Author Topic: Newbee here - surgery set  (Read 3454 times)

Suebedo

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Newbee here - surgery set
« on: August 22, 2010, 01:10:18 pm »
I found out in June I had an AN - small, a little over 1 cm still in the canal. Still have 90% hearing in that ear, loud tinnitis, and some balance issues. Will have surgery at the Univeristy of MN September 30.  Mid fossa to try and retain my hearing. I'm usally not one that thinks the worse but this time, it has been hard. The varities of outcomes make it difficult to know what will happen. I try to breathe and just wait.  Any words of wisdom appreciated.
Diagnosed with AN June 10, 2009. Mid fossa surgery 9/30/10 at University of MN. Tumor over an inch at that time. CSF leak after surgery. Eight years later, regrowth. Starting the decisions all over again.

lori67

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Re: Newbee here - surgery set
« Reply #1 on: August 22, 2010, 01:18:39 pm »
Hi Sue and welcome!

It's hard not to think the worst when you're faced with this type of thing, but there are a whole bunch of us here to help remind you that you'll get through this okay!

I don't think I have any words of wisdom, but some good advice someone gave me was "Prepare for the worst, but hope for the best!".  Turns out it wasn't nearly as bad as I had prepared for!  That was a pleasant surprise!   ;D

Take a deep breath.....feel free to ask any questions. 

Lori ;D
Right 3cm AN diagnosed 1/2007.  Translab resection 2/20/07 by Dr. David Kaylie and Dr. Karl Hampf at Baptist Hospital in Nashville.  R side deafness, facial nerve paralysis.  Tarsorraphy and tear duct cauterization 5/2007.  BAHA implant 11/8/07. 7-12 nerve jump 9/26/08.

iluuvpups

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Re: Newbee here - surgery set
« Reply #2 on: August 22, 2010, 01:19:25 pm »
Hi, Sue.  Welcome to the forum.  I'm sorry to hear about your diagnosis, but glad you were able to find this wonderful supportive community.  

The time before surgery was absolutely the hardest for me.  I was a basket case.  Some things that helped me were to keep busy, stay positive, and not read too much about potential outcomes.  Once you've picked your treatment method and the doctors, there's not much else that's in your hands.  You just have to turn it over and hope for the best.

I wish you great luck!  Give yourself lots of TLC right now.  --Carol Ann
Original 1.75cm left-side AN diagnosed Feb 2010
Translab surgery May 27, 2010 with Drs. Kartush and Pieper of MEI
SSD on left side, some facial weakness, tear duct doesn't work
Found I actually had a facial neuroma during translab
Remaining 6mm facial neuroma - watch and wait

Jim Scott

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Re: Newbee here - surgery set
« Reply #3 on: August 22, 2010, 01:29:13 pm »
Hi, Sue - and welcome.

Your concerns are perfectly normal.  As you've apparently learned already, an acoustic neuroma may be tiny but due to their location, surgery to remove them is necessarily complex and because of all the adjacent cranial nerves, the surgery is a challenge for the doctor and the AN patient.  The good news is that the majority of AN surgical patients do just fine, although there can be some 'bumps in the road'.  I assume you're confident about your doctor and the surgical team that will perform the surgery.  As you know, AN resection is major surgery and you'll probably be hospitalized for 5 days, barring any complications.  The average recovery is 6 to 8 weeks, but of course, that varies with the individual.  Some folks are gung-ho and back to work in a few weeks while some need a few months to fully recuperate.  At 63 (and in otherwise good health) I was in the hospital for 5 days following my 9-hour debulking surgery, driving within 2 weeks (with my doctor's permission) and felt recovered by four weeks, post-op.  I'm retired so returning to work wasn't an issue.   On hindsight, it was probably close to a year, post-op, before I was fully recovered but now, four years post-op/radiation, I'm doing great.  Many other AN patients have had experiences similar to mine...some recovered even faster, although you shouldn't consider your recovery as being a race. 

My advice is - prior to the surgery, try to keep busy and get your stuff in some kind of order.  Prepare to have some help when you return home from the hospital (about a week should be enough) and don't make any plans that would interfere with your recovery.  As the Big Day approaches, try not to obsess about it and use this forum to ask questions, vent or whatever you need to do.  Our members are eager to help and have a wealth of knowledge they're happy to share. 

I'm sure you'll do well and be just fine but we'll be thinking of and praying for you, just the same.  :)

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.

jaylogs

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Re: Newbee here - surgery set
« Reply #4 on: August 22, 2010, 07:23:17 pm »
Hi Sue, welcome to our little club!! I cannot add anything more than what everyone else has already posted, I just wanted to wish you good luck and please continue to post any question or concerns you may have...between all of us, we can get you through this!
Take care! 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

CHD63

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Re: Newbee here - surgery set
« Reply #5 on: August 22, 2010, 08:42:03 pm »
Hi Sue .....

Adding my welcome to this caring and very supportive group of new friends.  What you are feeling is so normal.  It is a scary thing to think about.  As Jim said, try to keep yourself busy doing fun things with family or friends and preparing a few things to make it easier for the post-op days when you return home.  If there is a particular thing that has you worried, share it and others who have been there will help you walk through this journey.  You are not alone.  We all care and are concerned for each new person in our same situation.  That's why we stay active on the forum.

Best thoughts and many 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

leapyrtwins

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Re: Newbee here - surgery set
« Reply #6 on: August 22, 2010, 09:32:05 pm »
Hi, Sue.  Welcome to the Forum  ;D

Mid-fossa will give you the best chance of saving your hearing, so you (and/or your doctor) were wise to choose that approach.

I hope you have a great outcome.  Think positive! 

Good luck,

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

Lizard

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Re: Newbee here - surgery set
« Reply #7 on: August 23, 2010, 07:32:57 am »
Sue,
I also wanted to welcome you to the forum and let you know that we are here for you  :)
This next month of waiting might be tough, so what I tried to do is keep busy.  Surround yourself with people that care about you and do some of your favorite activities.  I also needed to get my house in order for my own piece of mind...
Hang in there,
Liz
Left AN 2.5CM,retrosigmoid 11/2008, second surgery to repair CSF leak. 
Headaches began immediately.  Dr. Ducic occipital nerve resection, December 2011!!!!!

"When you come to the end of your rope, tie a knot and hang on"
-Franklin D. Roosevelt

moe

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Re: Newbee here - surgery set
« Reply #8 on: August 23, 2010, 01:47:46 pm »
Hi Sue,
Good words of wisdom from all, and ditto!
You'll feel so much better once you get the bugger out of your head. If you exercise, try and do as much as possible. Walking, aerobics, will help in the recovery.
Definitely do something extra special or fun as much as possible, stay active. It'll be here before you know it. We are a great sounding board. Welcome :)
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