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Author Topic: Seize Your power- diminish your tumor by naming it  (Read 18592 times)

Soundy

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Re: Seize Your power- diminish your tumor by naming it
« Reply #15 on: February 09, 2012, 05:35:18 pm »
family and friends that knew I named it thought I as crazy too with my methods of dealing with alot of AN issues as they came up ...mainly naming it ... but I figured that what got me over bumps and didn't hurt anyone were all valid ... have a good weekend
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3mm AN discovered Aug 2004
Translab July 2 ,2007
3.2cm x 2.75cm x 3.3cm @ time of surgery

Susan A

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Re: Seize Your power- diminish your tumor by naming it
« Reply #16 on: February 09, 2012, 06:10:32 pm »
Some of my friends named my 2 tumors - Itsy and Bitsy. I'm not sure which is which though ;-)
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2011 8 x 7 mm AN, & 20 x 22 mm M found, both on the left. Mosaic NF2 diagnosed. Some hearing loss
2014 hearing 30% on left, now using hearing aid (HA)
2015 Now have CROS HA - no longer hear enough for HA to be useful in AN ear
2016 Use an FM system on occasion at work to supplement HA

chloes mema

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Re: Seize Your power- diminish your tumor by naming it
« Reply #17 on: February 09, 2012, 06:17:27 pm »
Don't under estimate the power of prayer.   ;)

Karen
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Diagnosed October 2011
Oct '11-9 X 6 mm left ear
Mar '12 - 1.25cm
Tinnitus, imbalance, and mild dizziness (ditsy)
My AN = Annoying Nuisance
Jan'12 W&W
May'12 CK completed
Oct'12 hemifacial spasms
Dec'19 It's back

luttman

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Re: Seize Your power- diminish your tumor by naming it
« Reply #18 on: February 12, 2012, 05:03:15 pm »
People always asked me how I could eat so much and stay thin, so I started telling them that I had a tape worm. Then I named it Freddy. When I found out I had an AN I told everyone Freddy had migrated to my inner auditory canal. Freddy has been radiated this week and I hope he is dying a slow death.

Hopefully you can soon say RIP to IRV.
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chrisransom

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Re: Seize Your power- diminish your tumor by naming it
« Reply #19 on: February 12, 2012, 07:06:08 pm »
No name for it but I frequently refer to it as "my little visitor" or the "the hitchhiker".  The word "Tumor" sounds too ominous. 
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Diagnosed with 21x16x16 mm AN in December 2010.  No change in June 2011 nor in January 2012.  No major symptoms - tinnitus, some fullness in left ear but no hearing loss or other symptoms.
Firmly in the W&W camp for now.

Soundy

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Re: Seize Your power- diminish your tumor by naming it
« Reply #20 on: February 13, 2012, 12:39:24 pm »
Quote from: chrisransom on February 12, 2012, 07:06:08 pm
No name for it but I frequently refer to it as "my little visitor" or the "the hitchhiker".  The word "Tumor" sounds too ominous.

that's  it ... Tumor is just so threatening ... Bennie , the hitchhiker , Freddy etc ... they are not ominous or threatening sounding ... not to take from the seriousness of things , it is just a coping issues ... and naming seems to help many in coping
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3mm AN discovered Aug 2004
Translab July 2 ,2007
3.2cm x 2.75cm x 3.3cm @ time of surgery

MDemisay

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Re: Seize Your power- diminish your tumor by naming it
« Reply #21 on: February 13, 2012, 09:42:05 pm »
Soundy has captured the zen or the flavor of this thread! Congratulations it seems as if we all have to learn how to "conceptualize" shrinkage and not let these little things affect our lives like they have! Whether you are just starting out in the beginning or are in the middle or at the end!
It seems we all have something to gain here....perspective!!

Whether it is actual survivors, caregivers, or family and friends everyone stands to gain something from our journey why not deal with it humorously?
Dealing from a position of strength is vastly better than dealing with this from a position of fear!

Good luck with this challenge everyone!


Mike
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1974 - Dr. Michelson  Colombia Presbyterian removal of 3 Arterio Venous Malformations
2004- Dr. Sisti  NY Presbyterian subtotal removal of 3.1 cm AN,
2012 - June 11th Dr. Sisti Gamma Knife (easy-breasily done)"DEAD IRV" play taps!
Research, research, research then decide and trust in God's Hands!

leapyrtwins

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Re: Seize Your power- diminish your tumor by naming it
« Reply #22 on: February 15, 2012, 12:47:02 pm »
Quote from: chrisransom on February 12, 2012, 07:06:08 pm
The word "Tumor" sounds too ominous.

This is SO true.  It took me at least one year post op before I would call my AN a "tumor" and I couldn't stand it when others used that word.

Every time my neurotologist would mention my tumor, I'd immediately correct him and say "you mean, my acoustic neuroma".  Man must have thought I was crazy  ::)

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

MDemisay

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Re: Seize Your power- diminish your tumor by naming it
« Reply #23 on: February 15, 2012, 04:30:30 pm »
My theory about naming it has one goal- eventual elimination or in my case shrinkage.

If you think you are comfortable with that name then so be it!
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1974 - Dr. Michelson  Colombia Presbyterian removal of 3 Arterio Venous Malformations
2004- Dr. Sisti  NY Presbyterian subtotal removal of 3.1 cm AN,
2012 - June 11th Dr. Sisti Gamma Knife (easy-breasily done)"DEAD IRV" play taps!
Research, research, research then decide and trust in God's Hands!

MDemisay

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Re: Seize Your power- diminish your tumor by naming it
« Reply #24 on: April 19, 2012, 03:38:32 pm »
Hello Again Everyone,

It's has been quite a while since I bumped up this thread but I figured I would just give the newbies out there something to conceptualize and think about as you begin this fascinating AN journey we all have been stuck with. I would have liked to meet you under more pleasant circumstances than this, certainly!

But now that you are here take it as a challenge! Can you come up with a name for your little bugger as some of us have already? There should be a prize for the most imaginitive name at the next biannual conference.

I have my own theories about supplying it with cutesy names, that is something not for me!

Trying to inspire confidence not fear!

Mike
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1974 - Dr. Michelson  Colombia Presbyterian removal of 3 Arterio Venous Malformations
2004- Dr. Sisti  NY Presbyterian subtotal removal of 3.1 cm AN,
2012 - June 11th Dr. Sisti Gamma Knife (easy-breasily done)"DEAD IRV" play taps!
Research, research, research then decide and trust in God's Hands!

MDemisay

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Re: Seize Your power- diminish your tumor by naming it
« Reply #25 on: April 25, 2012, 12:55:18 pm »
Everybody,

Everyday as the death of "IRV" comes closer (June 11th) , I am feeling more and more powerful and in control of my destiny which is of course to be healthy.

 I imagine the radiation in my minds eye as shrinking the tumor to one tenth the size it now is.

 As some of you know, my wife had a bout with breast cancer back in 1992 this year it will have been 20 years without a reemergence of CA.

With this treatment that I am about to undergo (one dose), I can imagine her intense  frustration with me over my reluctance to have this simple thing done one time. Whereas, she had to undergo about 10 treatments of radiation. Believe me she came back from her treatments with burns (which after a time faded).

On June 11th, hopefully we can each be done with radiation forever!

Mike
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1974 - Dr. Michelson  Colombia Presbyterian removal of 3 Arterio Venous Malformations
2004- Dr. Sisti  NY Presbyterian subtotal removal of 3.1 cm AN,
2012 - June 11th Dr. Sisti Gamma Knife (easy-breasily done)"DEAD IRV" play taps!
Research, research, research then decide and trust in God's Hands!

IndySkye

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Re: Seize Your power- diminish your tumor by naming it
« Reply #26 on: May 02, 2012, 11:08:24 pm »
While looking for the cause of my dizziness the MRI revealed two different types of tumors. To keep them straight I named the Meningioma on the left side of my brain "Lucy" and the AN on my right ear "Ethel". Today I schedule July 18th to say goodbye to Ethel! WhooHooo!
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MDemisay

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Re: Seize Your power- diminish your tumor by naming it
« Reply #27 on: May 04, 2012, 12:58:45 pm »
Indy,

Wow! A person who appreciates Lucille Ball, here I thought we were a dying breed. Myself I got rid of my AVM's in 1974 their names were Moe, Larry and Curley.
Before I thought that "Irving" (my AN) was a separate problem, now it seems that because of  some dental x-rays I had between 2004 (I had "Irving" cut down to size) and now 2012 that "Irv" has grown back!     ----Egad! Such is life!

 It certainly teaches us that life is precious, so slow down and smell them once in a great while!!!

Are you in treatment for your meningioma (Lucy)?

Mike

Thank you for sharing your story !
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1974 - Dr. Michelson  Colombia Presbyterian removal of 3 Arterio Venous Malformations
2004- Dr. Sisti  NY Presbyterian subtotal removal of 3.1 cm AN,
2012 - June 11th Dr. Sisti Gamma Knife (easy-breasily done)"DEAD IRV" play taps!
Research, research, research then decide and trust in God's Hands!
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