Author Topic: Another AN newbie  (Read 14597 times)

ANrookie

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Another AN newbie
« on: September 27, 2009, 03:38:45 pm »
hi everyone,

i was diagnosed with an acoustic nueroma about 3 weeks ago.  i got the call from my primary doctor while i was at work.  she calmly stated that my head MRI showed a 1.5cm x 0.95 mm growth in the CP angle area on the left side of my head.  i was numbed by the news.  my first thought was, "omg i'm going to die."  then i calmed myself down and started doing research on my condition.  my boyfriend stumbled upon this site and made an account for me.  the support on this site is amazing.  i would NEVER wish a tumor on any one, but i am comforted to know that i am not alone on this journey.  i've consulted with 3 neurosurgeons so far, 2 advocating GK/ CK and one strongly advocating surgery (all 3 said i would be a great candidate for GK/CK or surgery given my age (34 y.o.) and tumor size.  i still have two more consultations coming up in the next few weeks, one with Dr. Giannotta at USC and the other at the HEI.  i agree that the decision making period is tough.  every day i go back and forth between GK/CK and surgery.  hopefully i will decide on a tretment course that is best for me...although everyday a friend or family member will try to impose there preference on me.  i know in the end it is my own decision and i have faith that everything will be ok in the end.

best regards to everyone on this site!

take care,
cathy
« Last Edit: September 27, 2009, 03:52:42 pm by ANrookie »
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 #1 on: September 27, 2009, 04:16:54 pm »
Hi, Cathy - and welcome! 

You reflected the feelings of all of our members when you stated that you wouldn't wish a tumor on anyone but that this site and, specifically, the forums, help you realize that, indeed, you're not alone. 

You appear to be doing your research and having consultations with good doctors, which is commendable.  No one should be imposing their treatment preference on you and I trust you'll politely ignore those who try.  We gladly answer questions and offer advice when solicited but we are here to support, not impose our preferences.  This is a tough decision you're facing and we're eager to help you make it intelligently and to support that decision, once made.  AN's are relatively rare and we're unique individuals.  There is no perfect treatment and what you chose will be right for you.  I have faith that your faith in a good outcome will be rewarded. 

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 #2 on: September 27, 2009, 04:26:50 pm »
Cathy .....

Welcome to this Forum of kind, caring, supportive, fellow ANers!  It sounds like you are on the right track with all of your research and consultations.  Be sure to take time out to breathe and reflect on all the of the input ..... it can quickly become overwhelming.  At some point in time you will know what is the right decision for you.

Keep us posted as you progress through this decision-making phase.

My 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

Adrienne

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Re: Another AN newbie
« Reply #3 on: September 27, 2009, 05:53:28 pm »
Hi Cathy,

Welcome.  Sorry you have to go through this, but happy to tell you that you'll survive!  I completely understand the overwhelming feelings when you first find out (went through them all.......scared I was going to die, scared my personality would change, angry that I was 'chosen', frustrated at why something so HUGE and not something minor to be 'tested' with.....you get the idea).  The most emotional and difficult time for me was after diagnosis and during the 'research' phase.  Everyone and every specialist seemed to have a different opinion on what should be done.  The decision is a very difficult one, but I'm hoping that once you meet a neurosurgeon or specialist that you trust, you'll know.  If/when that happens, you feel more confident with your decision and can move forward with whatever it is, in a more peaceful way.  All of your energy will be focused on getting through it, and not spent tossing and turning the different options and outcomes around in your head.  I really hope that happens for you soon.  I'm a similar age as you (36) and just went through this 4 months ago.  I'm happy to report that life is back to normal completely.

Good luck.  Yes, glad you found this forum, it's a wealth of information and knowledge.

(hugs)

Adrienne
3.0 x 3.0 x 2.5 cm AN, left side.  Diagnosed Feb. 19th,2009
Retro Sig surgery with Dr. Akagami and Dr. Westerberg on May 26/09 at Vancouver General Hospital
SUCCESS! Completely removed tumor, preserved facial nerve, and retained a lot of hearing. Colour me HAPPY!

imnocleaver

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Re: Another AN newbie
« Reply #4 on: September 27, 2009, 06:53:22 pm »
Hi Cathy,

Sorry that you had to seek us out, but so glad you found us!  I'm a relative newbie here, too, having just been diagnosed in July and only started posting within the past couple of weeks.

Before I found out it was an AN in my head, and only knew that I had a 4mm "growth" in my head, I had the same freakout moment (actually, my moment lasted a few weeks until I could pull my records).  I spent a whole weeklong summer vacation wondering how the interloper in my head was going to affect me.  Since I have a rather vivid imagination and had the luxury of free time on my hands, I started thinking things like:  When they take this thing out, will my IQ drop (it doesn't have far to go)?  Will I lose my ability to alienate everyone through the dark gift of sarcasm?  Will I even remember who & what I like/dislike?  Do I need to make a list of people &/or things I like/enjoy/want to remember?  And, if so, should I intentionally leave anyone off? ;D

By the time I could find out it was an AN, I was actually relieved!

Glad you've been able to line up plenty of consultations, and good for you for knowing it's ultimately your decision. (You can always tell family & friends to go and grow their own tumor if they want to make that choice, but that's a little on the snarky side. 8) )

Best wishes, and glad to meet you.

Michelle
5mm left IAC AN dx 7/13/09
January 2010 MRI showed no measurable growth
W&W!

leapyrtwins

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Re: Another AN newbie
« Reply #5 on: September 27, 2009, 06:57:45 pm »
Hi, Cathy and welcome  ;D

The Forum is a wonderful resource, but you should also contact the ANA for their informational brochures - they're wonderful resources also.

Good luck with your decision - being in California, you have the "luxury" of having the pick of many very qualified doctors (who do radiation and surgery) right in your own backyard.

Best,

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

Kaybo

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Re: Another AN newbie
« Reply #6 on: September 27, 2009, 09:23:27 pm »
Howdy from Texas!  Just wanted to welcome you here - ask any questions - that is what we are here for!

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!

ppearl214

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Re: Another AN newbie
« Reply #7 on: September 28, 2009, 06:04:39 am »
Hi Cathy and welcome.

First, you are SO very lucky to have a boyfriend helping with the homework. Sounds like a keeper to me! :) 

As you can see, everyone here is ready to help with sharing info, experiences, etc to help with your homework process.   Key is this..... the AN is benign (keep reminding yourself that).... it's just a benign growth in a lousy location BUT, it's completely treatable and we're here to help you get through it.  Take your time in the research as your situation is not emergent.  If researching becomes too overwhelming... take a step or 2 back to catch your breath. It's ok. 

Again, welcome.  Good to have you here. We'll help anyway we can.

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

alicia

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Re: Another AN newbie
« Reply #8 on: September 28, 2009, 11:12:31 am »
I would like to chime in and say hello as well.  The "Am I going to die?" question was the first thing I asked my neurosurgeon too!  Completely normal to feel overwhelmed at this point, but as all the others have said this is benign and treatable!  You will make it through.  Our bodies are amazing machines.  Take your time making your decision.  There is no rush.  You will find peace at some point in this process and then you will know!   It is great that your boyfriend found this forum for you.  It covers a lot of topics.  As Phyl mentioned, read up then take a break.  We understand.  Alicia
02/16/18 III to IV post GK Facial Paralysis
12/13/17 Gamma Knife
05/19/09 Translab Larger than expected - Drs used the word "tangerine"   House - Friedman and Schwartz
04/02/09 Diagnosed Left AN 3.2cm x 2.6cm x 2.7cm

SML

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Re: Another AN newbie
« Reply #9 on: September 28, 2009, 03:45:06 pm »
Hi Cathy,

Sorry you had to hear about your AN over the phone and at work no less! That must have been really difficult. My ENT made me come to his office for the news. At least there I had a private room to absorb what he told me and he stayed with me until all of the questions I could think of were answered, including “am I going to die”?  The beginning is definitely a roller coaster ride of emotions, but as others have already said, you will get through this. My brother was the one who found this forum for me and I have to tell you…. It was a lifesaver for my husband and me (Rich56 - he is a member on this site as well). I’m glad your boyfriend found this forum. This is a wonderful place to get support and answers to some of your questions. You are never alone here.

Scarlett
SML(Scarlett)-Massachusetts
1.5 cm x 2.5 cm Cystic AN - Right side
Retrosigmoid 3/18/09 at MGH in Boston,MA.
Dr. Barker - Neurosurgeon, MGH - Dr. Lee - Neuro-Otology, MEEI
no facial issues, SSD right side, balance issues to work on.
Outstanding Surgeons, I'm very happy with the results.

msmaggie

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Re: Another AN newbie
« Reply #10 on: September 28, 2009, 06:03:57 pm »
Hi Cathy,
I, too, heard the news over the phone...just as I was pulling into the parking lot of Office Depot to get some school supplies.  I remember thinking at the time that if the dr. himself called me, it wasn't going to be good news.  I still think about that every time I go to Office Depot!  He told me to get on the internet and find out everything I could about ANs.  I did, and found myself here, just as you did, and believe me, you couldn't have fetched up in a better place!  Words of wisdom, people experienced in interpreting "med-speak," humor when you need to laugh so you won't cry--it's one stop shopping.  The bonus is, you get to hang around for as long as you like, and you WILL like it.  The people here are going to be your new best friends.

Stick around...it's habit forming!  :D

Priscilla
Diagnosed  left AN 8/07/08, 1.9 CM
Surgery 12/10/08 at Methodist Hospital w/Vrabec and Trask for what turned out to be a cpa meningioma.

ANrookie

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Re: Another AN newbie
« Reply #11 on: September 28, 2009, 06:05:03 pm »
hi everyone,

i would like to say "THANK YOU" for all your heartfelt words of encouragement.  i truly feel you are all some of the strongest people i know.  this battle is tough and i'm comforted to know that you all made it through.  i still have a long road ahead of me but knowing that i have the support of my family, friends, AND now my AN family on this forum i know things will be ok.

i will continue to update you on my journey to choosing the right treatment for myself.  today i had an audiology test done to see if or how much hearing i've lost in my left ear.  to my surprise hearing in both ears pretty much the same. this is surprsing to me because after i was diagnosed i really thought that my hearing in my left ear ahd gotten worse...i guess it was all in my head...but then again IT is in my head :)

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 :)

sgerrard

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Re: Another AN newbie
« Reply #12 on: September 28, 2009, 09:13:29 pm »
I still have a long road ahead of me but knowing that i have the support of my family, friends, AND now my AN family on this forum i know things will be ok.

Yes they will be, and that's why we're  here. :)

Welcome, Cathy, and best wishes.

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: Another AN newbie
« Reply #13 on: September 28, 2009, 09:45:34 pm »
i truly feel you are all some of the strongest people i know.  

Cathy -

I can't speak for others, but having an AN and getting through it proved to me how strong I am.  I didn't realize it before I started this journey though.

You will be amazed how strong you are.

Best,

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

Kaybo

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Re: Another AN newbie
« Reply #14 on: September 29, 2009, 08:31:43 am »
...you get to be strong & don't even have to eat spinach!!

;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!

 


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