Author Topic: surgery scheduled for Jan. 20  (Read 3067 times)

Jill

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surgery scheduled for Jan. 20
« on: January 10, 2009, 10:47:09 am »
A big thanks to all of you that post to this discussion forum.  The decision to proceed with surgery was  overwhelming but I have visited this site almost daily and all of you have helped me with the decision tremendously.  My surgery will be at University Hospital in Cincinnati with Dr. Tew and Dr. Pensak.

Most of my questions are the "what if's" immediately after surgery.  I still don't feel I have a good understanding of the process I will be going through while still in the hospital.  I have a call into Dr. Tew's office but any information would be appreciated.

Also, does anyone else have any cervical spine issues.  I think they are almost more concerned with the condition of my spine in my neck.  I will be looking at a second surgery for that.  Boy I hope there is a discussion forum to get me through that one!   :D

Jill


Kaybo

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Re: surgery scheduled for Jan. 20
« Reply #1 on: January 10, 2009, 10:52:31 am »
Jill~
Good Luck on the 20th - we will definitely be covering you in prayer.  I hope that you (& yours) will feel peace between now & then.  Do you have any specific questions regarding after the surgery?  I would be more than happy to chat with you on the phone if you want to PM me your number.

K   ;D
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!

sgerrard

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Re: surgery scheduled for Jan. 20
« Reply #2 on: January 10, 2009, 01:13:26 pm »
Jill,

I think the best way to describe what you can expect in the hospital is "The first three days after surgery don't count." You will not feel good when you first wake up, but you can't judge anything about your outcome from those first few days; you just have to get through them. Once you are up and about, you can tell more about how you are doing. After that you will need lots of rest and sleep, and some time to get back up to speed.

Best wishes for your surgery and a smooth recovery.

Steve
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.

leapyrtwins

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Re: surgery scheduled for Jan. 20
« Reply #3 on: January 10, 2009, 02:24:31 pm »
Jill -

congratulations on making your treatment decision and scheduling your surgery.  From what I've heard, Tew & Pensak are a class act.  Have you put your "date" on our AN Calendar?  There's a link at the bottom of Steve's profile.

As you probably already know, AN surgery is major surgery and I'll be the first to tell you I took it a little too lightly; having never had major surgery before.

That said, the first day is generally the worst and things improve from there.  I can honestly tell you that I made progress each and every day.  Some days the progress was extremely slow, but it was progress.  Patience is key - and oftentimes hard to find; so try hard to "keep the faith".

As Kay mentioned, if you have any specific questions, please ask them.  Everyone seems to have had different, albiet similar experiences, post op and if you give us some direction I'm sure you'll get lots of responses.

Jan
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

cindyj

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Re: surgery scheduled for Jan. 20
« Reply #4 on: January 10, 2009, 03:39:12 pm »
Hey Jill,

Congrats on making your decision and the surgery date - that's half the battle, in my opinion.  The other half is those first few days after surgery which, as Steve said,  really don't count.  As you're in that hospital bed just keep thinking positively and know that there are many here on the forum that have been through the surgery and lived to tell the tale...you will get through it! 

Take care,

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

Pembo

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Re: surgery scheduled for Jan. 20
« Reply #5 on: January 10, 2009, 03:49:11 pm »
Jill, I was very worried about what it would be like after surgery. For me, it wasn't good. I reacted to the pain meds and until I was taken off didn't really wake up. After being hospitalized for 8 days I was moved to a rehab. Their first suggestion was a local nursing home, DH knew there was a better rehab in our local hospital and got me put there.  JUST IN CASE, know what the plan would be IF you were unable to come straight home. Better to be prepared! There are some great posts about what to take to the hospital...chapstick is #1. :) Best of luck to you.....hope to see you posting on Jan 24th from home.
Surgery June 3, 2004, University Hospitals Cleveland, BAHA received in 2005, Facial Therapy at UPMC 2006

Debbi

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Re: surgery scheduled for Jan. 20
« Reply #6 on: January 10, 2009, 04:07:51 pm »
Jill -

I would describe waking up from surgery as being pretty yucky.  However, I don't think it was as bad as I was expecting.  I've never had any sort of major surgery before, so I really didn't have any frame of reference - but I was expecting it to be bad.  The nurses at NYU were very good about checking on my pain level - and I wasn't at all shy about telling them when I needed another "hit" of morphine or whatever.  I am lucky that I didn't have any bad reaction to the anesthesia or any of the drugs - I was a naseous when I woke up, but that passed by the second day. 

As others here have already said, each day got better.  I would definitely suggest bringing a soft pillow if you have one.  I found the hospital pillows to be rather uncomfortable - maybe because of the giant "bonnet" on my head!   ;D  You'll find some other posts of things to bring to the hospital if you search - definitely bring slippers and some moist wipes so you can clean your face.  I felt so grungy after surgery - just being able to wipe my face was immensely satisfying.

Take some deep breaths and try to find some calm moments in the next 10 days.

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

carter

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Re: surgery scheduled for Jan. 20
« Reply #7 on: January 10, 2009, 05:26:03 pm »
glad yu have decided and are ready for the next step.   our thoughts and prayers are with you!


carter
Diagnosed in fall of 2008 with 1.6 * 2.9cm AN on left side. 

Scheduled CK at Oklahoma Cyber Knife in December, 2008 and decided not to proceede on 2nd date that CK was scheduled.  I fired them.

CK performed at St John's Hospital (Tulsa)Jan 2009

HCSTARWIND

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Re: surgery scheduled for Jan. 20
« Reply #8 on: January 10, 2009, 09:45:05 pm »
Jill-contratulations on making the final decision for treatment. I would take this one step at a time.

You asked if anyone had cervical neck issues. I do and am being seen now at Johns Hopkins for it. If you would like to PM me in regards to follow up , I would be happy to talk to you.
Continue to visit your Dr.s and ask , ask, ask, all the questions that will give you the piece of mind. I didn't do this the first time I met with a neurotologist and left very unhappy. It was the support and infor. that I have received on this forum that fueled me with the right questions to ask. I just spent nearly 2 hours with a wonderful Dr. here and I feel much better. Still hanging on to my tumor , that they feel is a lipoma but still not sure. It is more infiltrative so my best option for now is to address my trigeminal neuralgia and cervical neck issues. I take it one day at a time.

Best wishes to you and your upcoming surgery. Take care and stay in touch. Helen
Dx, AN left IAC, 3x9x2x3mm. Now 5x5mm , Nov. 07. Watch and wait for now.

LisaP

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Re: surgery scheduled for Jan. 20
« Reply #9 on: January 11, 2009, 10:22:05 am »
Jill,

Good Luck on your upcoming surgery and please keep us posted on how you do.

Best Wishes

LisaP ;D
LisaP
AN at 12mm by 7mm by 7mm,  shown no growth as of September 26, 2013, 5.5 years into this journey.  Next MRI 2015. Doctors: Mason and McKenna.  Continue to W&W

Jim Scott

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Re: surgery scheduled for Jan. 20
« Reply #10 on: January 11, 2009, 01:48:06 pm »
Jill: 

Belated congratulations on your surgery date.  This is one of the more difficult parts of the AN experience.  Now that you have the doctors, hospital and a surgery date lined up, you can relax a bit. 

Immediately post-op can be a mixed bag but as Steve cogently stated, 'the first three days don't count'.  He's right.  You'll be groggy, possibly nauseous and not too interested in much of anything.  That will pass and within a few days you'll be better able to do a self-assessment.  Many times, things that occur immediately post op are temporary.  I was nauseous and experienced double vision when I tried to read.  Both passed within 3 days.  Headaches can occur but don't necessarily continue indefinitely.  Everyone has a slightly different experience.  Please don't dwell on the 'what if's' to the point of stressing yourself unnecessarily.  You need to go into surgery confident and positive.  I think you will - and I look forward to seeing your first post-op message, here.  :)

My thoughts and prayers and those of many others will be with you on the 20th.

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.

Kim Zingale

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Re: surgery scheduled for Jan. 20
« Reply #11 on: January 11, 2009, 02:33:10 pm »
Hi Jill,

Good luck on your surgery on the 20th! I understand what you mean about wondering about the "what ifs" - I have surgery scheduled for Feb. 9, and I definitely have some anxiety right now. Let's both try to take a deep breath and relax :)

Take care,
Kim
Retrosigmoid surgery Feb. 9, 2009 at Johns Hopkins with Drs. Tamargo and Carey.
http://adventureswithmanny.blogspot.com

Kathy M

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Re: surgery scheduled for Jan. 20
« Reply #12 on: January 12, 2009, 06:13:40 am »
Good Luck to you, my friend!  I'm off to Cincinnati today and will be glad to be a postie the next time we speak.  Congrats on your courage to nail down the date and commit to the surgery.  Sounds like you've got a terrific support system at home and here.  I'm just sure you'll get your questions answered this week and be ready for the 20th! 

Kathy
AN diagnosed 11/14/08, 3+cm, Retrosigmoid 1/13/09, Univ. Hosp., Cincinnati, Drs. Tew and Pensak
no facial nerve or eye issues!
3 more surgeries related to staph infections & osteomylitis over next 13 months.  New diagnosis of breast cancer.  Treatment completed 08/27/10.  Moving on!!!

Jwh

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Re: surgery scheduled for Jan. 20
« Reply #13 on: January 12, 2009, 03:58:16 pm »
Hi,
Aren't we all lucky???  Seems a lot of us will have our surgery in January. I have my pre-op on the 20th and surgery scheduled for 1/26.  We should all celebrate knowing this will be over soon.  I will be thinking of you.
Jen
5/01  1.3 AN removed at NYU using Retrosig. Approach
2/07  Rediagnosed with Regrowth 8 mm (wait & watch mode)
1/09  1.4 AN removed at NYU using Translab (total tumor removal)

JohnnyDiaz

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Re: surgery scheduled for Jan. 20
« Reply #14 on: January 12, 2009, 09:45:31 pm »
This was the first surgery that I ever had and expected to be sick from the meds. But none of the meds made me sick. Even the morphine did not have a weird effect on me . Best advice - Have someone stay with you if possible and have a pen and paper to write down what meds you get and what time you get it.

Don't be afraid to let the nurses know what time you are to get them. After surgery, relax and remember that every day you will get better. Before you know - a week will go by and your strength will be getting better. Just remember that a lot of us have gone through this and you can use this journey to encourage others. Please post and keep us updated. GOD Bless....

Diagnosed 6/08 - 2.5 cm Left AN
9.5hr surgery 10/7/08 w/Dr. Chandler and Dr. Green Baptist Hospital - Jax, Fl
Post Op Complications - Additional Surgeries 10/12 & 10/13
SSD on Left
7 months later I feel great!!!