Author Topic: AN 2.5cm+ in New Zealand ... surgery Jan 25 2013 CSF leaking out ear  (Read 22746 times)

millie

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Re: Diagnosed with AN 2.5cm+ in New Zealand ... surgery BOOKED
« Reply #15 on: January 04, 2013, 07:52:04 pm »
Hang in there, Sam...I had trans-lab Oct. 17th and am still recovering.  I am 65-you are young and will heal more quickly.  I am slowly adjusting to the complete hearing loss left side-I had 40 percent before the surgery.  There are hearing devices to look at when the doctor says it's time.
Let your family support you all they can.  This is a stressful time, and the other failings of every day life do not help.
Choose your doctors as best you can and then have faith.
Including you in my prayers.
Mil

Sam-NewZealand

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Re: Diagnosed with AN 2.5cm+ in New Zealand ... surgery BOOKED
« Reply #16 on: January 04, 2013, 08:50:17 pm »
Thanks Millie,

pleased to hear your surgery went well :)  i wish my family were here to support me better - like everyone though really they are all there to listen and talk but when it comes to actually being a full time mum with kids and house hold chores its down to me really - i mean as much as people say let me know if i can help in any way, i'm hardly going to ask them to scrub my toilet am i .... of stop my kids fighting yet i'm to tired and over emotional to be wasting energy on toilets!

still all support is very appreciated and welcomed.  I'm going to start writing on my blog again, another way to keep my thoughts together and acknowledge the journey i'm on :)

x
Sam
MRI on 16 Nov 2012 diagnosed - 29 years old!
Left AN 2.7 x 2.6 x 2.4 cm - pressing on brainstem & sensory nerve for face, full/numb ear feeling, constant tinnitus & major hearing loss in Left ear
7 hr AN surgery 25 Jan 2013
2 hr CSF Leak surgery 16 Feb
SSD Left, dry eye & slight Facial Nerve Damamge

Sam-NewZealand

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Re: Diagnosed with AN 2.5cm+ in New Zealand ... surgery 25Jan2013
« Reply #17 on: January 17, 2013, 12:37:03 am »
so count down is on! .... still emotional, having tears more often then not.  Mostly over the loss of my hearing but after much investigation i know translab is the best approach and i'd rather lose the hearing over having my facial nerve greatly affected - even though we still haven't be told how affected by the tumour that is.  Hearing devices after surgery don't seem possible? .. only a transmitter no cochlear etc available here.

so on the 23rd hubby and i head away for a night & to break the 5 hour drive to surgery, i'll be admitted the night before and we will be getting started at about 6am from what I gather. .... time toe seriously start looking at the other side.

We also got some family photos done yesterday:  even though i'm so tired they do look good - i love my family.

MRI on 16 Nov 2012 diagnosed - 29 years old!
Left AN 2.7 x 2.6 x 2.4 cm - pressing on brainstem & sensory nerve for face, full/numb ear feeling, constant tinnitus & major hearing loss in Left ear
7 hr AN surgery 25 Jan 2013
2 hr CSF Leak surgery 16 Feb
SSD Left, dry eye & slight Facial Nerve Damamge

millie

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Re: Diagnosed with AN 2.5cm+ in New Zealand ... surgery BOOKED
« Reply #18 on: January 17, 2013, 03:37:48 pm »
Stay strong and brave for you and your beautiful family, Sam!  You can do this.  REcovery will take time, it varies for all of us, but you will get better.
Praying...Millie

Sam-NewZealand

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Re: Diagnosed with AN 2.5cm+ in New Zealand ... surgery BOOKED
« Reply #19 on: January 17, 2013, 09:19:20 pm »
Thanks Millie :)
MRI on 16 Nov 2012 diagnosed - 29 years old!
Left AN 2.7 x 2.6 x 2.4 cm - pressing on brainstem & sensory nerve for face, full/numb ear feeling, constant tinnitus & major hearing loss in Left ear
7 hr AN surgery 25 Jan 2013
2 hr CSF Leak surgery 16 Feb
SSD Left, dry eye & slight Facial Nerve Damamge

Sam-NewZealand

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Re: Diagnosed with AN 2.5cm+ in New Zealand ... surgery Jan 25 2013
« Reply #20 on: January 23, 2013, 01:27:24 pm »
Today is admittance day to Ascot Auckland .... what to do for the 8 hours until admittance.  Translab Operation set to start first thing in the morning and last for 6 - 8 hours. Looking forward to operation removal so i can get onto recovery, fear and nervousness seems to be ok so far. So glad for hubby to be here for the whole journey.  Hoping i can get him to add an update after surgery . Till then xx
MRI on 16 Nov 2012 diagnosed - 29 years old!
Left AN 2.7 x 2.6 x 2.4 cm - pressing on brainstem & sensory nerve for face, full/numb ear feeling, constant tinnitus & major hearing loss in Left ear
7 hr AN surgery 25 Jan 2013
2 hr CSF Leak surgery 16 Feb
SSD Left, dry eye & slight Facial Nerve Damamge

Jim Scott

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Re: Diagnosed with AN 2.5cm+ in New Zealand ... surgery Jan 25 2013
« Reply #21 on: January 23, 2013, 01:41:20 pm »
Sam ~

My thoughts and prayers go out to you as you approach your AN surgery. I'm sure you'll do well and we look forward to an update whenever that becomes possible.

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.

PaulW

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Re: Diagnosed with AN 2.5cm+ in New Zealand ... surgery Jan 25 2013
« Reply #22 on: January 24, 2013, 02:15:03 pm »
9:15 am 25 Jan 2013 in Aukland
Surgery has probably started
My thoughts are with you.
Hope to hear good things soon.

Lots of positive vibes and wishes from the other side of the ditch....

(for those non Australians or New Zealanders. Other side of the ditch = Australia)
« Last Edit: January 24, 2013, 02:23:29 pm by PaulW »
10x5x5mm AN
Sudden Partial hearing loss 5/28/10
Diagnosed 7/4/10
CK 7/27/10
2/21/11 Swelling 13x6x7mm
10/16/11 Hearing returned, balance improved. Feel totally back to normal most days
3/1/12 Sudden Hearing loss, steroids, hearing back.
9/16/13 Life is just like before my AN. ALL Good!

ewchisek

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Re: Diagnosed with AN 2.5cm+ in New Zealand ... surgery Jan 25 2013
« Reply #23 on: January 24, 2013, 03:18:27 pm »
You are probably halfway thru the surgery...praying for you.

millie

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Re: Diagnosed with AN 2.5cm+ in New Zealand ... surgery Jan 25 2013
« Reply #24 on: January 24, 2013, 04:38:25 pm »
We are praying for you. 

MDemisay

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Re: Diagnosed with AN 2.5cm+ in New Zealand ... surgery Jan 25 2013
« Reply #25 on: January 25, 2013, 12:12:59 pm »
Sam,

Praying for you too! Relax it's in HIS hands now, rest assured you've picked well! Here's to a speedy recovery!

Mike
1974 - Dr. Michelson  Colombia Presbyterian removal of 3 Arterio Venous Malformations
2004- Dr. Sisti  NY Presbyterian subtotal removal of 3.1 cm AN,
2012 - June 11th Dr. Sisti Gamma Knife (easy-breasily done)"DEAD IRV" play taps!
Research, research, research then decide and trust in God's Hands!

Sam-NewZealand

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Re: Diagnosed with AN 2.5cm+ in New Zealand ... surgery Jan 25 2013
« Reply #26 on: January 27, 2013, 08:54:39 pm »
Day 3 postie!!!
Doing well all needles and head bandage off, facial nerve was stretched over tumour but so far still has movemnet in it. Facial sensory nerve brused too resulting in numb tounge feeling that comes and goes apart from eye drops contnuing i feel rather good. Dr said its on of the tricyiest he has seen with both soft and hard patches in it.  Thinking i willbe out of hospital tomorrow or definately the next. Missing my girls but know this is the best place to be. Thank you for support i am so pleased to be past the surgery now.
MRI on 16 Nov 2012 diagnosed - 29 years old!
Left AN 2.7 x 2.6 x 2.4 cm - pressing on brainstem & sensory nerve for face, full/numb ear feeling, constant tinnitus & major hearing loss in Left ear
7 hr AN surgery 25 Jan 2013
2 hr CSF Leak surgery 16 Feb
SSD Left, dry eye & slight Facial Nerve Damamge

Tumbleweed

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Re: Diagnosed with AN 2.5cm+ in New Zealand ... surgery Jan 25 2013
« Reply #27 on: January 27, 2013, 09:00:44 pm »
Congratulations, Sam! We're all hoping you have a fast recovery.

Best wishes,
TW
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

Jim Scott

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Re: Diagnosed with AN 2.5cm+ in New Zealand ... surgery Jan 25 2013
« Reply #28 on: January 28, 2013, 02:16:13 pm »
Sam ~

Thanks so much for the post-surgical update.  It would appear that you're progressing nicely, all things considered.  We're praying for your recovery to be both swift and complete!  :)

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.

millie

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Re: Diagnosed with AN 2.5cm+ in New Zealand ... surgery Jan 25 2013
« Reply #29 on: January 28, 2013, 07:36:23 pm »
You sound wonderful!  The surgery seems to have gone very well.  I too have some  numbness or a burned  sensation on the left side of my  tongue.
I hope you are on your feet soon.  Take it slowly and steadily.  Praying for you, Sam
Mil