Author Topic: Seize Your power- diminish your tumor by naming it  (Read 19562 times)

MDemisay

  • Hero Member
  • *****
  • Posts: 892
  • Forever Thankful for Supportive ANA Friends!
Seize Your power- diminish your tumor by naming it
« on: February 05, 2012, 02:32:33 pm »
Hi Everybody,

Lots of people will agree and disagree here! But in 2004, I named my tumor, it helped me greatly, really! It helped me gain control out of something at the time, I had no control! My tumors name was "Irving".

Since then in 2004, I had it operated on and sub totally cut back to where I was calling it "Ir". In 2011, it has grown back a little, now to preserve my sense of control before I nuke it, I have renamed "Irv".

I wonder how the rest of you feel :)! Does anybody care to comment here?


I don't mean to offend anyone, I'm just looking to help people by conceptualizing shrinkage before it actually occurs!


Feel better newbies, help is on the way!


Mike


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!

TJ

  • Sr. Member
  • ****
  • Posts: 282
  • 1.2 cm AN right side, CK November 2010
Re: Seize Your power- diminish your tumor by naming it
« Reply #1 on: February 05, 2012, 02:35:56 pm »
Mike

Right after I found out about my AN I named it "Alvin".  Now all of my family and friends know what I am talking about.  Some even ask how Alvin is doing.  Naming it gives it identity and in my case helped me to deal with the intruder.

TJ

ppearl214

  • Administrator
  • Hero Member
  • *****
  • Posts: 7451
  • ANA Forum Policewoman - PBW Cursed Cruise Director
Re: Seize Your power- diminish your tumor by naming it
« Reply #2 on: February 05, 2012, 02:39:37 pm »
I'm the culprit around here that coined the term/name "brain booger."  :)  Yep, my blob of an AN still keeps its name... the "brain booger."

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

Tod

  • Hero Member
  • *****
  • Posts: 661
    • My blog (work and life)
Re: Seize Your power- diminish your tumor by naming it
« Reply #3 on: February 05, 2012, 03:12:34 pm »
"Bob" is the name of my dark passenger. That way folks can ask, "What about Bob?" Also, Bob was the evil spirit in Twin Peaks.

"Kill Bob" rolls off the tongue about as well as "Kill Bill."

-Tod
Bob the tumor: 4.4cm x 3.9cm x 4.1 cm.
Trans-Lab and Retro-sigmoid at MCV on 2/12/2010.

Removed 90-95% in a 32 hour surgery. Two weeks in ICU.  SSD Left.

http://randomdatablog.com

BAHA implant 1/25/11.

28 Sessions of FSR @ MCV ended 2/9/12.

MDemisay

  • Hero Member
  • *****
  • Posts: 892
  • Forever Thankful for Supportive ANA Friends!
Re: Seize Your power- diminish your tumor by naming it
« Reply #4 on: February 05, 2012, 04:42:39 pm »
Thanks for responding everyone! I knew that I was on the right track with the naming from all the responses I got when I initially came up with the idea in 2004. Back then I got a lot of responses, believe me! Some people were pissed that I would give an unwelcome invader in my brain a name. At the time they thought that personalizing it was harmful to one's psyche, imagine!

I was thinking about naming it "Ignatz" you know like the rat that used to throw bricks at Krazy Kat's head, but every time I thought of it, I just couldn't get that cartoon image out of my head! I think "Irving" was a weird enough substitute. Besides, the short form of that was "Iggy" which sounds like Squiggy (the Laverne and Shirley character)!

What do some others think? I think conceptually, we all have to think, how can I turn something depressing into something positive? This is where, in my estimation, we all have to begin! An acoustic neuroma can be a daunting name to a lay person. Reduce it and one begins to take the power back, and one can make it grow even smaller or for those of us that are lucky, remove it all together!

I wasn't so lucky! I feel truly blessed to have you on my side by association! Let us find strength in each other! Who knows, maybe someday we can meet and help each other! I can only use my left hand, but I may learn to sign using only one hand! What wonders and positive feelings can we all create, if we use our minds?


Mike
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!

chloes mema

  • Sr. Member
  • ****
  • Posts: 414
  • Life is a special occasion.
Re: Seize Your power- diminish your tumor by naming it
« Reply #5 on: February 05, 2012, 07:54:44 pm »
I haven't named mine but my hair dresser has.  Everytime I walk in,he asks how Herman is doing.   ;D

I think I would rather name mine TOM -
T - tormentor
O - of
M - mine

Karen
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

mandy721

  • Full Member
  • ***
  • Posts: 226
Re: Seize Your power- diminish your tumor by naming it
« Reply #6 on: February 05, 2012, 08:07:51 pm »
I haven't named mine but my hair dresser has.  Everytime I walk in,he asks how Herman is doing.   ;D

I think I would rather name mine TOM -
T - tormentor
O - of
M - mine

Karen

I like this!
Husband diagnosed 5/30/09 with 3.2cm right AN
Surgery at  Columbia Presbyterian 8/4/09
Platinum eye weight implant - 8/17/09
17 days in hospital and rehab
SSD, facial weakness, some tinnitus, headaches , balance and eye problems

stephSF

  • Jr. Member
  • **
  • Posts: 95
  • Live each day to the fullest.
Re: Seize Your power- diminish your tumor by naming it
« Reply #7 on: February 05, 2012, 09:26:20 pm »
Mine is gone, so it takes no power from my life anymore!!!! 
1.6 cm AN Translab with Dr.'s Friedman and Shwartz with HEI on 1-25-2012.  I am doing great!  Surgery saved my life :).   Be brave, have a great attitude, and hire the best surgical team!!!!

Seamar

  • New Member
  • *
  • Posts: 31
  • Age 74
Re: Seize Your power- diminish your tumor by naming it
« Reply #8 on: February 06, 2012, 02:54:51 pm »
I'd rather not dignify my AN with a name, but I would like to call him Gonzo -- and soon!
7mmx1.2cmx5mm left AN
GK 10/27/11 with  Drs Golfinos, Rush and Han @ NYU Langone Medical Center

Relax...God is in control.

MDemisay

  • Hero Member
  • *****
  • Posts: 892
  • Forever Thankful for Supportive ANA Friends!
Re: Seize Your power- diminish your tumor by naming it
« Reply #9 on: February 06, 2012, 03:30:55 pm »
For your consideration:


How about Quatto! Like in the Scifi movie that Arnold Shwartzenneger was in the one where the alien was like a growth coming out of the human hosts body!

That movie was made after I had had my surgery, or else I might have chosen that one! As I remember, Quatto was quite large though!

Mike
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

  • Hero Member
  • *****
  • Posts: 10826
  • I am a success story!
Re: Seize Your power- diminish your tumor by naming it
« Reply #10 on: February 08, 2012, 11:09:41 pm »
Never named my AN - but maybe it's because it didn't hang around long enough.  It was only 6 weeks between my diagnosis and my surgery.

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

MDemisay

  • Hero Member
  • *****
  • Posts: 892
  • Forever Thankful for Supportive ANA Friends!
Re: Seize Your power- diminish your tumor by naming it
« Reply #11 on: February 09, 2012, 12:41:54 pm »
Jan,

I appreciate your good news and wish you luck! Can you see why I want to have "Irv" gone? Over the recent weeks he has caused me a lot of heartache and concern with his reemergence!



I don't know what to do and not knowing is costing me lost sleep, self respect, family respect, and signifigantly affects my mood. I would not wish this on my worst enemy.

Right now I want to target by any and all means the little bugger and delete him! Wish that it was so easy!
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!

chloes mema

  • Sr. Member
  • ****
  • Posts: 414
  • Life is a special occasion.
Re: Seize Your power- diminish your tumor by naming it
« Reply #12 on: February 09, 2012, 03:48:11 pm »

I don't know what to do and not knowing is costing me lost sleep, self respect, family respect, and signifigantly affects my mood. I would not wish this on my worst enemy.


My feelings exactly!!!!   :'(

Karen
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

Soundy

  • Hero Member
  • *****
  • Posts: 1329
  • prophetic picture done by my 5 year old, June'04
Re: Seize Your power- diminish your tumor by naming it
« Reply #13 on: February 09, 2012, 04:00:04 pm »
Within hours of diagnosis Bennie got his name ... I was alone when I got the diagnosis and had an hour long drive home in which I talked to myself and made a speech for my husband ...he came in and asked what the doctor had said about my sinuses ( my doctors nurse had told me I needed to go to an ENT because I had some over growth of tissue in my sinuses ... she didn't want to tell me I had an AN that needed to be looked at closer so she lied) ...anyway , my careful planned speech went out the window and I blurted out I have a brain tumor and scared him half to death ...I told him things were OK and told him it's name was Bennie and we decided that until we knew more we wouldn't tell the kids

 it was a way to cope with a known intruder ... I felt violated by him at first but by the time of my surgery 3 and 1/2  years later he was just an annoyance ... naming him Bennie also gave a way for friends to mention him with my girls around ... their aunt was very sick and bed bound ... they always worried about any new thing that cropped up with Kathy and the medical jargon made it worse...

 they didn't know about Bennie until about 2 weeks before I had surgery ... someone could ask how's Bennie and we could talk without upsetting the girls ... Kathy died 4 months before I had surgery at the age of 42 ... my girls were real clingy at 7 and 9 when I had the surgery ...they were worried that something would get me or their Dad ... when we told them about Bennie it made it easier for them to know that Bennie was an unwelcome guest that was being evicted ...acoustic neuroma , vestibular nerve ,  vestibular schwannoma ,
vestibulocochlear nerve , trigeminal nerve ,brain stem involvement  and all the other words that were thrown at me  would have sent them into a tail spin they didn't need ... Bennie as a term was easier to deal with in front of them and covered all ..

naming it also gave me power and ownership over it ... I had Bennie he didn't have me became my mantra ...I didn't let the Bennie Bumps as the little issues that came up were known as ... new hearing loss, dizziness, etc... he was a tenant that was going to be evicted when time was right .. the end
3mm AN discovered Aug 2004
Translab July 2 ,2007
3.2cm x 2.75cm x 3.3cm @ time of surgery

MDemisay

  • Hero Member
  • *****
  • Posts: 892
  • Forever Thankful for Supportive ANA Friends!
Re: Seize Your power- diminish your tumor by naming it
« Reply #14 on: February 09, 2012, 04:50:40 pm »
Soundy,


Right on gir!l Sounds like naming your neuroma was a positive experience for you!  I can not tell you what awesome power I feel now. Irving was reduced before to Ir and grew a little and became Irv.

Well now Irv has to go completely!

I was comfortable sharing space in my brain with him  (and I'd even forgotten him) but now that he has taken to growing again, I have to give him his walking papers!

Three cheers to gaining power over these dreaded things! We have to take back our power, people! My family thinks I am crazy. I assure them and all of you,I am not.

Acoustic neuroma, sounds too exotic! I assure you it is not! It is not cute either (naming it), it's just a spiritual method (mind over matter) I use to tell myself that a little unwelcome intruder has come into my life once more to teach me something. What that is I don't know! But opportunities open up from misfortunes too, perhaps I have a little more time to learn sign language.

Perhaps, I will meet more people as I seek to be rid of it. Meeting people, sharing stories of triumph, becoming more prayerful and less satisfied could be  a good thing too.

Why just this afternoon, I had a long conversation with a work buddy of mine that I hadn't talked to in 11 years. He told me of holistic methods of treatment such as forming prayer circles and praying with big Spanish candles. Perhaps, his call was a sign perhaps it was not.

All I know is he called me from out of the blue and he seemed genuinely concerned and helpful. Maybe he was pulling my leg, maybe not. We talked and talked it was nice to hear from him again. I felt uplifted for a while! That's a good thing. Cheer up people, change is coming! We should all feel relief soon, be well all have a nice weekend!

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!