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questions?586

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Also New
« on: October 06, 2010, 03:20:40 pm »
Hi:

Just checking in after lurking for a month.  I finally figured out how to post.  :D I did figure out how to send a pm.  Thanks Jim for your kind responses.  I've seen Dr. McKenna in Boston and talked on the phone with the Radiation Oncologist at BI (Cyberknife).  They said I could wait and have another MRI the beginning of Dec but now I'm noticing a little facial stuff as well as the already documented hearing loss.  And where did this anxiety come from?  Yikes.

Starr
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AN 1.4 cm x 1.7 cm x 1.0 cm
fair amount of hearing loss right ear
diagnosed 7/29/10

I'm a fun and reasonable RN, now living far from appropriate medical care. Feeling overwhelmed!

Jim Scott

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Re: Also New
« Reply #1 on: October 06, 2010, 03:47:04 pm »
Starr ~

Welcome!  I'm so pleased that you're now able to post! 

The anxiety usually comes with the AN diagnosis.  It's how you know you're normal.  :)

Jim
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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.

TJ

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  • 1.2 cm AN right side, CK November 2010
Re: Also New
« Reply #2 on: October 06, 2010, 04:10:59 pm »
Starr,

Welcome to the forum.  You have made another step in the jouney of AN's.  There is so much to learn and this is the place that can help with the process.   Get all the information you can so that with your doctors you can make the correct decision.

TJ
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CHD63

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Re: Also New
« Reply #3 on: October 06, 2010, 05:24:50 pm »
Hi Starr and welcome to this forum!

It sounds like you are doing well with the research and getting opinions.  Once a decision is made to either wait and watch or a treatment, you will feel much less anxious.  It is the unknown that causes the extreme anxiety in most of us.

Best thoughts.  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

leapyrtwins

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Re: Also New
« Reply #4 on: October 06, 2010, 06:56:32 pm »
Welcome to the Forum, Starr.

If your symptoms are getting worse - or if you are experiencing new ones - watching and waiting might not be your best bet.

While you have no need to immediately jump into treatment, you might want to be proactive.

Jan
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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

questions?586

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Re: Also New
« Reply #5 on: October 06, 2010, 09:09:52 pm »
I'm just loving this "new normal."  Is this like 50 being the new 40?   ;)  Thank you for all your kindness and sharing.  I will follow up on this sooner than originally planned.  I was hoping for the quick prayer miracle healing but it looks like some doctors hands might just need to be involved as well.
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AN 1.4 cm x 1.7 cm x 1.0 cm
fair amount of hearing loss right ear
diagnosed 7/29/10

I'm a fun and reasonable RN, now living far from appropriate medical care. Feeling overwhelmed!

msuscottie

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Re: Also New
« Reply #6 on: October 07, 2010, 08:52:07 am »
Welcome Starr, wishing you all the best!
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Lizard

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Re: Also New
« Reply #7 on: October 07, 2010, 10:13:08 am »
Starr,
Welcome to the forum, and yes the anxiety is totally normal and should decrease some once you've made a treatment decision.  please keep us posted.
Try to relax and enjoy your favorite activities and spend time with great friends and family.  Keeping yourself busy will help as well.
Take care,
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

james e

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Re: Also New
« Reply #8 on: October 07, 2010, 02:10:33 pm »
Welcome to the club. Lots of FRIENDS here. Once you have decided how you will handle this, your anxiety will just disappear. Have you had more than one opinion? Usually the high anxiety seems to be over how to treat your tumor. I changed my mind after three opinions. Regardless of how you get treated, get into good physical shape...it will help speed your recovery. Stay active here, and you will learn more about this tumor here than you will in a week with your doctor. None of us here are doctors, but we are the ones who live with this everyday. Read everything you can get your hands on. Ask lots of questions. Good luck to you.
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