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Author Topic: New to the Forum - and thank you!  (Read 4529 times)

McK

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New to the Forum - and thank you!
« on: June 21, 2009, 05:31:39 pm »
Hi all:

I was diagnosed last month and, since then, AN research has become my focus, as you might imagine.  Thanks to all of you for creating such a wonderful "place" here.  I continue to learn so much from all of you and I'm grateful for your generosity in sharing all of your knowledge and experience - truly priceless to someone like me who is hungry for any and all information as I learn what AN is all about and arrive at my final decision.  I have also been fortunate to speak with several people on the AN support group call list - they were all very kind, patient with my questions and generous with their time and information.  I cannot adequately express how comforting all of this is.  What a terrific group of people!  :)

I have spoken with Dr. Wilkinson and Dr. Schwartz at House, with the Loma Linda proton therapy team (they agree this is not for me), several doctors at Scripss and UCSD.  All agree that I have options - either surgery or radiotherapy/radiosurgery - and have been fairly objective with me.  I have opted for radiation (if surgery is required at any time in the future, it's House for me).  Not sure of the exact approach.  I have come across a great deal of information regarding GammaKnife and CyberKnife - are there any other options here?  I saw that Craig had a positive experience with Trilogy and I'm wondering if there are any more out there who can weigh in on this technology???



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Diagnosed May 2009: 2.5x2.2 AN
Treatment pending

Kaybo

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Re: New to the Forum - and thank you!
« Reply #1 on: June 21, 2009, 05:37:06 pm »
McK~
Hi and welcome to our happy, little group - sorry that you have to be here but glad you found us.  I don't know much about treatments other than surgery but I know someone else will come along and help you out!  Just wanted to give you a big welcome!

K ;D
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Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

CHD63

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Re: New to the Forum - and thank you!
« Reply #2 on: June 21, 2009, 08:15:41 pm »
McK .....

Welcome to this group of ANers!  Sorry you have an AN, but please know that we are here for any and all questions ..... and we sincerely mean that!

Most of us can well remember the flurry of research we did when we were first diagnosed.  Just remember there are many scary things on the Internet and a considerable quantity of biased (or outright incorrect) information out there.  As you digest all of this gathered information, listen to your inner self and know that you need to do what is right for you.

The other thing to keep in mind is to look for the most experienced medical professionals, with the highest success rate, no matter which method you choose.

Keep us posted as to how all of this goes for you.

Clarice
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Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

sgerrard

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Re: New to the Forum - and thank you!
« Reply #3 on: June 21, 2009, 09:59:39 pm »
Hi McK,

Trilogy and Novalis and similar machines can work out well, but I think the best stats are with Gammaknife and Cyberknife. If you can get to one of those two, I would do that.

I am curious what Loma Linda had to say regarding why they though proton therapy was not for you. My impression is that it does not work quite as well as GK and CK for acoustic neuromas, and I am wondering if they see it that way too, or were more against radiation in general.

Steve
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8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

Jim Scott

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Re: New to the Forum - and thank you!
« Reply #4 on: June 21, 2009, 10:25:29 pm »
Hello McK, and welcome!

It's always rewarding to learn of a newly diagnosed AN patient who has found the ANA website and these forums useful.  Thanks for your kind words.

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.

4cm in Pacific Northwest

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Re: New to the Forum - and thank you!
« Reply #5 on: June 21, 2009, 11:01:55 pm »
Welcome!

DHM
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4cm Left, 08/22/07 R/S 11+ hr surgery Stanford U, Dr. Robert Jackler, Dr. Griffith Harsh, Canadian fellow Assist. Dr. Sumit Agrawal. SSD, 3/6 on HB facial scale, stick-on-eyeweight worked, 95% eye function@ 6 months. In neuromuscular facial retraining. Balance regained! Recent MRI -tumor receded!

McK

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Re: New to the Forum - and thank you!
« Reply #6 on: June 23, 2009, 11:01:04 am »
Thanks to all for the warm welcome!  It feels good  :)

Steve: While there are likely additional considerations that I didn't fully explore with Loma Linda re: proton therapy, the leading indicator in advising that this was not the best route for me was the size of my AN and proximity to the brain stem.

I am going to get an opinion from Dr. Chang next and will let you know what I learn.

Until then...
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Diagnosed May 2009: 2.5x2.2 AN
Treatment pending

eab

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Re: New to the Forum - and thank you!
« Reply #7 on: July 02, 2009, 05:39:00 pm »
I posted a similar question under the radiology heading, the thread was called "GK vs. CK and are there any truly happy stories out there" - I don't know how to link you to that thread or I would!  I recieved many helpful responses, they may help you as well.

Good luck!
Beth
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Left side AN 2.5x1.7x1.5cm, limited hearing loss, limited tin., good balance
GK 7/6/09 Hoag Hospital; MRIs at 2, 6 & 12 months show no change in tumor size - hearing etc. same as before GK.

Vivian B.

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Re: New to the Forum - and thank you!
« Reply #8 on: July 02, 2009, 08:03:22 pm »
Hi McK

Welcome to the forum. You have found the right place to receive information and provide information. Soon you will be an expert an offering others advise. Good luck with your decision.

Vivian
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CPA AN(most likely meningioma) 1.6cm by 1.5cm by 1.9cm diagnosed early March 09. Watch and Wait.
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