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Author Topic: Six month update  (Read 5385 times)

wendysig

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Six month update
« on: January 25, 2009, 07:48:09 pm »
Hi all,

I just realized a few minutes ago that six months ago today I had my translab surgery -- time flies when you're having fun I guess.  ;D   I got off to a little bit of a rocky start after my surgery with my leaky incision (that was a fun two months) and taking Debbi's lead, you all made me Queen of the Icky Heads!  All in all, I have been very fortunate and count my blessings on a pretty regular basis. Although my balance has improved greatly, there are times I still get that wonky headed feeling and  the mall and crowds will never be the same for me, no matter what I do I still feel slightly disoriented in either circumstance, so I guess I will probably have to live with that and the fact that walking in a straight line also seems impossible  -- certainly, I could have much worse problems.  My biggest remaining problems  are being SSD and my lack of directionality.   I actually find them equally frustrating but hope when I get my BAHA processor in April that will be a big help.

I know the day I found this forum -- the day after my diagnosis (April 10) -- was one of  the luckiest days of my life.   I probably should have bought a lottery ticket that day.  You have all been so wonderful and supportive that I will be eternally grateful.  I can safely say that I could never have gotten through the past few months and kept my sanity (or what's left of it  ;D) without you, my wonderful extended family.   You all supported me, lent me your virtual shoulders to cry on, propped me up when I was feeling down or frightened and gave me invaluable advice, shared your stories and on occasion, your zaniness and hilarity.   "Thank you" somehow doesn't seem like enough, but thank you. 

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!

sgerrard

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Re: Six month update
« Reply #1 on: January 25, 2009, 07:52:34 pm »
Quote from: wendysig on January 25, 2009, 07:48:09 pm
"Thank you" somehow doesn't seem like enough, but thank you. 

Thank you is plenty, Wendy, it's been a pleasure having you here the last six months. I hope you stick around another six!

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.

Mickey

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Re: Six month update
« Reply #2 on: January 25, 2009, 08:12:39 pm »
Way to go Wendy!  6 mos. is a relitively short time. It sounds to me like you`ll be getting better and better especially with the baha coming soon. Best Wishes, Mickey
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Kaybo

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Re: Six month update
« Reply #3 on: January 25, 2009, 08:21:17 pm »
WHOO-HOO!!

It just keeps getting better!   ;D

K
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Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

leapyrtwins

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Re: Six month update
« Reply #4 on: January 26, 2009, 12:09:59 am »
Congratulations, Wendy.  Half-way through year one - a great milestone  ;D

Jan
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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

MAlegant

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Re: Six month update
« Reply #5 on: January 26, 2009, 10:06:57 am »
Happy 6 months Wendy!  And you give as much as you've received so it all evens out in the end.
Best,
Marci

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3cmx4cm trigeminal neuroma, involved all the facial nerves, dx July 8, 2008, tx July 22, 2008, home on July 24, 2008. Amazing care at University Hospitals in Cleveland.

Pooter

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Re: Six month update
« Reply #6 on: January 26, 2009, 11:09:14 am »
WOW!  6 months already!  Here's to the past 6 and here's another for the next 6!  Congratulations!  I know personally how good it feels to hit milestones like that..

Regards,
Brian
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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

wendysig

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Re: Six month update
« Reply #7 on: January 26, 2009, 12:31:58 pm »
Hi all,

Thanks for all your good wishes!  It is hard to believe it has already been 6 months since my surgeyr, it seems almost impossible that it's been that long.   I think the fact that we cheer each other on even after the worst has passed and we go back to trying to live our normal lives, continues to make this journey a lot easier.  I have tried hard to embrace and laugh, when possible, at the changes that have come with the AN experience and you have all played  a major part in making that possible.  I have also found that in helping those of you I have helped, I have also helped myself.  You are all so very special to me and I hope to be around to lend a shoulder or hand and share in the crazyness for a long time to come!

Best wishes to all,
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: Six month update
« Reply #8 on: January 26, 2009, 01:45:23 pm »
onward and upward, Wendy! :)  continued wishes of wellness! :)

P
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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"

Syl

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Re: Six month update
« Reply #9 on: January 26, 2009, 01:57:28 pm »
Wendy:

CONRATS!! :) on your six month milestone. You're so right about this group being special, and you are part of it.

Syl
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1.5cm AN rt side; Retrosig June 16, 2008; preserved facial and hearing nerves;
FINALLY FREE OF CHRONIC HEADACHES 4.5 years post-op!!!!!!!
Drs. Kato, Blumenfeld, and Cheung.

Captain Deb

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Re: Six month update
« Reply #10 on: January 26, 2009, 02:32:59 pm »
Only the best of us gets to be Ickyheads, wench! Never forget that progress continues to be made even years afterwards, so keep on truckin, mama!

Capt Deb
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"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

jerseygirl

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Re: Six month update
« Reply #11 on: January 26, 2009, 06:13:57 pm »
Wendy,

It really is hard to believe that it has been 6 months already! Congratulations! ;D

               Eve

P.S. I can't wait to eat your cake. You said it might be possible for the next get together to bake a cake in the form of AN on the MRI. So many people volunteered to destroy the tumor with their teeth! I have serious competition!
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Right side AN (6x3x3 cm) removed in 1988 by Drs. Benjamin & Cohen at NYU (16 hrs); nerves involved III - XII.
Regrowth at the brainstem 2.5 cm removed by Dr.Shahinian in 4 hrs at SBI (hopefully, this time forever); nerves involved IV - X with VIII missing. No facial or swallowing issues.

Jim Scott

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Re: Six month update
« Reply #12 on: January 27, 2009, 10:31:21 am »
Wendy:

Congratulations on your 6-month anniversary!  Your contributions to the forums ('paying it forward') are most appreciated and all the 'thanks' necessary. 

Jim
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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.

Debbi

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Re: Six month update
« Reply #13 on: January 27, 2009, 03:46:23 pm »
Wow - can't believe it's already been six months!  Holy cow. 

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

NL

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Re: Six month update
« Reply #14 on: January 27, 2009, 10:44:46 pm »
Wendy,

You have given SO much back to others on this forum over those six months! So congratulations...and thank YOU!  :)

Nancy
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1.6 cm left AN diagnosed Oct. '07
1.9 cm on 2nd MRI, May '08
Retrosigmoid surgery at House Clinic/St. Vincent's on 8/6/08
(no post-op dizziness, nausea, facial or balance issues)
Thankful for a fantastic team of doctors - Dr. Rick Friedman, Dr. Marc Schwartz, & Dr. Michael Stefan
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