at time of diagnosis -  April 9, 2008
2 cm at time of surgery
SSD right side translabyrinthine July 25, 2008
Mt. Sinai Hospital, New York, NY
Extremely grateful for the wonderful Dr. Choe & Dr. Chen
BAHA surgery 1/5/09
Doing great!

ppearl214

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Re: regrowth???? so lost right now
« Reply #17 on: November 19, 2009, 06:24:24 am »
*runs in.... gives Jo MASSIVE Bear-Hugglez for wellness..........*  :-*  :-*  :-*

Phyl
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"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Keri

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Re: regrowth???? so lost right now
« Reply #18 on: November 19, 2009, 03:05:43 pm »
I'm so sorry too, Jo, and am hoping and praying that it really isn't regrowth.
I hope your grandbaby is much better very soon too.
Keri
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1.5 left side; hearing loss; translab scheduled for 1/29/09 at Univ of MD at Baltimore
My head feels weird!!

Sobes

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Re: regrowth???? so lost right now
« Reply #19 on: November 19, 2009, 04:08:00 pm »
Oh Jo, I am so sorry to hear this news :( Please keep us posted and let's hope it is a misread...or some other mistake ??? I am sending you a big hug and many, many prayers from WI!

Bren~
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Small AN, left side, Oct. 22 2009
Surgery Dec. 22 @ UW Madison (wonderful doctors)
SSD (left side)

moe

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Re: regrowth???? so lost right now
« Reply #20 on: November 19, 2009, 07:48:56 pm »
Yikes, I also had to read the thread 2-3 times. This is NOT fair! Let's pray it was some typo or something, otherwise, go with what you feel is best.
Lots of good advice. Keep us posted, and hang in there.
Hope your darling grandson is doing better too.
Maureen
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06/06-Translab 3x2.5 vascular L AN- MAMC,Tacoma WA
Facial nerve cut,reanastomosed.Tarsorrhaphy
11/06. Gold weight,tarsorrhaphy reversed
01/08- nerve transposition-(12/7) UW Hospital, Seattle
5/13/10 Gracilis flap surgery UW for smile restoration :)
11/10/10 BAHA 2/23/11 brow lift/canthoplasty

mimoore

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Re: regrowth???? so lost right now
« Reply #21 on: November 19, 2009, 08:01:43 pm »
My heart sank Jo. It is our worst nightmare-big cyber hugs for you!
Keep us posted - waiting for the 30th will be hard but we are here for you.
Maybe there is hope it is a mistake and it really is scar tissue?
Michelle  :-*
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Retrosigmond surgery on June 4th, 2008 for an AN. 100% hearing loss and facial paralysis (was not prepared for facial paralysis). Size: 2.3 cm, 2.1 cm, 1.8 cm. some tumour remains along facial nerve. Pray for no regrowth. Misdiagnosed for 10 yrs.

tenai98

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Re: regrowth???? so lost right now
« Reply #22 on: November 21, 2009, 07:31:06 pm »
Hi Donnalynn
thanks for inquiring...I am fine...if it is regrowth and not scar tissue(fingers crossed) I will be looking into radiation.  Have been reading up on some old post about GK, CK and so on....still very confusing but given me some info for do next monday...
I'm not worried about it as 1) its benign 2) its treatable 3) i'm alive.
I know CK is more for preserving hearing. Mine is gone...as well as my balance nerve on that side....
Linac is used in Ottawa but its confusing reading about how linac is the name of machine??? That GK is a form of linac...like I said  at this point its all confusing...I will seek out some answers from members here after I consult with the neurosurgeon on Nov. 30th.
I refuse to let this monster get me down...I have my two trips coming up...month of jan in Mexico and then month of march in florida....and that is what I will focus on...
Jo
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14mmX11mmX11mm left ear
TRANSLAB 04/07/09 2cms at time of surgery
Dr. Benoit and Schramm, Ottawa Civic Campus
SSD ,some facial numbness
Baha surgery sept 22/09
residual tumor 13mmX7mmX8mm
2016 new growth.  25mmX21mmX22mm
cyberknife on June 7

msmaggie

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Re: regrowth???? so lost right now
« Reply #23 on: November 21, 2009, 07:42:49 pm »
What a bummer! That is not what we want to hear, and I am with the rest in hoping that this just a mistake of some kind. You sound like you are doing okay in with all of this so far.  I have my first MRI coming up in a couple of weeks, and I know that I could very well be facing the same kind of news.  I am going to emulate your attitude toward all of this!

Priscilla
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Diagnosed  left AN 8/07/08, 1.9 CM
Surgery 12/10/08 at Methodist Hospital w/Vrabec and Trask for what turned out to be a cpa meningioma.

Kathy M

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Re: regrowth???? so lost right now
« Reply #24 on: November 21, 2009, 08:43:58 pm »
JO,

I admire your spirit so much - it is the news that no one wants to hear and I share everyone' s hope that it is not what it seems.  I am looking forward to hearing what you find out - your doctor can tell you best and you're seeing him very soon.  Til then, I know you will do what you need for you - research, positive energy, and love to/from your family & friends.  Sending you the best of wishes and good vibes from Ohio.

Kathy
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AN diagnosed 11/14/08, 3+cm, Retrosigmoid 1/13/09, Univ. Hosp., Cincinnati, Drs. Tew and Pensak
no facial nerve or eye issues!
3 more surgeries related to staph infections & osteomylitis over next 13 months.  New diagnosis of breast cancer.  Treatment completed 08/27/10.  Moving on!!!

yardtick

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Re: regrowth???? so lost right now
« Reply #25 on: November 21, 2009, 09:55:41 pm »
Jo,

I've been reading and not commenting, but I am very much thinking of you!

Anne Marie  :-* :-*
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Sept 8/06 Translab
Post surgical headaches, hemifacial spasms and a scar neuroma. 
Our we having fun YET!!! 
Watch & Wait for more fun & games

Debbi

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Re: regrowth???? so lost right now
« Reply #26 on: November 23, 2009, 08:04:49 am »
Yikes!  I am keeping fingers and toes crossed that there is some error or confusion in the MRI report.  Sending hugs your way!

Debbi
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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

cyrmom2

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Re: regrowth???? so lost right now
« Reply #27 on: November 23, 2009, 09:21:49 am »
Jo, I'm praying that your November 30 appointment goes well and that you don't need surgery or radiation. Hope your grandson is feeling much better!

More good wishes from Ohio!
Cyndi
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diagnosed 7-27-09 4 cm CPA
12 hr translab 8-25-09
Dr Chicooca & Dr Welling at OSU/The James
sliver of tumor remains on brain stem
left SSD & facial paralysis (was 6/6, 2-3/6 at 9 weeks, 1/6 within 4 months) 6 month MRI on 3-17-10.

epc1970

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Re: regrowth???? so lost right now
« Reply #28 on: November 23, 2009, 05:53:23 pm »
Jo
I just wanted to say that I so admire you spirit and attitude. I hope that if I am ever faced with the same situation that I will have the same spunk and determination. Please keep us posted on what happens from here and I am sending prayers your way.
Erin
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anissa

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Re: regrowth???? so lost right now
« Reply #29 on: November 24, 2009, 12:14:52 am »
Jo, I am so sorry to hear about the regrowth!  I'll be looking for your update post after your appt next week.  My surgery was only a week before yours and they left a strand also for the same reason.  Did you say 1.6mm or cm?  Thinking of you and prayers for peace for you.  How is your grandbaby?
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Anissa
2/11/09 Diagnosed AN 2.1cm
2/26/09 Consult with Dr. Clough Shelton, U of Utah
4/1/09 Translab with Shelton & Couldwell
--little teensy bit of tumor or cells on facial nerve, stuck! No facial weakness, Rt side SSD
4/8/10 1-yr MRI, "Looks great!"
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