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Author Topic: Zero Growth  (Read 5137 times)

Guitarmn50

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Zero Growth
« on: August 05, 2010, 07:13:22 pm »
 ;D  For any of you out there who might remember me my latest MRI had NO GROWTH!


I pretty much thought that there would be no way that I would be able to survive this thing in the long run.  I am in a situation where I am a caretaker, and I could not do radiation nor Cyber Knife.  So, basically I resigned myself to the fact of just let it ride, and if it dropped me tomorrow then that would be that!

Now, I am out of it!!! Whoever reads this--THERE IS HOPE FOR YOU!  :)

God Bless!
Guitarmn50...nope 51  ;D
Logged
Misdiagnosed in 2001/02/03 AN diagnosed 10/08/08
Diagnosed with advancing 2.3cm AN on 12-05-09: W&W 6 Months! MRI 07-2010 showed no growth

MRI 1-13 tumor increased 2mm
25.4mm X 22.2mm AN diagnosed on 1-8-13
Audiogram showed hearing loss left ear diminished to 20%

CK on 3/11; 3/12; 3/13    2013

saralynn143

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Re: Zero Growth
« Reply #1 on: August 05, 2010, 07:22:24 pm »
God bless you, Guitarmn50! It's always a pleasure to hear good news like yours.

Take care,
Sara
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MVD for hemifacial spasm 6/2/08
left side facial paresis
 12/100 facial function - 7/29/08
 46 - 11/25/08
 53 - 05/12/09
left side SSD approx. 4 weeks
 low-frequency hearing loss; 85% speech recognition 7/28/08
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Fitted for scleral lens 5/9/13

Guitarmn50

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Re: Zero Growth
« Reply #2 on: August 05, 2010, 07:54:02 pm »
Thank you Sara, and I just hope that many more success stories follow up like mine.
Logged
Misdiagnosed in 2001/02/03 AN diagnosed 10/08/08
Diagnosed with advancing 2.3cm AN on 12-05-09: W&W 6 Months! MRI 07-2010 showed no growth

MRI 1-13 tumor increased 2mm
25.4mm X 22.2mm AN diagnosed on 1-8-13
Audiogram showed hearing loss left ear diminished to 20%

CK on 3/11; 3/12; 3/13    2013

Lizard

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Re: Zero Growth
« Reply #3 on: August 05, 2010, 09:12:53 pm »
Fantastic!  I'm so happy for you  ;D  Good reports always make me smile!  Cheers to many more great MRI results.
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

Guitarmn50

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Re: Zero Growth
« Reply #4 on: August 05, 2010, 09:28:08 pm »
Quote from: Lizard on August 05, 2010, 09:12:53 pm
Fantastic!  I'm so happy for you  ;D  Good reports always make me smile!  Cheers to many more great MRI results.
Liz
Thank you so much Liz! God bless you too!  :)
Logged
Misdiagnosed in 2001/02/03 AN diagnosed 10/08/08
Diagnosed with advancing 2.3cm AN on 12-05-09: W&W 6 Months! MRI 07-2010 showed no growth

MRI 1-13 tumor increased 2mm
25.4mm X 22.2mm AN diagnosed on 1-8-13
Audiogram showed hearing loss left ear diminished to 20%

CK on 3/11; 3/12; 3/13    2013

leapyrtwins

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Re: Zero Growth
« Reply #5 on: August 06, 2010, 12:23:17 am »
I remember you!

Congrats on the clean MRI.

Fantastic news!!  ;D

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

Guitarmn50

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Re: Zero Growth
« Reply #6 on: August 06, 2010, 06:35:33 am »
Quote from: leapyrtwins on August 06, 2010, 12:23:17 am
I remember you!

Congrats on the clean MRI.

Fantastic news!!  ;D

Jan
Thank you Jan, it's definitely the start of a new day for me here!  :)
Logged
Misdiagnosed in 2001/02/03 AN diagnosed 10/08/08
Diagnosed with advancing 2.3cm AN on 12-05-09: W&W 6 Months! MRI 07-2010 showed no growth

MRI 1-13 tumor increased 2mm
25.4mm X 22.2mm AN diagnosed on 1-8-13
Audiogram showed hearing loss left ear diminished to 20%

CK on 3/11; 3/12; 3/13    2013

Mickey

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Re: Zero Growth
« Reply #7 on: August 06, 2010, 09:14:47 am »
Thats great news! Who knows what makes a AN grow and sometimes find a point where it has reached its maximum? I`m sure ther are many people who have taken one with them and may have not even known they had one. Knowing what we have has its advantages though and W+W is a viable alternative, playing it by "ear" no pun intended haha Best wishes, Mickey
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Guitarmn50

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Re: Zero Growth
« Reply #8 on: August 06, 2010, 11:26:59 am »
Quote from: Mickey on August 06, 2010, 09:14:47 am
Thats great news! Who knows what makes a AN grow and sometimes find a point where it has reached its maximum? I`m sure ther are many people who have taken one with them and may have not even known they had one. Knowing what we have has its advantages though and W+W is a viable alternative, playing it by "ear" no pun intended haha Best wishes, Mickey

That's an insightful view Mickey...really, and what makes it grow? Why did it stop? What started the bugger off in the first place?

I think W&W *is* a viable alternative, though certainly not for everyone! It's worth noting, though, that had I not been hampered by my sole caretaker and proprietorship responsibilities from the onset of this illness, I probably would have had it removed or radiated.

You have to wonder what percentage of neuromas just flat out stop growing. Cheers...thanks for posting  :)  

PS playing it by ear lol  :D I was playing electric guitar when my ear half died back in '01 I thought I played my guitar too loud!  :o
« Last Edit: August 06, 2010, 11:28:47 am by Guitarmn50 »
Logged
Misdiagnosed in 2001/02/03 AN diagnosed 10/08/08
Diagnosed with advancing 2.3cm AN on 12-05-09: W&W 6 Months! MRI 07-2010 showed no growth

MRI 1-13 tumor increased 2mm
25.4mm X 22.2mm AN diagnosed on 1-8-13
Audiogram showed hearing loss left ear diminished to 20%

CK on 3/11; 3/12; 3/13    2013

Soundy

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Re: Zero Growth
« Reply #9 on: August 06, 2010, 12:13:51 pm »
congratulations on your big fat ZERO

with these things who knows ??? I was W&W from October 2004 until April 2007 when MRI showed the baby 3 mm AN had grown to a bit over 3 cm ... since MRI in October 2006 ...dcotors say was possibly due to hormones but can't be 100% sure  ... at growth rate they feared that breathing would be "compromised" and I decided I liked breathing ... but I was really enjoying the watching and waiting time of my AN adventure  ...

I was told early on by a doctor that people that die from complications of ANs untreated didn't know they had them ... pass suddenly and they are found in autopsy  ... W&W is definitely a viable option if you know about the AN ... and if I had my druthers I would still be W&W ... having 2 young kids just 8 and 10 made me decide to go surgical route when growth went into high drive and I wanted to keep breathing for them ...

here is continuing to hope all your MRIs come up big fat ZEROS
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3mm AN discovered Aug 2004
Translab July 2 ,2007
3.2cm x 2.75cm x 3.3cm @ time of surgery

Jim Scott

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Re: Zero Growth
« Reply #10 on: August 06, 2010, 12:22:19 pm »
Hey, Guitarmn (51) ~

Welcome back , thanks for the update and congratulations on your latest 'no growth' MRI!  May you have dozens just like it in the years to come.    :)

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.

Guitarmn50

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Re: Zero Growth
« Reply #11 on: August 06, 2010, 01:52:17 pm »
Quote from: Soundy on August 06, 2010, 12:13:51 pm
congratulations on your big fat ZERO

with these things who knows ??? I was W&W from October 2004 until April 2007 when MRI showed the baby 3 mm AN had grown to a bit over 3 cm ... since MRI in October 2006 ...dcotors say was possibly due to hormones but can't be 100% sure  ... at growth rate they feared that breathing would be "compromised" and I decided I liked breathing ... but I was really enjoying the watching and waiting time of my AN adventure  ...

I was told early on by a doctor that people that die from complications of ANs untreated didn't know they had them ... pass suddenly and they are found in autopsy  ... W&W is definitely a viable option if you know about the AN ... and if I had my druthers I would still be W&W ... having 2 young kids just 8 and 10 made me decide to go surgical route when growth went into high drive and I wanted to keep breathing for them ...

here is continuing to hope all your MRIs come up big fat ZEROS
Your story is a sobering reminder of just is at stake here: You made the right call!...you were thinking of your kids.  Everyone has a different story.

I must sincerely apologize that I didn't come on here very much early on.  I had made the decision that I just could not do it. Due to my job as a sole caretaker (ultra complicated!) and my job as a bus driver looking, at the time, of a mere 8 years to retirement I could not make it work even though I knew what the potential outcome might bring.

Thank you  :)
Logged
Misdiagnosed in 2001/02/03 AN diagnosed 10/08/08
Diagnosed with advancing 2.3cm AN on 12-05-09: W&W 6 Months! MRI 07-2010 showed no growth

MRI 1-13 tumor increased 2mm
25.4mm X 22.2mm AN diagnosed on 1-8-13
Audiogram showed hearing loss left ear diminished to 20%

CK on 3/11; 3/12; 3/13    2013

Guitarmn50

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Re: Zero Growth
« Reply #12 on: August 06, 2010, 02:01:15 pm »
Quote from: Jim Scott on August 06, 2010, 12:22:19 pm
Hey, Guitarmn (51) ~

Welcome back , thanks for the update and congratulations on your latest 'no growth' MRI!  May you have dozens just like it in the years to come.    :)

Jim
Thank you Jim   :)  As I mentioned to Soundy my situation was very complicated, and I do sincerely apologize that I didn't frequent the forum a bit more, but any cyberknife operation, or radiation, was completely out of the question...I just absolutely tossed the whole idea of acoustic neuroma into the wind!

Just one word surely sums up my case--LUCKY
Logged
Misdiagnosed in 2001/02/03 AN diagnosed 10/08/08
Diagnosed with advancing 2.3cm AN on 12-05-09: W&W 6 Months! MRI 07-2010 showed no growth

MRI 1-13 tumor increased 2mm
25.4mm X 22.2mm AN diagnosed on 1-8-13
Audiogram showed hearing loss left ear diminished to 20%

CK on 3/11; 3/12; 3/13    2013
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