Author Topic: Why us?-Why me?  (Read 6890 times)

MDemisay

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Why us?-Why me?
« on: March 04, 2012, 09:19:46 am »
My fellow forum members,

To get right down to it, it is to inspire you and others to seek out the very best care by researching, asking questions, seek treatment, and be there on the other side for you as you readjust to living in the world. While for some it may not be the complete package, for me it's a start.

I encourage you to do some self-reflection and to pray a lot. You will find your own way, if you "Let go and let God"!

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: Why us?-Why me?
« Reply #1 on: March 04, 2012, 09:49:33 am »
I would encourage to get a few (for mew it was on the first go round 14) some of you may not have that much time. (His initial search took me 3 months! But with a noitebook it, and some friwendly advice here, it should take about a month. 

6or those of you on watch and wait, this may take a littlwe longer!  Meditation and visualizing positive results goes a long way but after a while " Just let go and let God"

This worked for me in 2004! I have utmost faith that it will work again additionally, I want to thank all of you who have been praying for me so far!

I return the prayers to you and this forum!

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!

ppearl214

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Re: Why us?-Why me?
« Reply #2 on: March 04, 2012, 10:51:46 am »
Hi Mike and thanks for sharing this.

As we tout here to all (and as you note), for those that have options, its a matter of doing homework with multiple dr opinions, talking to others that walk in our shoes and understand what our options are so we can make the best, well-informed decisions we can make for our own unique AN journey (each one unique unto itself), regardless if its an AN or other medical ailments in life.    There are those AN'ers that do not have options and we have to hope that they make the right decision for a treating team that will be able to provide treatment/outcomes for what we strive.

My hope is that the gut, homework, support of those around us and whatever belief system we may have in place will bring us the wellness we seek.


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

chloes mema

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Re: Why us?-Why me?
« Reply #3 on: March 04, 2012, 05:04:26 pm »
Remember, "let go, let God" but God helps those that help themselves!  
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

leapyrtwins

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Re: Why us?-Why me?
« Reply #4 on: March 07, 2012, 01:03:21 pm »
Why not us?  Why not me?

I've always felt I was fortunate to be "gifted" with an acoustic neuroma.

There are so many more devastating things I could have been "gifted" with.

When I first heard I had a tumor I thought it was an inevitable death sentence.

I've always been thankful that 99.9% of ANs are benign.

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

Cindyswart

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Re: Why us?-Why me?
« Reply #5 on: March 07, 2012, 04:06:53 pm »
I AMEN and AMEN. If i had to have something, glad it was this!
Diagnosed 4/19/11 An 1.5x1.9x2.0
Surgery 8/23/11, Dr Fukushima.
Total tumor removed. SSD.
Second surgery 11/11/11 for abscess

I'm gona work like I don't need the money
I'm gona laugh like I'm not afraid to cry
I'm gona dance like nobody's watchin'
I'm gona love while I still have the time!

jaylogs

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Re: Why us?-Why me?
« Reply #6 on: March 07, 2012, 11:28:35 pm »
I liked how you put that Jan...there are so many other things a person can be afflicted with, and if there was any kind of tumor to have, then an AN is probably one of the least of all evils kind of thing.  If you have any kind of faith whatsoever, having an AN (or any other kind of thing) will certainly test that faith, as well as maybe taking time out of your usual hectic lifestyle and do a little self retrospective soul searching. I know I certainly did, as I lie awake at nights unable to sleep (when I was on the steroids), and while I was healing I did have a lot of appreciation for those in worse shape than I was.  Of course as it in human nature, as all that passes and gets back to normal we tend to forget these things, but a part is still in the back of our minds as we get back into the human rat race.  I try to keep that "feeling" alive by offering encouragement and education to those who are just starting on their own journies here, because I surely appreciated all those that did the same before me! :)
Jay
8.1mm x 7.8mm x 8.2mm AN, Left Ear, Middle Fossa surgery performed on 12/9/09 at House by Drs. Brackmann/Schwartz. Some hearing left, but got BAHA 2/25/11 (Ponto Pro) To see how I did through my Middle Fossa surgery, click here: http://www.caringbridge.org/visit/jaylogston

MDemisay

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Re: Why us?-Why me?
« Reply #7 on: March 07, 2012, 11:31:04 pm »
Jan,

This IS a truly unique way of looking at it! Why not us , why not me because I think that most of us like traveling under the radar. A few people like the example setting leadership role.

Now that we are here, what will we do? A few of us will be challenged and some will become better for it, I suppose.....one thing for certain is that life after an AN will be vastly different. The thing of it is, will we be better people because of it?


I am an optimist, I hope so!

I am seeing my reluctant-to-contact-me neurosurgeon tomorrow. Wish me good luck?


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!

Jim Scott

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Re: Why us?-Why me?
« Reply #8 on: March 08, 2012, 09:13:59 am »
Mike ~

Why me?  This is something I believe every sentient human being cries out at one time or another.  However, I believe we all have a purpose in life.  Because I was blessed to have a positive AN experience and don't believe it was simply 'good luck' I am grateful. 

I joined the ANA discussion forums within hours of my AN diagnosis and availed myself of the excellent information and support that was (and is) offered.  Following my surgery and FSR, as my recovery progressed, I kept posting here.  I celebrated 'good outcomes' with those who had them and my heart went out to those struggling with sometimes seemingly intractable issues.  I wanted to help them in whatever small way that I could, so I became an inveterate poster - and enjoyed helping as I was able. 

In 2008, when the ANA director (Judy Vitucci) offered me a (volunteer) position as a forum moderator, I was pleased to accept.  Although I can't respond to every post I do try to be diligent in my moderator position and continue to offer whatever is helpful to our members, wherever they are in their 'AN journey'.  Although I visit other (non-medical) sites daily and have a been a moderator on a hobby site (years ago) I consider the ANA website discussion forums my 'home' and I always come here first.  Not because I'm a moderator but because I want to know how my fellow AN patients are doing and offer them whatever I can.  Perhaps one day I'll consider it time to 'move on', especially as my AN experience fades into history and becomes less relevant to the newly diagnosed.  However, until that time arrives, I consider being here at least part of my purpose at this time in my life, perhaps thus answering the rhetorical question 'why me?

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.

Chances3

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Re: Why us?-Why me?
« Reply #9 on: March 08, 2012, 12:15:37 pm »
This past Valentine's Day I was shopping in a crowded drug store for a card for my wife.  A middle aged man who was wheel chair bound tried to navigate through to get to my isle.  He seemed to be struggling with his joy stick.  I went over and helped him through.  He really couldn't reach the card rack, so I spent time with him, helping him find a card.  Do you want serious or with humor?  I helped him to the cashier and out back into the outside.  I could see by his face that he doesn't really experience such kindness everyday.  It's Manhattan you know, and even though New Yorkers are generally good and kind people, it's a fast pace place.  Moral of the story - before my AN, I would have just went about my business and went back to work.  But I can't say that now, I have a new appreciation for people with disabilities. 

God - I haven't hidden the fact I am a man of faith.  We tend to put God in our terms, but God indeed has a plan for all of His children.  I'm not sure what the rules are here about religion, but I just wanted to share that if you open your heart - He will come in.

Jim - There aren't words for what you have done for me Jim.  I was in a valley, even with my faith, but you gave me so much encouragement to face tomorrow and fight fight fight.  There are other senior people on this site, who have shared and who have conditions worse than me, but there courage and attitude is such an inspiration, thank you all.

So that's my rant for the day, as Tiny Tim from it's a Christmas Carol would say

" God Bless Us All - Everyone ! "

leapyrtwins

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Re: Why us?-Why me?
« Reply #10 on: March 12, 2012, 07:57:34 am »
I liked how you put that Jan...there are so many other things a person can be afflicted with, and if there was any kind of tumor to have, then an AN is probably one of the least of all evils kind of thing. 

Thanks, Jay.
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

leapyrtwins

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Re: Why us?-Why me?
« Reply #11 on: March 12, 2012, 08:05:27 am »
Now that we are here, what will we do? A few of us will be challenged and some will become better for it, I suppose.....one thing for certain is that life after an AN will be vastly different. The thing of it is, will we be better people because of it?

Mike -

don't want to disagree with you here, but life after an AN isn't vastly different for the majority of us.  In my case, my only vast difference is SSD - which I deal with very effectively as the result of my BAHA implant.

Speaking for myself, I am definitely a better person because of my AN.  My perspective on a lot of life has changed dramatically - and for the better.

When my ENT first told me I had "something" growing in my IAC, my first thoughts were a) how long do I have to live? and b) who is going to raise my children? (I had just been awarded sole legal and physical custody in a very long, very costly divorce battle). 

Turns out I didn't need to worry.  I plan on living a very long time and I've been parenting my children without exception. 

Today, almost 5 years post op, there is nothing I can't do except hear out of my left ear.

Good luck with the doc appt.

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

ppearl214

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Re: Why us?-Why me?
« Reply #12 on: March 14, 2012, 04:55:22 am »
Today, almost 5 years post op, there is nothing I can't do except hear out of my left ear.

...and knowing you as I believe I do... having been honored to get to know you as I have.......  what I have bolded that you noted..... :)

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

chloes mema

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Re: Why us?-Why me?
« Reply #13 on: March 14, 2012, 06:51:52 pm »
Phyl - I like your last post here!   ;)

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

leapyrtwins

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Re: Why us?-Why me?
« Reply #14 on: March 15, 2012, 08:31:24 pm »
I wholeheartedly agree with Karen  ;D

There have been times on my AN Journey where I thought I might not be able to do something again - like ride a bike and run on a treadmill - but with time and patience I've been able to master them.

Now, if I could just find the magic bullet to make two teenagers listen to me and decide that I am all-knowing and powerful life would be 100% perfect!!! LOL

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