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Author Topic: Update on Liz from Washington  (Read 25224 times)

sgerrard

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Re: Update on Liz from Washington
« Reply #15 on: March 27, 2009, 08:48:20 pm »
Argh, the CSF leak strikes again. Oh well, it will probably clear up over the weekend.

You are right, Annalisa, the few days after surgery can be hard for those who wait, as well as for the patient. Both of you take care,

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.

moe

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Re: Update on Liz from Washington
« Reply #16 on: March 27, 2009, 09:35:24 pm »
Sorry to hear about the CSF leak. She is in great hands there at Madigan.  I was there. They are being extra cautious.
 Better to be safe and drain what fluid is there. Make sure she gets her pain med-preferably the IV morphine stuff if she can tolerate it.
Hoping to meet Liz after all this ordeal is over.
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

bdsgurl

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Re: Update on Liz from Washington
« Reply #17 on: March 28, 2009, 02:17:18 pm »
unfortunately, more bad news from Lizs husband...

he said yesterday they told them that Liz will have to go back in for another surgery on tuesday. they said when looking at the MRI, there was a significant amount of tumor left behind right near the brain stem, and they will have to operate again to take it out. Of course this means a longer hospital stay and more time away from her babies, which she is really sad about. I dont know any more detail because as you can imagine, her husband is spending all his time with her in ICU and doesnt have much time for updating me (bless his heart too!) I know this isnt how she imagined this turning out and it makes me sad for her. I wish things had turned out more simply, all we can do is keep praying for her. Has anyone else had this type of complication after surgery where they decided they needed to go back in? Im so worried for her after being in surgery for almost 16 hours just a few days prior, how will her body deal with yet another long surgery?

please keep her and her family in your prayers as often as you can!!
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sgerrard

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Re: Update on Liz from Washington
« Reply #18 on: March 28, 2009, 02:45:35 pm »
Quote from: bdsgurl on March 28, 2009, 02:17:18 pm
please keep her and her family in your prayers as often as you can!!

You bet.

I read back over Liz's posts, and realized that the CSF build up started before surgery, so that was less of a surprise than I first thought. I also realized that her tumor was 4.5 cm, which is quite a large one.

This latest development is not common, and certainly serious enough. My sympathies for Liz, this is a lot to endure, but she will make it. I think the second surgery should go quicker, much of the ground work is already done. I have heard of reopening surgeries for cleaning up infection, and that seems to go okay. Even though this is more serious than that, I think there is every reason to remain optimistic that it will get done. People have made it through strokes and other serious complications during their surgeries.

Please relay to Liz and her husband our continued support for them, they will need to stay strong through this. We are pulling for her...

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.

Jim Scott

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Re: Update on Liz from Washington
« Reply #19 on: March 28, 2009, 04:29:29 pm »
bdsgurl ~

Thanks for the update on Liz, even if things are not as positive as we would all like.  We need to know the reality.

Immediate second surgeries on remaining ANs are not common but it does happen, and better the doctors excise this bugger now than to see Liz have to go back in the hospital weeks or months later, again disrupting her life.  This is certainly not the smooth operation Liz and everyone else had hoped for, but with all the support and prayers for her (including mine), our Liz should pull through this, O.K.

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.

EJTampa

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Re: Update on Liz from Washington
« Reply #20 on: March 28, 2009, 08:26:45 pm »
I agree with Jim.  Better to take care of the residual tumor now than to go through the entire healing process twice.  I know if I were given the choice, I'd want it out now.
 
I will continue to pray for Liz, and hope she knows how many people here are pulling for her on this latest setback.
 
Ernie
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-1.3 X 0.8 cm AN in the right cerebellopontine angle extending into the internal auditory canal.
-Retrosigmoid Surgery with Dr. Bartels and Dr. Danner at Tampa General 3/5/2009.
-Had to cut hearing nerve to get "sticky" tumor, so SSD right side.

Keri

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Re: Update on Liz from Washington
« Reply #21 on: March 28, 2009, 09:07:16 pm »
I'm also sad to hear about Liz. Please tell her and her husband that many of us are praying for her and pulling for her.

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!!

Rich56

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Re: Update on Liz from Washington
« Reply #22 on: March 28, 2009, 10:40:57 pm »
Praying for Liz as she fights yet another battle,

Rich & Scarlett
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SML (Scarlett's) other half, she had - 1.5 cm x 2.5 cm Cystic AN - Right side
Retrosigmoid on 3/18/09 at MGH in Boston, MA. Dr. Barker & Dr. Lee of MGH/MEEI
no facial issues, SSD right side, balance issues to work on.
The AN Calendar is here: http://www.my.calendars.net/AN_Treatments

NancyMc

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Re: Update on Liz from Washington
« Reply #23 on: March 29, 2009, 08:29:28 am »
Liz,
You were the last one I thought of last night and the first this morning. 
Deep breath. 
Soon it will all be behind you.
Lots of love to your friends and family,
Nancy
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Watch and Wait since 9/19/01
Increased from 1.1 x 1.9 to 1.9 x 1.9 cm as of 10/27/08
Right SSD, tinnitus, compensating balance
Dr. McKenna at Mass Eye and Ear and Dr. Barker at MGH
Translab April 8, 9 hours, 18 mm Tumor all gone SSD some facial weakness

yardtick

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Re: Update on Liz from Washington
« Reply #24 on: March 29, 2009, 11:20:58 am »
Good luck Liz.  Do not worry about your children.  From one mother to another, you know they are in good hands.  I know my advice is easier said than done.  Get that sucker out of your head and be well.

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

MAlegant

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Re: Update on Liz from Washington
« Reply #25 on: March 29, 2009, 01:54:37 pm »
Liz,
You will come through this fine, hang in there, much love and hope,
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.

moe

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Re: Update on Liz from Washington
« Reply #26 on: March 29, 2009, 02:09:18 pm »
Hang in there, Liz :(
Not what you planned, but at least they can get what needs to be done, DONE.
Wow, the length of your first surgery was impressive. I would imagine they just had to stop after so many hours.
Things will be OK
I'm praying for you and your husband/kids 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

Kaybo

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Re: Update on Liz from Washington
« Reply #27 on: March 29, 2009, 02:29:19 pm »
Linz~
You are in my prayers!  Hang in there better to get it all over with at once!

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
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T3-3/08
Great life!

Syl

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Re: Update on Liz from Washington
« Reply #28 on: March 29, 2009, 02:38:55 pm »
Oh, dear. They have to open Liz up again? That's unfortunate, but I'll be praying that they get it all this next time and that she comes out of this ok.

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.

nancyann

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Re: Update on Liz from Washington
« Reply #29 on: March 29, 2009, 03:02:19 pm »
My heart goes out to Liz, her husband & children.   
Keep a peaceful heart through this trying time.
My thoughts & prayers for a safe & successful surgery are with you all.   
Always good thoughts,   Nancy
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2.2cm length x 1.7cm width x 1.3cm  depth
retrosigmoid 6/19/06
Gold weight 7/19/06, removed 3/07
lateral tarsel strip X3
T3 procedure 11/20/07
1.6 Gm platinum weight 7/10/08
lateral canthal sling 11/14/08
Jones tube insert right inner eye 2/27/09
2.4 Gm. Platinum chain 2017
right facial paralysis
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