Author Topic: Promoted from guest to member  (Read 3401 times)

Upstate

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Promoted from guest to member
« on: May 23, 2012, 07:23:43 pm »
After spending many hours on this forum I finally decided it was time to introduce myself.  My Dr. tells me my AN is rare but my story seems to be a common one. In January I saw the ENT suspecting I had an ear infection as my left ear felt so plugged it was affecting my balance and hearing(along with some " strange ringing noise in my ear" I told the Dr.  I have since learned what that is.)The hearing test showed significant hearing loss on left side.  Dr. ordered an MRI and two weeks later I was diagnosed with a 13mm x13mm x12mm acoustic neuroma. Luckily for me I found this sight within days of my diagnosis and have learned so much!  I read my MRI report in January and did not understand anything it said.  I read it again the other day and was amazed at how much I understood.  I had Gamma Knife in March.  I want to thank all of you so much for being there when I needed it most, when I was going through some of the worst days of my life and feeling confused and so alone.  I still have questions,and tears, but I am learning more each day.Thank You! Thank You! Thank You!

KBL

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Re: Promoted from guest to member
« Reply #1 on: May 23, 2012, 10:13:16 pm »
Hi, I'm glad you found us.  This amazing group of people have encouraged me so much.  I have found when I have questions or certain feelings, someone else has had the same ones at some point.  It helps so much to know we are not alone in this journey.
Karen
5.6 cm. left side retrosigmoid surgery January 2010.  Dr. Villavicencio, Boulder, CO  Cyberknife April 2010  Left side  facial paresis started September 2010.  Gold weight implant Dec. 2010.  Total hearing loss on left side.  As of today, tumor still appox. 28x18x8 mm

jaylogs

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Re: Promoted from guest to member
« Reply #2 on: May 24, 2012, 03:20:41 am »
Hello and welcome!!  That's what we are all here for, to vent off of, answer questions, and just good old morale boosters! :)  Let us know how it goes as time goes on.  Take care!
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: Promoted from guest to member
« Reply #3 on: May 24, 2012, 08:28:51 am »
Welcome Upstate,

Isn't this site fantastic! I am sorry you have an AN but am truly glad that you found us. For although, we in actuality may be many miles apart we are with you in your shared diagnosis. This site is very comforting, it is good to know that if you need it you can discuss issues here that you could not discuss anywhere else and find understanding.

As you may know from reading my bio, I have had brain issues for quite sometime now (read below). It might not be apparent though that in 2004 I was on my own researching doctors (14 of them as I wanted to avoid more surgery)and was left to follow my own instincts. I would not wish that (searching alone and follow your own instincts) on anybody and am gratified that this site exists now because although I knew of its existence then I did not make full use of it. I would encourage you to make use of all the resources that are on this site.

To that end, we are here should you need us to discuss things as you need to bearing in mind that none of us has a medical degree and that you should do as your research and follow up with your doctors. Welcome to the ANA 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!

leapyrtwins

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Re: Promoted from guest to member
« Reply #4 on: May 25, 2012, 12:02:23 pm »
I always love it when a "lurker" becomes a member.

Not that I mind lurkers, it's just that members can share - which is so important to this Forum.

Welcome, Upstate.

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

Jim Scott

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Re: Promoted from guest to member
« Reply #5 on: May 25, 2012, 01:18:46 pm »
Hi, Upstate ~

I'm delighted that you decided to register and post and equally pleased that you found the ANA website forums so helpful.  That kind of comment makes my day and certainly validates the discussion forums existence.

I wish you well as your recovery continues and of course, as my mother used to say to infrequent guests, 'don't be a stranger'!  :)

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.

james e

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Re: Promoted from guest to member
« Reply #6 on: May 29, 2012, 11:43:56 am »
You are a "postie" with only 2 post...you are way ahead of the game. Congrats on your treatment!

James

Upstate

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Re: Promoted from guest to member
« Reply #7 on: June 02, 2012, 07:20:03 pm »
Thank you for all your kind words.  I guess there really is "comfort in numbers".  While I of course wouldn't wish this on anyone, it is comforting to be able to speak with people who know what it feels like to have a Dr. say the words "You have a brain tumor." And more importantly to see people dealing with this but also willing to help others deal with this too!