Author Topic: Another AN newbie  (Read 13968 times)

doctorb

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Re: Another AN newbie
« Reply #15 on: October 02, 2009, 11:18:45 am »
Welcome Cathy,

I've only been active on this site since last Sunday and eight weeks out from my surgery.  My Tumor was to big for GK or CK so surgery was my only option; based on a three consultations.  All I can say is weight your options carefully and you'll be just fine.  I think all of us at one time or another thought we might be nearing our end, regardless of what course of treatment we chose.  Get that thought out of your mind, the science of AN treatment is tremendous, just look at us! 

All the best!

Doc

ANrookie

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Re: Another AN newbie
« Reply #16 on: November 02, 2009, 03:02:33 pm »
hi everyone,

i know i have been MIA since my last post over a month ago.  during that time period i was busy meeting with 4 neurosurgeons and 1 neuro-otologist.  everyday i flip flopped between having surgery or radiation.  after my last consulation, i knew that surgery was the best option for myself.  so my retrosigmoid surgery is scheduled for Friday December 11th at 9 a.m.  i am relieved to have finally made a decision regarding my care, but to be honest with you i am still scared.  i know keeping a positive attitude and having trust in my surgical team is key.  so my AN journey continues...

cathy
Left side AN 1.5cm x 0.95 cm; Diagnosed 08/31/09        Retrosigmoid 12/11/09 Dr. Giannotta @USC University Hospital; Complete tumor removal; preserved nerve; facial weakness x3 months...smiling again :)

cindyj

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Re: Another AN newbie
« Reply #17 on: November 02, 2009, 03:09:48 pm »
Hi, Cathy!  Congrats on making your treatment decision.  Yes, it is such a huge relief to make the decision, but scary at the same time...seems your normal ;)  Be sure to put your date on the calendar so we can cheer you on when the time comes.  In the meantime. breathe deep and let us know if you have any questions.  Where will you be having your surgery?

Best to you,

Cindy
rt side 1.5 cm - Translab on 11/07/08 Dr. Friedman & Dr. Schwartz of House Ear Institute,
feeling great!

"Life consists not in holding good cards, but in playing well those you do hold."  Josh Billings

ANrookie

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Re: Another AN newbie
« Reply #18 on: November 02, 2009, 03:32:41 pm »
hi cindy,

thanks for your words of encouragement!  i will be having my surgery at USC University Hospital with Dr. Giannotta.  after all of my consultations, i felt most comfortable with him.  he was HEIs neurosurgeon early on during his career (in the 80's).  i entered my surgery date into the calendar.  i will stay positive and continue to have faith that everything will be fine.

cathy
Left side AN 1.5cm x 0.95 cm; Diagnosed 08/31/09        Retrosigmoid 12/11/09 Dr. Giannotta @USC University Hospital; Complete tumor removal; preserved nerve; facial weakness x3 months...smiling again :)

Jim Scott

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Re: Another AN newbie
« Reply #19 on: November 02, 2009, 03:47:34 pm »
Hi, Cathy ~

Congratulations on reaching your decision - and attaining a surgery date with Doctor Giannotta. I see you're already on the AN Treatment Calendar so I'll just wish you a fabulous outcome and assure you that the thoughts and prayers of many (me included) will be with you between now and the Big Day (December 11th) when we'll be sending copious amounts of good vibes your way as you enter the OR .  :)

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.

CHD63

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Re: Another AN newbie
« Reply #20 on: November 02, 2009, 04:33:21 pm »
Cathy .....

So glad you have a date for your surgery.  Now you can plan and prepare and then hopefully relax as you reach the date.  We are all pulling for you.

Thoughts and prayers.

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

Kiwi Don

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Re: Another AN newbie
« Reply #21 on: November 02, 2009, 07:22:22 pm »
Hi Cathy,

Glad to hear you have finally got your date, take a rest a get ready for the next part of the AN journey.

All the best

Don
24July09 Diagnoised with Left AN 2.0cm x 1.9cm
Translab Scheduled 7April10

"Received the Ticket, Boarded the Train, and now the Journey has begun??"

ppearl214

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Re: Another AN newbie
« Reply #22 on: November 03, 2009, 02:20:01 pm »
Hey Cathy! Congrats on making your decision... noting 12/11 and sending those wellness wishes your way! :)

Hang in there until then....... and know we're cheering you on.

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

wendysig

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Re: Another AN newbie
« Reply #23 on: November 04, 2009, 03:17:35 pm »
Hi Cathy amid  welcome,

Learning that you have an AN is shocking and I am always amazed that doctors deliver this information over the phone.  My own doc had me come in, and broke the news more gently.  It sounds like you are thinking this through pretty rationally and taking all the right steps that will lead you to your decision regarding treatment.  I know your friends and family have good intentions but it is up to you to get as much information as you need to make an informed decision on the right treatment for you.  Please  feel free to ask any questions or just come here to vent when you need to.  We are here to support you and help in any way we can.  Please keep us posted.

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!

jaylogs

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Re: Another AN newbie
« Reply #24 on: November 07, 2009, 01:25:37 pm »
Congrats on the date! Wow, there are going to be a lot of us doing Dec surgeries here! Myself, Tamster, You, Sobes...and a few others.  What a way to ring in the holidays, eh?  Seriously though, good luck and keep us posted on how you are doing there!
Jay
8.1mm x 7.8mm x 8.2mm AN, Left Ear, Middle Fossa surgery performed on 12/9/09 at House by Drs. Brackmann/Schwartz. Some hearing left, but got BAHA 2/25/11 (Ponto Pro) To see how I did through my Middle Fossa surgery, click here: http://www.caringbridge.org/visit/jaylogston

ANrookie

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Re: Another AN newbie
« Reply #25 on: November 21, 2009, 11:01:38 pm »
hi all,

i just wanted to thank you for your well wishes and positive thoughts.  only 3 weeks away until the big day.  i've been keeping myself busy by working and surrounding myself with loved ones.  but i would be lying if i told you i wasn't anxious and scared.  as each day passes my anxiety level increases and that's when i have to take deep breathes and tell myself everything will be ok. 

also, i wanted to take this opportunity to wish everyone well who will be having surgery in the next few weeks.  we will all be spending the holidays recovering.  i guess that's not too bad, we get to be pamepred by our friends and family during that time.  :)

have a happy thanksgiving!

p.s. any advice on what to bring to the hospital?
Left side AN 1.5cm x 0.95 cm; Diagnosed 08/31/09        Retrosigmoid 12/11/09 Dr. Giannotta @USC University Hospital; Complete tumor removal; preserved nerve; facial weakness x3 months...smiling again :)

cindyj

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Re: Another AN newbie
« Reply #26 on: November 22, 2009, 12:25:34 pm »
Hi, Cathy...sounds like you're doing the right thing by keeping busy prior to your surgery...know it helped me. 

There are several threads around about what to bring to the hospital, someone will probably come along with one of them for you.  But, I think the common theme in all of them is, don't take too much.  The hospital provides all you need.  By the time you're feeling well enough to put your pretty pajamas on, you'll be checking out!  One thing everyone does agree on, though, is lip balm!  It's a must.  That's really the only thing personal that I brought with me...no, I take that back!  Donnalynn highly recommended a soft cuddly blanket, so I did buy a wonderful baby blanket and held on to that until I checked out :D

Happy Thanksgiving to you, too!

Cindy
rt side 1.5 cm - Translab on 11/07/08 Dr. Friedman & Dr. Schwartz of House Ear Institute,
feeling great!

"Life consists not in holding good cards, but in playing well those you do hold."  Josh Billings

CHD63

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Re: Another AN newbie
« Reply #27 on: November 22, 2009, 02:37:47 pm »
Hi Cathy .....
p.s. any advice on what to bring to the hospital?
Bring a spouse, family member, or good friend.   :-*  Seriously, you do need to have an advocate, especially at first when you might not be feeling tiptop.  As Cindy said, lip balm is a must (my husband had to run out and buy some!) ..... also, a picture of your closest loved ones who cannot be there is comforting, as well ..... skip the fancy PJs, but a robe and slippers would be good ..... if you wear contacts, bring a pair of glasses that are your current prescription (someone just posted recently that if you are going to get a new pair anyway, get the kind with flexible bows to spread over a bandage).

What not to bring:  books/newspapers to read (your vision will most likely be disrupted for a few days)

Thoughts and prayers.

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

anissa

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Re: Another AN newbie
« Reply #28 on: November 24, 2009, 12:01:30 am »
Cathy, welcome to the forum :)  Making the decision on treatment was the hardest part for me but I knew it was right when I made it. 

I took all sorts of things to the hospital but what I really used was chapstick, altoids to try to cover the bad taste in my mouth, a picture of my family, and my laptop.  I was typing and updating my friends and family as soon as they'd let me have it.  Everything else I brought stayed in my bag until I got home.  Oh, I did listen to music on my phone, helped to divert the discomfort at night. 

Best wishes to you with your surgery and recovery and we'll be here all along the way. 
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!"

ANrookie

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Re: Another AN newbie
« Reply #29 on: November 24, 2009, 09:56:02 pm »
Cindy, Clarice, Donnalyn, and Anissa,

Thank you for your continued support, prayers, and postive thoughts.  Also, thank you for your advice on what and not what to bring to the hospital.  So sounds like the must things to bring are lip balm, comfy slip on slippers, robe, a soft comforting blanket, and music (music does tend to soothe me).  as for bringing a loved one along for support or as an advocate, i think i have that covered so much so that i don't think the waiting room can accomodate all of them...just kidding, but i have few people wanting to be there as i go into the operating room and as i come out.  my mom, dad, older brother, boyfriend, and 3 of my best friends will be waking up at the crack of dawn with me the morning of December 11th.  I am blessed to have a great support system (which includes all of you too :)

Take care,
Cathy
Left side AN 1.5cm x 0.95 cm; Diagnosed 08/31/09        Retrosigmoid 12/11/09 Dr. Giannotta @USC University Hospital; Complete tumor removal; preserved nerve; facial weakness x3 months...smiling again :)