Author Topic: Well, here I am...  (Read 7803 times)

eggroll

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Well, here I am...
« on: February 14, 2007, 05:53:36 pm »
Hi everybody; my name is Steve (I'm on a few other forums, so to keep things simple I use the same forum name.  As if my name could really be eggroll!) ;D and I'll be going in for the suboccipital procedure on Mar. 2nd at St. Joseph's hospital in Tacoma, WA.  I've had brain surgery once before, following a fall and subsequent sudden stop on pavement (ouch!), so I'm not too worried about the upcoming surgery.  For me, the hardest part about it all is the lack of other options.  I have always been able to find a way out of difficult situations one way or another, but this one is different.  Three basic options, that's all.   I stop short of complaining, however; it's not malignant, I'll be off work for a month or so, I'll be mostly back to normal afterward.  There are worse things to have, yeah?  Anyway, wish me luck; I will hold up a prayer for all of you out there facing this as well.
-Steve

Gennysmom

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Re: Well, here I am...
« Reply #1 on: February 14, 2007, 06:02:58 pm »
Steve, who's doing your surgey?  I live in Puyallup.  I didn't know they did AN surgery at St. Joe's....which is usually my hospital, but they sent me up to Seattle for my AN surgery.  What size is your tumor?  I wish you tons of luck and let me know if you need any help being that I'm a local for you!  Just shoot me a private email!!!!!

Kathleen
3.1cm x 2.0cm x 2.1cm rt AN Translab 7/5/06
CSF leak 7/17/06 fixed by 8 day lumbar drain
Dr. Backous, Virgina Mason Seattle
12/26/07 started wearing TransEar

Ready4Answers

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Re: Well, here I am...
« Reply #2 on: February 14, 2007, 07:35:21 pm »
Hi Steve,
Best of luck with your upcoming surgery!  I'm still in the standby stage of my diagnosis and just recently found this forum.  I have my first MRI next month so I'm just not sure what's going on yet.  I'd also be interested in knowing who's your doctor.  I live in Aberdeen and, although I've had a surgery at the UW many years ago, it would be nice to know that there are options in the Tacoma/Olympia area.

Again, best of luck with your surgery.
Grace

Battyp

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Re: Well, here I am...
« Reply #3 on: February 14, 2007, 10:45:27 pm »
Hi Grace and Steve geesh is there an epidemic brewing in WA?  All my best to you steve!  Since I know it's cold up there make sure to keep your head warm after your surgery!  Mine ached in the first cold spell we had and in Fl you know it wasn't that cold  LOL  Hope all goes well!


Joef

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Re: Well, here I am...
« Reply #4 on: February 15, 2007, 08:38:35 am »

Welcome eggroll ...(I mean Steve!)  :D
4 cm AN/w BAHA Surgery @House Ear Clinic 08/09/05
Dr. Brackmann, Dr. Hitselberger, Dr. Stefan and Dr. Joni Doherty
1.7 Gram Gold Eye weight surgery on 6/8/07 Milford,CT Hospital

Sam Rush

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Re: Well, here I am...
« Reply #5 on: February 15, 2007, 10:09:09 am »
Welcome!! Do you mean suboccital or retrosigmoid?? How big is your AN  How is hearing??
1 cm AN translab, Dr. Brackmann, Dr. Schwartz, Dr Doherety HEI   11/04   Baha 7/05

Obita

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Re: Well, here I am...
« Reply #6 on: February 15, 2007, 10:18:01 am »
Hi eggroll and welcome!!

Best of luck to you -  March 2 will be here before you know it.  Life after AN
surgery is good!!

Kathy
Kathy - Age 54
2.5 cm translab May '04
University of Minnesota - Minneapolis
Dr. Sam Levine - Dr. Stephen Haines

ppearl214

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Re: Well, here I am...
« Reply #7 on: February 15, 2007, 10:24:44 am »
Hello Eggroll Steve! :) (gawd, that sounds so kewl!)

Wishing you well on your upcoming procedure and keep that positive attitude. There's a lot of AN'ers on this site that are located up your way!

Hang in there and keep your chin up!  Again, welcome!

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

Sue

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Re: Well, here I am...
« Reply #8 on: February 15, 2007, 12:12:15 pm »
Hi Steve,

I'm down here in Vancouver USA, wishing you the best of luck with your surgery (the day after my birthday, in case you need THAT information ;D)  Hoping that everything works out the best for you. 

Take care,

Sue in Vancouver
Sue in Vancouver, USA
 2 cm Left side
Diagnosed 3/13/06 GK 4-18-06
Gamma Knife Center of Oregon
My Blog, where you can read my story.


http://suecollins-blog.blogspot.com/2010/02/hello.html


The only good tumor be a dead tumor. Which it's becoming. Necrosis!
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Jim Scott

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Re: Well, here I am...
« Reply #9 on: February 15, 2007, 04:04:24 pm »
Eggroll/Steve:

Hi, and welcome.  I realize you're experienced (having undergone a prior brain surgery procedure) but as a 'veteran' of 'retrosigmoid approach' AN microsurgery (and subsequent FSR treatments) I can try to prepare you for this specific procedure and it's ramifications.  The surgery - if you have surgery - will take a good part of a day (or night, as the case may be).  Mine took over 8 hours.  Of course, you'll be 'out' and know nothing.  Your first few days post-op will mostly be a blur, and probably spent in ICU.  You'll sleep - a lot.  If all goes well, you'll have no facial paralysis or other complications.  I didn't.  With good health going in, no serious complications and a positive attitude you'll be leaving the hospital in less than a week (I was out on my 5th day) and probably be back to work a few weeks after that.  My initial recovery took about six weeks.  Some AN post-op patients need longer to recuperate, some even less.  This is an average.  I was driving 2 weeks following my surgery, if that's any guide. 

Balance 'issues' are commonly a major component of AN microsurgery recuperation and those often need to be worked out via exercises, but they do resolve (in most cases).  Mine did.  Retaining your hearing in the ear affected by the tumor may be problematic but the 'retro' procedure is supposed to offer a decent chance, assuming you have not lost much hearing on the 'AN side', pre-op.   My hearing in that ear was already gone so that wasn't an issue for me.  The surgeon used the 'retro' approach simply to have a better access to the tumor.  Fortunately, I experienced few post-op problems.  In the experience of most folks that have undergone AN surgery, your first week home from the hospital will likely be one that involves a lot of sleeping and resting, so don't plan on doing much, right away.  Remember: time heals.

Acoustic neuroma tumors and their surgical removal is not a simple one-shot-and-you're-done situation, as with some surgeries.  Post-op, there are usually lingering 'reminders' of the tumor (as well as the surgery) that can last for some time, although most symptoms eventually either disappear or become so minimal that they can effectively be ignored.  Well, that's been my personal experience.  Not every AN patient is as fortunate, as some of the posts here demonstrate.  Obviously, no one can guarantee anything as we are all unique and acoustic neuroma tumors (and their effects) are often vastly different in each patient.  If you have a small AN tumor (under 3 cm) you may be a candidate for non-invasive radiation treatment instead of surgery.  Your MRI results (and your physician) will let you know.  Radiation is another story and as I only had it as an adjunct to microsurgery, I'll let those who have undergone that specific treatment explain it, if they wish.  I can tell you that it's painless but radiation treatment does have some after-effects, just as surgery does.  Usually not as severe.  Again, I'm no expert on 'Cyber-Knife' or 'Gamma-Knife' procedures, so I won't try to comment further on them.

I hope and pray that your upcoming surgery is a success and your recovery is rapid.  I wish you all the best as your surgery date approaches.  Stay focused and don't allow panic to overtake you at any time.  Although relatively rare, acoustic neuroma tumors are both benign and treatable.  There will be plenty of life to live after you get through this.  If you need and/or decide on surgery, be sure to choose an experienced neurosurgeon who has performed this operation successfully, at least 100 times or more.  Experience really does make a huge difference when it comes to AN removal.  It's a delicate, challenging, tedious and lengthy operation that you want someone with lots of AN-specific experience doing to ensure success and a lack of complications, which can happen to anyone but can also be avoided in many cases, if the surgeon is experienced in this specific procedure, as my neurosurgeon was.     

Again, all the best as your AN 'journey' continues.  Please know that you are not alone.  Come back as often as you wish.  We'll be here for you.



Jim

« Last Edit: February 19, 2007, 03:43:46 pm by Jim Scott »
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.

jtd71465

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Re: Well, here I am...
« Reply #10 on: February 15, 2007, 06:28:05 pm »
Steve-

Keep in mind everyone is different, some are back to work in as liitle as four weeks while others take twelve weeks.  I'm 5 weeks post-op and feel great.  Slight balance issues, nothing major that time will not heal.  I was extemly lucky my surgery began at 5:00PM and was completed at 8:30PM, I was told that the tumor removal took 1.5 hours.  My stay in SICU was fine, as was already mentioned I slept and slept and slept but remember everything that happened from the time I woke from surgery.

My first three questions while between the OR and recovery rooms were:

How is my face?
Did they get the entire tumor?
Could they tell anything about my hearing?

You will be fine.


Joe-

I had the same surgery that you are going to have, my tumor was estimated at 1cmX1cmX7mm.
Right side AN removed 1/10/07 @ NYU Medical Center
Dr's Roland and Golfinos

Patti UT

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Re: Well, here I am...
« Reply #11 on: February 15, 2007, 07:56:09 pm »
,
 Sorry your having to join our club, but your in good hands here, great group of folks on this forum. Best of Luck with the usrgery Eggroll.

patti UT
2cm Rt side  middle fossa  at University of Utah 9/29/04.
rt side deafness, dry eye, no taste, balance & congintive issues, headaches galore
7/9/09 diganosed with recurrent AN. Translab Jan 13 2010  Happy New Year

eggroll

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Re: Well, here I am...
« Reply #12 on: February 15, 2007, 10:28:55 pm »
Wow, what a welcome! ;D  I'm going in for my pre-op Feb. 21st; I'll get as much info as I can and post it here afterward.To be honest, I figured I was the only person within a zillion miles of here with this problem.  It's nice to have some company, though I would rather we were connected by something else less...medical.  Oh yeah, I'm in Olalla, WA (say what?); it's just past Gig Harbor, for all of you Washingtonians.

My story (somewhat): I went to have my ears checked in Nov. when I noticed my left ear hissing, like an air conditioner was blowing next to my head.  The doc (Thomas Knipe, Tacoma Ear and Balance ) suggested an MRI, which I almost declined due to all the freekin' ice on the roads. That's when I got the news; I can't tell you what the measurements of my AN are, but I do know (from my web snooping) that it is a stage 2, meaning that it has grown beyond the auditory canal and is heading for the brain stem.  Dr. Knipe referred me immediately to Dr. Charles Souliere who then told me what I was looking forward to, as if anyone could look forward to this.  I haven't really given it too much thought since then; maybe I just don't want to deal with the details, maybe it's a fatalistic outlook, maybe it's a dash of good ol' American denial.  However, the closer I get to the surgery date, the more I am thinking about it all.  Nothing like an unstoppable calendar to make you see your reality.

Anyway, thanks again for the warm welcome.  I'll be checking in again .