Author Topic: Newly diagnosed, scared, and depressed  (Read 4344 times)

cherrypiper

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Re: Newly diagnosed, scared, and depressed
« Reply #15 on: July 04, 2009, 03:42:40 pm »
the younger you are , the more i'd recommend gamma knife. why? cause the facial nerve issues especially for young women . us old guys can get away with looking "scholarly" as my surgeon put it  lol.

i had tinnitis too and no auditory function at all on my AN side. i picked surgery because if gamma knife doesn't work, 6 months later they find out from another MRI, and you either re do gamma or do surgery then.

plus being 56 at the time of my surgery 19 months ago, aging more didn't seem all that good from a body perspective, but you're young.

my tumor was all over my facial nerve, number 7 i think it is. i still have residual effects. but its nothing like it was 6 months ago. BUT that first couple months i looked like a stroke or Bell's palsy patient.

the long term effects i guess is an issue , but being an engineer b4 being a college prof, i kinda think they'll handle that better then they can now anyway.

i been to our local AN support group and folks who had this done 15 , 20 years ago marvel at me and my face   LOL.

oh by the way my tumor was about the same size as yours 10.5 x 2.5 . almond shaped and about as big as a big almond
10 mm x 2.4mm surgery date 12/03/07

glad to be here

lori67

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Re: Newly diagnosed, scared, and depressed
« Reply #16 on: July 04, 2009, 09:00:46 pm »
Hi YJ and welcome.

I don't have any doctor suggestions to offer, but just wanted to say hello and that I LOVE the Portland area!  If you need some company - let me know - it would be worth the long drive from TN for some good lobstah!  And it might make you feel better too!

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.

suboo73

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Re: Newly diagnosed, scared, and depressed
« Reply #17 on: July 05, 2009, 05:03:37 am »
Hi YJ!  Sorry you had to join this group, but as you are already finding out, there are FANTASTIC FOLKS here!   ;D
I cannot answer your surgery questions, as i am still in W & W myself. 

Did you research with House Institute?  I believe you can send your pics there for a 2nd opinion.
I am considering CK myself, and going to Stanford.  Everyone says that as you are making your decisions, to 'go with your gut.'

My thoughts and prayers are with you today.  As others have said, you are not alone.
Take a deep breath and take your time researching.

Sincerely,
Sue
suboo73
Little sister to Bigsister!
9mm X 6mm X 5mm
Misdiagnosed 12+ years?
Diagnosed Sept. 2008/MRI 4/09/MRI 12/09/MRI 1/21/11
Continued W & W

Crazycat

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Re: Newly diagnosed, scared, and depressed
« Reply #18 on: July 05, 2009, 11:53:58 am »
Yes, what Yoga and Keri said!
5cm x 5cm left-side A.N. partially removed via Middle Fossa 9/21/2005 @ Mass General. 
Compounded by hydrocephalus. Shunt installed 8/10/2005.
Dr. Fred Barker - Neurosurgeon and Dr. Michael McKenna - Neurotologist.

krbonner

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Re: Newly diagnosed, scared, and depressed
« Reply #19 on: July 06, 2009, 12:02:14 pm »
Welcome. I'm glad you found us.

I see Dr. Michael McKenna at Mass Eye & Ear, as do many of us in the Boston area. I had surgery with him and Dr. Barker at Mass General almost three years ago now. I still see McKenna for follow up. He's definitely one of the areas experts on ANs. There are also several options for radiation treatment - cyberknife at Beth Israel, gamma knife with Dr. Noren in Providence, and others that I'm forgetting.

I chose surgery, although you'll find that the choice of treatment is very individual and depends greatly on your unique situation. After a year of watch-and-wait (on McKenna's recommendation) we found my AN to be growing much faster than expected and so had to be dealt with sooner rather than later. For a variety of reasons, I chose surgery.  (Let me know if you'd like more details.)

It sounds like you're dealing with a lot right now. Take things one little step at a time. You will get through this. 

Katie
diagnosed June 2005
2.3cmx1.6cmx1.4cm left AN
translab Sept 13, 2006; Drs. McKenna and Barker in MA (MEEI/MGH)

ppearl214

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Re: Newly diagnosed, scared, and depressed
« Reply #20 on: July 06, 2009, 03:07:16 pm »
Hi and welcome. Well, I'm beside myself as I'm usually one of the first to chime in, esp. for someone here locally to New England .... so, shame on me!

I'm glad you found us here and hoping the info that all have shared is helpful. Like many that already posted, I am located in metro Boston and was treated with Cyberknife radio-surgery (radiation) at Beth Israel Deaconess in Boston.  My personal goal was hearing preservation... thus, the CK team did a 5 day approach with me.... and now, over 3 yrs later and based on my last hearing test (this past Feb), they saved my hearing.... I am at the same level of hearing I was before the CK treatment.

so, with that said, please accept my "welcome" to you and if you need assistance with researching info on the site (best way is to use the "Search" option at the top of the Discussion forum home page), just let us know.

Again, welcome.
Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"