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Author Topic: I thought it was the end of the world...  (Read 4080 times)

phx

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I thought it was the end of the world...
« on: July 28, 2010, 08:59:18 pm »
when I was first diagnosed. I was sad, depressed, you name it. My first doctors weren't much help. I didn't really know much of what they explained to me. Now I feel like there's been some progress. I'll be getting my mask, mri, and ct scan done in the next week to prepare for radiation. Knowledge is power! Just feeling happy, so I thought I'd post something. Any stories out there! If anyone read my first posts, my outlook on things are different now. Thanks ANA forum!!
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LisaP

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Re: I thought it was the end of the world...
« Reply #1 on: July 29, 2010, 05:20:30 am »
Hi Phx,

Glad to hear that you are doing well, when I was first dx with my AN 2.5 years ago, I was devasted, scared and confused, but with the help of this forum and research, I have been better able to cope with my dx.  I am still W&W, my next MRI is in Oct.  Can you give me a little back ground on when you where dx and where you are going to recieve you radiation treatments.

LisaP ;D
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LisaP
AN at 12mm by 7mm by 7mm,  shown no growth as of September 26, 2013, 5.5 years into this journey.  Next MRI 2015. Doctors: Mason and McKenna.  Continue to W&W

Lizard

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Re: I thought it was the end of the world...
« Reply #2 on: July 29, 2010, 09:42:52 am »
Knowledge is power!  Congrats on your decision.
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

Jim Scott

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Re: I thought it was the end of the world...
« Reply #3 on: July 29, 2010, 01:40:29 pm »
phx ~

Although your initial emotions regarding your AN diagnosis were pretty normal, it's good to see you feeling positive! 

FWIW: My FSR experience was uneventful, almost boring, and I suffered no ill effects at all.  It was also successful (dead tumor).   I'm confident that you'll do well with your CK procedure.

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.

phx

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Re: I thought it was the end of the world...
« Reply #4 on: July 29, 2010, 08:59:50 pm »
I was diagnosed last November with a 4x3 cm tumor on the left side of my head. Had surgery on Feb. 25th with 15% removal. The tumor was too "vascular" (if I'm using the term correctly), so now I'm looking at radiaton to keep it from growing. I'm feeling good. My symptoms are not bad like before. Doctors say I want to make sure it doesn't grow any bigger because it will start to press on my brainstem again. On Monday, I'm going to get my mask, mri, and ct scans done. After that I will schedule radiation hopefully sometime in mid-August. Thanks for sharing!
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LisaP

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Re: I thought it was the end of the world...
« Reply #5 on: August 03, 2010, 05:50:46 pm »
Hi,

What kind of radiation are you going to have?  Keep us posted with how the radiation treatment go and glad to hear that you are doing well.



LisaP ;D
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LisaP
AN at 12mm by 7mm by 7mm,  shown no growth as of September 26, 2013, 5.5 years into this journey.  Next MRI 2015. Doctors: Mason and McKenna.  Continue to W&W

DR

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    • Dennis vs. The Tumor
Re: I thought it was the end of the world...
« Reply #6 on: August 05, 2010, 07:10:52 am »
It is easy to get overwhelmed by the whole situation, but having a place like this forum allows many of us the opportunity to learn from those who have "been there, done that."  A positive attitude goes a long way and it sounds like you are approaching your treatment with a VERY positive attitude!  Best wishes and please keep us informed.

- Dennis
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AN right side 12mm x 9mm x 9mm
Middle fossa surgery 11/4/09 at House (Dr. Brackmann/Dr. Schwartz)
Tumor removed, no facial issues, hearing intact!
http://denvstumor.blogspot.com/

"The greatest trick the devil ever pulled was convincing the world he did not exist."

moe

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Re: I thought it was the end of the world...
« Reply #7 on: August 05, 2010, 07:53:13 pm »
Hi,
I'm glad to see you are feeling better about everything. Sometimes it's better to take care of the booger in stages.
I remember your fears from the beginning and now am so GLAD for you! You sound so much better and confident.
Keep the positive spirit, let us know how things go :)
Maureen
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06/06-Translab 3x2.5 vascular L AN- MAMC,Tacoma WA
Facial nerve cut,reanastomosed.Tarsorrhaphy
11/06. Gold weight,tarsorrhaphy reversed
01/08- nerve transposition-(12/7) UW Hospital, Seattle
5/13/10 Gracilis flap surgery UW for smile restoration :)
11/10/10 BAHA 2/23/11 brow lift/canthoplasty

phx

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Re: I thought it was the end of the world...
« Reply #8 on: August 24, 2010, 10:49:27 am »
Hi eveyone!

Finished radiation about a week ago. So far, everything is going well. Still taking steriods, but other than that I can still do everything I was doing before. Thanks!
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iluuvpups

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Re: I thought it was the end of the world...
« Reply #9 on: August 24, 2010, 10:53:43 am »
Thanks for the update.  Very glad to hear that you're doing so well!
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Original 1.75cm left-side AN diagnosed Feb 2010
Translab surgery May 27, 2010 with Drs. Kartush and Pieper of MEI
SSD on left side, some facial weakness, tear duct doesn't work
Found I actually had a facial neuroma during translab
Remaining 6mm facial neuroma - watch and wait

moe

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Re: I thought it was the end of the world...
« Reply #10 on: August 24, 2010, 11:00:51 am »
Great update. Please keep us informed on your progress, ok? :)
Maureen
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06/06-Translab 3x2.5 vascular L AN- MAMC,Tacoma WA
Facial nerve cut,reanastomosed.Tarsorrhaphy
11/06. Gold weight,tarsorrhaphy reversed
01/08- nerve transposition-(12/7) UW Hospital, Seattle
5/13/10 Gracilis flap surgery UW for smile restoration :)
11/10/10 BAHA 2/23/11 brow lift/canthoplasty

Jim Scott

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  • 1943-2020 Please keep Jim's family in your hearts
Re: I thought it was the end of the world...
« Reply #11 on: August 24, 2010, 01:27:01 pm »
Phx ~

It's good to learn that your radiation treatment went well and that you're regaining normalcy.  We appreciate the update.  Besides, we all love happy endings.  :)

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.

Lizard

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Re: I thought it was the end of the world...
« Reply #12 on: August 25, 2010, 06:58:49 am »
Thank you for the toastie postie update.  Hopefully you don't have any further symptoms so you can continue to improve.
Congrats!
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

bell

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Re: I thought it was the end of the world...
« Reply #13 on: August 25, 2010, 10:52:50 am »
Congratulations on  your radiation. I hope this works for you and you do not feel to many side effects.
Bell
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