Author Topic: New member, have a relative diagnosed with AN  (Read 3006 times)

user222

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New member, have a relative diagnosed with AN
« on: November 20, 2008, 06:02:54 am »
Hello you have a great support site.I'm a new member, and as a relative was diagnosed with AN I found your forum really helpful.

LisaP

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Re: New member, have a relative diagnosed with AN
« Reply #1 on: November 20, 2008, 06:19:16 am »
Hi and welcome,

I am also a "Newbie" dx in March of 08, welcome and feel free to ask any and all questions.  I am on the watch and wait.  Can you give a little more info on your size and what you are doing? 

thanks

LisaP ;D
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

msmaggie

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Re: New member, have a relative diagnosed with AN
« Reply #2 on: November 20, 2008, 08:13:15 am »
Welcome, new member.  Sorry about your diagnosis!  I am sure you will have a lot of questions about your situation.  You are going to want to arm yourself with as much
knowledge as possible so you can make decisions that you can live with.  The people here on the forum can help you with questions about drs., treatments, and symptoms.  In the end, making the decision about treatment is difficult.  You have to do what feels right to you.  It may swing toward a particular dr. or a certain treatment.

Feel free to ask about anything.  There are no dumb questons.  The people here are compassionate, wise, and witty.  If you are having a bad day, they can cheer you up like nobody else because they know what you are going through.

Keep in touch!

Priscilla
Diagnosed  left AN 8/07/08, 1.9 CM
Surgery 12/10/08 at Methodist Hospital w/Vrabec and Trask for what turned out to be a cpa meningioma.

lori67

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Re: New member, have a relative diagnosed with AN
« Reply #3 on: November 20, 2008, 08:30:13 am »
Hi user222 and welcome.

I think I took your post a little differently than the other members who have already responded - you don't have the AN - you have a relative who does, right?  Just wanted to make sure I had it straight.  I get confused easily!   :D

Anyway, glad you found the site and I'm sure you'll be able to find some good information on all things AN!  I know you'll find everyone here very well informed and supportive, so ask any questions that come to mind.

Hope we can help!
Lori
Right 3cm AN diagnosed 1/2007.  Translab resection 2/20/07 by Dr. David Kaylie and Dr. Karl Hampf at Baptist Hospital in Nashville.  R side deafness, facial nerve paralysis.  Tarsorraphy and tear duct cauterization 5/2007.  BAHA implant 11/8/07. 7-12 nerve jump 9/26/08.

sgerrard

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Re: New member, have a relative diagnosed with AN
« Reply #4 on: November 20, 2008, 08:35:05 am »
Hi 222,

We seem to have had a rash of new members with relatives with an AN. You wouldn't by chance be a daughter of a parent with an AN in Ohio? Had two of those just in the last month or so, for some reason.

You are welcome to gather information here to support your relative and help in the decision making process. Family support is always valuable, and it is great to see people taking the time to help out like you are doing.

Welcome to the forum.

Steve
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 member, have a relative diagnosed with AN
« Reply #5 on: November 20, 2008, 09:23:43 am »
222:

Hello and welcome.  I'm sorry your relative has been diagnosed with an acoustic neuroma but I was pleased to learn that you've found the ANA site and these forums helpful, as that is their intent.  Please visit as often as you wish and encourage your relative to join and post, too.  We understand the unique challenges of an acoustic neuroma and most of us are dealing with them on a daily basis.  That makes these message boards a place to find practical (sometime hard-to-find) information, vent or whatever is needed.  We care and we're here to support AN patients and their families in whatever way we can.  :)

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.

user222

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Re: New member, have a relative diagnosed with AN
« Reply #6 on: November 20, 2008, 04:29:32 pm »
Thank you for your warming reception.Yes a young relative was diagnosed with AN and the size is big,and we trying to find some experts here in europe on acoustic neuroma in UK and in Germany, we have learnt thus far of INI and Dr Sammii.We are more concerned on the preservation of the nerves the facial and the trigeminal.I am to find some information, he's been devastated and unable to do it, and only  20.At least as a family we're by himThank God that AN is a benign tumor.

sgerrard

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Re: New member, have a relative diagnosed with AN
« Reply #7 on: November 20, 2008, 11:19:00 pm »
Maybe 'Dan in Germany' will see your post. You can also search for him, if you go to the main page first, then type that in the search box. I think he considered INI, although I think he went somewhere else in the end. He has posted several times about European hospitals and doctors; here is one of his:
http://anausa.org/forum/index.php?topic=7783.msg82595#msg82595

I hope you are able to help your young relative. I agree, 20 is early in life to have to face having AN surgery. We wish him the very best.

Steve
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.

MAlegant

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Re: New member, have a relative diagnosed with AN
« Reply #8 on: November 21, 2008, 04:46:38 am »
Hey 222,
I had a large-ish tumor that also involved the nerves you mentioned.  Had a successful surgery and am dealing with minor side effects but am otherwise back to living my life.  I wish you the very best luck finding a good team of doctors for your relative. 

And Steve, stop blaming Ohio.  We get enough bad press.   ;D

Best,
Marci
3cmx4cm trigeminal neuroma, involved all the facial nerves, dx July 8, 2008, tx July 22, 2008, home on July 24, 2008. Amazing care at University Hospitals in Cleveland.