Author Topic: I am afraid he'll tell me it grew!!  (Read 5461 times)

Kelly718

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I am afraid he'll tell me it grew!!
« on: January 10, 2010, 06:23:11 pm »
I am a new member. At age 26,  I was diagnosed with a very large AN in 2007 and  after 4 weeks of waiting and torturing myself emotionally, I underwent a 12 hour long micro surgery. Besides losing the hearing in my left ear, I was back to my old self in a matter of weeks. My surgeon left a very small sheath of tumor which was stuck to my facial nerve. He said it was too risky to remove it so his plan was to cut out as much of the tumor as possible, thus cutting off the blood supply with hope it would die off. My followup MRI one year later showed that the piece left behind actually was a bit smaller and was only visible on the scans with the contrast. I was thrilled of course and went on to live my life, have a baby, etc. I am now due to see my surgeon on Wednesday to review my recent MRI scans. It's been two years since the last MRI and I AM PETRIFIED that he will tell me it grew! I am driving myself crazy! Is anyone here in the same situation? If so, did the small piece left behind die off or grow? Any help would be greatly appreciated. I am really having a tough time with this right now. Thanks!
3X3cm AN removed via retrosigmoid, 3/07

Dr. Davis is my hero! :)
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pjb

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Re: I am afraid he'll tell me it grew!!
« Reply #1 on: January 10, 2010, 07:07:13 pm »
Just remember everyone's outcome is different if it did grow back in some it might be the same for you I know it is easier said than done but try not to get upset and wait for the MRI for a definite answer there is no need for added stress before your test. I am sure if it died some before it sounds like hopefully it will be gone this time.

Best Wishes,

Pat
Diagnosed with a 1 cm. AN had Retrosigmoid
Approach surgery July of 2009, several problems after surgery.

suboo73

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Re: I am afraid he'll tell me it grew!!
« Reply #2 on: January 10, 2010, 07:09:12 pm »
Kelly718,

I just saw your post and wanted to say 'welcome' to the Forum!
Right now, i am in W & W mode...but i certainly can relate to being nervous before any MRI.

You are so young (i have a daughter almost your age) and SO BRAVE to have already gone thru the surgery!
Many thoughts and prayers for you that you can find peaceful moments and are able to visit your surgeon with calm and focus.

I am thrilled you have gone on to live your life, have a baby, etc.
I believe you will be able to go see the surgeon because your are a wife and mom.
Stay strong and keep us posted on the update.

Sincerely,
Sue
suboo73
Little sister to Bigsister!
9mm X 6mm X 5mm
Misdiagnosed 12+ years?
Diagnosed Sept. 2008/MRI 4/09/MRI 12/09/MRI 1/21/11
Continued W & W

krbonner

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Re: I am afraid he'll tell me it grew!!
« Reply #3 on: January 10, 2010, 09:46:22 pm »
I think your fears are perfectly normal.  My AN was completely removed - nothing left behind at all - and I was still nervous before my MRI this fall (3 years post-op).  Everything was fine, but it was very stressful waiting.

Given that yours seemed to be dying off before, I'd expect the same this time.  But everyone and every situation is different and you won't know for sure until it's over.  Do what you can to relax, and you'll know for certain in a few days.

(((hugs))))

Katie
diagnosed June 2005
2.3cmx1.6cmx1.4cm left AN
translab Sept 13, 2006; Drs. McKenna and Barker in MA (MEEI/MGH)

sgerrard

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Re: I am afraid he'll tell me it grew!!
« Reply #4 on: January 10, 2010, 11:44:03 pm »
I think leaving a bit is becoming more common, and seems like a good way to avoid facial nerve issues in some cases. I'm sure it is nerve wracking to wait, but in most of the cases I have read about on the forum, the leftover bit doesn't grow. And even if it does, they are small enough that they can just be radiated with a quick zap.

So pretend to relax, you should be fine. :)

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.

Jackie

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Re: I am afraid he'll tell me it grew!!
« Reply #5 on: January 11, 2010, 01:43:31 am »
Kelly 718,

Your feelings are so natural. Of course we all experience apprehension prior to MRI's mostly because we all remember getting that first dx which to most of us was a shock. As a Watch and waiter I have learned to give it over to the Lord. As Steve has said, there probably is no growth, and but if there is, a quick zap can take care of it! Remember, worry does no one any good at all, so let God take care of it! Blessings to you,
Jackie
9mm x 11mm Right Side AN mild Tinnitis, and 60% hearing loss
Diagnosed 02/04/2007
Nov.13th, diagnosed with 5mm Meningioma
9/24/08 diagnosed with Aneurysm
Wait and watch per ENT's advice and researching my options!!! What's next???

epc1970

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Re: I am afraid he'll tell me it grew!!
« Reply #6 on: January 11, 2010, 06:02:28 am »
Hi Kelly
I m in the exact situation as you are! I had my surery in June of '08 and a small portion of tumor was left just as your was. My last MRI back on March of '09 showed that what was left is shrinking! My next MRI is in two months on Macrh 1st and and as soon as I made that appt I am sick with worry! So , I guess I am not much help but I hope it makes you feel better that you are not alone in how you feel. I wish you the very best of luck at your appt on Wednesday. Please let us know the results!
Erin

Jim Scott

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Re: I am afraid he'll tell me it grew!!
« Reply #7 on: January 11, 2010, 05:00:33 pm »
Hello Kelly - and welcome.

First, congraulations on your very successful surgery.  Second, let me assure you, along with all the other reassurances already offered in previous posts, that if the tiny bit of AN left ever started growing, radiation would very likely be highly effective in killing it off, as it were.  My neurosurgeon deliberately left quite a bit of my large (4.5 cm) tumor to avoid any post-op complications (mainly, facial paralysis) and 3 months later, I underwent a series of 26 'low-level', very specifically targeted radiation sessions that effectively destroyed the remaining tumor's DNA - it's ability to reproduce. 

I'm fine and you will be too, even if the MRI shows any re-growth, which is long shot, at that.  Please try to calm yourself and have confidence that you'll be O.K...because you will be! :)

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.

jazzfunkanne

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Re: I am afraid he'll tell me it grew!!
« Reply #8 on: January 11, 2010, 05:32:15 pm »
Hi kelly i am in the same boat as you i had my AN removed in dec. 06 so i am 3 years post op, my last scan in aug. 09 showed no sign of growth ofF the bit they left behind, please let me know how you get on, i am always on tender hooks when am in the mri scanner till i get the results.
over 4.5cm AN removed dec 06

Kelly718

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Re: I am afraid he'll tell me it grew!!
« Reply #9 on: January 12, 2010, 07:26:05 am »
Thank you all so much for your comments. I am so glad I became a member. The support feels wonderful. I am trying my best to stay calm and it's easy to keep busy with a 10 week old baby to care for! This time tomorrow it will all be over and I will know what I'm dealing with, which is hopefully nothing!! I will keep you posted after my appointment. Thanks again! Love, Kelly
3X3cm AN removed via retrosigmoid, 3/07

Dr. Davis is my hero! :)
A sense of humor goes a long way!

leapyrtwins

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Re: I am afraid he'll tell me it grew!!
« Reply #10 on: January 12, 2010, 07:30:03 am »
Good luck tomorrow, Kelly.

I hope you get good results.

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

epc1970

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Re: I am afraid he'll tell me it grew!!
« Reply #11 on: January 12, 2010, 08:27:27 am »
Good luck today Kelly! I rooting for you-NO growth, NO growth!

Erin


Kelly718

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Re: I am afraid he'll tell me it grew!!
« Reply #12 on: January 13, 2010, 05:05:43 pm »
I am happy to report that the residual tumor is actually much smaller than last time!!! WHEW!! I have another scan in a year. Thanks again for all of the support! You all really made me feel better.
I am really hoping this means it's on it's way out. My doc said there is no way of him knowing right now if it's dead or not but I will think positively and say it is! :)
3X3cm AN removed via retrosigmoid, 3/07

Dr. Davis is my hero! :)
A sense of humor goes a long way!

epc1970

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Re: I am afraid he'll tell me it grew!!
« Reply #13 on: January 13, 2010, 05:09:25 pm »
Kelly!
YAY!!! I've been thinking about you and hoping this would be the news you would recieve!!!!
Erin

Jim Scott

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Re: I am afraid he'll tell me it grew!!
« Reply #14 on: January 13, 2010, 05:33:50 pm »
Kelly ~

Congratulations!  I just knew you'd be fine.  :)

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.