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Author Topic: My newbie story  (Read 7098 times)

wendysig

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Re: My newbie story
« Reply #15 on: December 11, 2009, 11:37:28 am »
Hi Sophia and welcome,

Having read your story, I can truly relate -- I was also convinced that I had an earwax problem prior to seeing my doctor.  Discovering you have an AN is  a scary diagnosis but it sounds like you are doing everything right and I think you will find the people here a wonderful source of information, understanding and compassion.   Because of the size of your AN you should have time to investigate all possible postions and as Jan suggested Dr. Chang at Stanford has helped quite a few of our members and it would be a good idea to schedule a consultation with him.  Whether you choose Cyberknife, Gamma Knife (another form of radiosurgery) or microsurgery, you need to understand the pros and cons of each in order to make an informed decision.  Since being informed enough to make that decision and finding the doctors  who will  actually treat you  is the hardest part of the AN journey, in my opinion, I think after that everything else will fall into place.  Feel free to ask any questions or just vent when you need to.   We are here to help however we can.

Best wishes,
Wendy
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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!

mssophy

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Re: My newbie story
« Reply #16 on: December 11, 2009, 10:48:41 pm »
Thanks again everyone for the wonderful welcome.

I'm kinda bummed. I was really looking forward to attending a ANA Support Group Meeting on Saturday that was scheduled to have a presentation on Surgery vs. Radiation but the speaker rescheduled.  :(

Oh well. It's raining here in Los Angeles. I don't want to drive if I don't have to.

I spent a lot of time of the last few days reading through the forum. I can't tell you how helpful this has all been for me. I feel a little more at peace knowing that I don't know what I'm going to do...lol  :D

When speaking with my therapist about my concerns regarding surgery and the impact on my baby, she mentioned that if I am considering surgery perhaps it would in fact be better to do while my daughter is so young. Once she is older she could have more anxiety if she knows "mommy is having surgery." Yikes! Didn't even think about it like that. I guess that's why she's the therapist...lol  ;)
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Sophia (mssophy) age 36
1.3 cm AN left side diagnosed 10/20/09. Was undecided then surgery was postponed due to pregnancy. Tumor removed 02/14/12 at USC. Deaf in AN ear. Baha implant but no device yet. New symptoms in 2014; possible regrowth; pending MRI

sher

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Re: My newbie story
« Reply #17 on: December 16, 2009, 09:25:44 pm »
sorry it has taken so long for my reply.. I have had family here for the last 2 weeks.
You asked if I have had anxiety and worry waiting for the MRI's. I have had some but not overwhelming and then when they saw necrosis and slight shrinkage happening at 9 months, I was elated! I really feel like the percentages were in my favor. And I was not ready to face some of the possible side effects of surgery. I have done very well and am feeling like I am going to feel close to normal again.

Good luck with your decision. I am here if you need any more info.

Sincerely,

Sherry
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1.2cm x 0.6 cm extracanicular component (7 mm) 05/08/08
MRI in AUG 08  showed 30 % growth
Having CK 9/30, 10/1 and 10/2/08
1/12/08 MRI shows swelling

ginger21

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Re: My newbie story
« Reply #18 on: December 16, 2009, 09:59:44 pm »
sorry to be chiming in here late, but I have been so busy latley with my girls and work. I too am new at this and found the forum to be helpful, I have not posted much but come as much as I can to read what others write. It has been so helpful. Like you I was in a panic at first. But now I feel more at peace about it. Also like you I am leaning more tward CK, rather than surgery. Surgery just seems so scary to me. I have two young girls 12 and 4 and right now my husband is out of work. So to be off work for a long time seems dificult at this time. Hopfully this economy will be turning around soon and he will get a job and we will not have to worry somuch.
But like other have told me here, you are not alone, you always have a friend just a key stroke away.

Ginger
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W & W as of 01/27/2010 keeping my fingers crossed for the next 6 months
4mm AN-right side
www.facebook.com/gingerleigh72

mssophy

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Re: My newbie story
« Reply #19 on: May 03, 2010, 03:45:44 pm »
Hello again to you all. Sorry that it has been so long. So I finally decided to go ahead and have the surgery. Got through all of the insurance red tape and had a surgery date finally scheduled for 2/26/2010 at USC University Hospital (FIGHT ON!) with Dr. Giannotta. Had a bunch of lunch dates with friends and family and had everyone over the day before my big day. Got up super early and was all ready to go when about 15 minutes before they wheeled me into the OR the surgeon came out and told me my surgery was gonna be cancelled. WHAT?!

PREGNANCY TEST CAME BACK POSITIVE!

OMG! So while all the docs are saying "Congratulations" all I could think was, "What do you mean I'm not having surgery?!"

Thank God they do blood work just before, as I had NOOOO idea I was pregnant. I was only 3 weeks at the time and believe me was NOT supposed to be preggo!

So....the saga continues. Docs all said I can wait since my tumor is relatively small. Baby is due 11/4/2010 and I want to try to nurse for a few months and then have the surgery.

Crazy huh?

Missed you all....not a postie yet  ;)
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Sophia (mssophy) age 36
1.3 cm AN left side diagnosed 10/20/09. Was undecided then surgery was postponed due to pregnancy. Tumor removed 02/14/12 at USC. Deaf in AN ear. Baha implant but no device yet. New symptoms in 2014; possible regrowth; pending MRI

Kaybo

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Re: My newbie story
« Reply #20 on: May 03, 2010, 04:52:35 pm »
WOW!!  CONGRATULATIONS!!  Take your time, enjoy your baby and don't worry about the AN - it will all work out the way it is supposed to!!

K   ;D
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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!

sunfish

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Re: My newbie story
« Reply #21 on: May 03, 2010, 06:35:51 pm »
That's amazing!  What a great story you'll have to tell the kiddo in a few years!
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Rt. side 14mm x 11mm near brain stem
Severe higher frequency hearing loss
I use a hearing aid (Dot 20 by Resound)
Balance issues improving!!!!
Cyberknife March17, 2010
Roper Hospital Cancer Center, Charleston, SC

CHD63

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Re: My newbie story
« Reply #22 on: May 03, 2010, 08:02:51 pm »
Sophia .....

I missed all of your original posts when I was on a break from the forum.  WOW, what a shocker to think you are having surgery, only to find out you are pregnant.  But, congratulations.  Chances are the AN will behave itself for the next 6-9 months.  That will give you time to enjoy the new little one and be well established with the breastfeeding.  Someone on here had surgery shortly after delivery and was able to pump and freeze enough milk for the baby to have during her hospitalization ..... if you should choose to do that, it is possible.

Best thoughts and prayers for a stable AN the next several months.

Clarice
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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

Lizard

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Re: My newbie story
« Reply #23 on: May 03, 2010, 08:12:55 pm »
I was not on the forum when this thread first started,  I can't believe you found out you were pregnant the morning of your surgery.  Wow...well obviously wasn't meant to happen at that day or time.  Holy cow you poor thing, so excited for you at the same time.  I'm happy the Dr's were OK with you waiting, due to your tumor's size and probably the symptoms as well. 

Congrats and keep us posted!

Liz
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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

ANrookie

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Re: My newbie story
« Reply #24 on: May 28, 2010, 03:54:01 pm »
Hi Sophia,

Congratulations on "bun in the oven".  Well we are all lucky that the type of tumor we have (had) is very slow growing so you have time to enjoy your pregnancy and birth of your child for a while.  I had my surgery with Dr. Giannotta on December 11, 2009 (at the age of 34) and could not be more pleased with my surgical results.  You will be in great hands with Dr. G and the rest of the USC University Staff.  I am almost 6 months post-op and life is back to normal well minus hearing in my left ear, but that's no biggie.

Any way, just wanted to drop you a line and send you positive vibes.  And again, CONGRATULATIONS!!! wonderful news! :)

Take care,
Cathy
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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 :)
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