Author Topic: Feeling a bit lost  (Read 1727 times)

kiwi

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Feeling a bit lost
« on: January 20, 2010, 02:32:50 am »
Hi All

Just wanted to vent a bit.....

My surgery date has been changed from 2nd Feb to the 16th.  I know it only 2 weeks but I was mentally prepared and had everything organised  - I have 2 dogs, 2 cats and a horse to organise babysitters for.  I feel a bit lost now as I just wanted to get it over with and start recovering.  Im sick of being dependant on everyone as I cant walk now and definately cant drive, not to mention every other problem that an AN does to you. Im sorry to moan as I know we all suffer in one way or another but I feel better now just getting it off my chest.

Thanks for listening
Jacqui
3.6cm AN Left side diagnosed Dec 09.
Translab surgery 16th March 2010
Left SSD, Facial Paralysis
CSF Leak surgery 11th May 2010

Lynn Mc

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Re: Feeling a bit lost
« Reply #1 on: January 20, 2010, 05:48:07 am »
Good Morning Jacqui

Oh Jacqui my heart goes out to you.  I don't understand how they can just shuffle us around like that.  It really is not fair to you.  I was in a similar situation as my surgery was postponed from the beginning of December to January 20th, to January 22nd (this Friday).  After the December delay, the 2 day delay was the end of the world for me!!!  Like you I have 2 dogs, cat and 3 horses that I had all the  plans in place.  I also have a Dad with Alzheimer's & my husband who is disabled!!  All my support just shifted their time to accommodate me.  I felt horrible as I was READY to get this thing OUT, and I imposed MORE on my friends and family.  I did find out it is not the end of the world and all of my friends and family were more than willing to support me no matter when this happens.  I really think it is more that we are so mentally prepared for this thing to be removed on a certain day that a delay just sets all of our jangled nerves OFF & we find in our own mind that we have to start the process over.

Good Luck with you journey & know that I am thinking about you.

Happy Trails,
Lynn
Translab 01/22/10.  12 x 11.7 x 8.2 mm.
Dr's McKenna/McCall at Mass Eye & Ear,
Dr. Barker at MGH. 
SSD - No other significant problems post surgery, just some minor inconveniences!  Yipee!!
BAHA implant 04/08/11 Dr. Merchant
BAHA Gotcha 07/25/11
"Life is Good"

Keri

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Re: Feeling a bit lost
« Reply #2 on: January 20, 2010, 07:02:40 am »
hi kiwi,
i'm really sorry too about the delay, especially since you're dealing with so many balance issues. i know you must be ready to get it over with and onto recovery.
i don't want to sound trite, but i hope the time does seem to pass quickly for you and you can be a postie soon.
take care,
keri
1.5 left side; hearing loss; translab scheduled for 1/29/09 at Univ of MD at Baltimore
My head feels weird!!

moe

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Re: Feeling a bit lost
« Reply #3 on: January 20, 2010, 09:19:37 am »
Jacqui,
No you're not moaning, just venting. That's what we're here for. You have no control over the little (or big) booger near your brain, and what control you did have (surgery!) just got squashed. It's a business they run, unfortunately. We're the victims.

I know the feeling, somewhat.

I had my eye half stitched shut post op.  Lived in Corpus Christi, TX at the time. Went to San Antonio for the surgery to open the eye. Had a friend go with me, spent night at hotel, got childcare for the teen (husband was stationed in WA at the time).
Next morning, got a call-surgery canceled because they didn't have the "gold weight" in stock! Turns out they could have opened my eye anyway, and I could have gone back for the "gold weight" placement.

I was livid, spent a lot of money that day shopping with my friend, so turned out OK. ;D Oh and IHOP for breakfast with the works.

TWO subsequent surgeries (procedures really).
One to open the eye, and then another to put in gold weight.

Anyway do something for yourself. Pamper, pamper, pamper...... ;)
Maureen

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

Debbi

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Re: Feeling a bit lost
« Reply #4 on: January 20, 2010, 12:02:40 pm »
I totally relate - once you've got your date, and got your mind wrapped around it, you just want to get on with it!  Hopefully the new date will "stick."  I personally think the waiting for surgery was the hardest part - I just wanted to get it done with!

Debbi
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

wendysig

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Re: Feeling a bit lost
« Reply #5 on: January 20, 2010, 01:10:02 pm »
Kiwi,

Sorry to hear that your date has been changed.  I can understand completely how you must feel.  Making the choice for treatment is had enough and once things have been as settled as they can be, it must feel like someone pulled the rug out from under you.  I hope the next two weeks pass quickly.  Come here to vent whenever you need to.  We are here for you.

Wendy
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!

Vivian B.

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Re: Feeling a bit lost
« Reply #6 on: January 20, 2010, 04:32:03 pm »
Hi Jacqui,

I can sympathize with you. I had an MRI in September 2009 and the Neuro told me verbally that my tumour had grown and he was going to make arrangements for the radiation procudure. I got myself all ready to just get a date and be done with it.  When I met with the oncologists, they could not confirm for certain that it had grown and we determined that we would wait another 6 months. It is disapointing but I believe a turn of events is usually for the best.

Vivian
CPA AN(most likely meningioma) 1.6cm by 1.5cm by 1.9cm diagnosed early March 09. Watch and Wait.

Pembo

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Re: Feeling a bit lost
« Reply #7 on: January 20, 2010, 06:16:31 pm »
Vent away friend...we're here. I remember the week before my surgery I had the routine labs and it came back showing I had UTI. I didnt' have any symptoms but I had to take meds and get rechecked before I could have surgery. I was even more stressed thinking I might have to delay surgery.

It will be here before you know it...Stay strong.
Surgery June 3, 2004, University Hospitals Cleveland, BAHA received in 2005, Facial Therapy at UPMC 2006