Author Topic: next step  (Read 3541 times)

Tracy725

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next step
« on: April 02, 2009, 12:51:22 pm »
Hi everyone,
Thank you for your heartfelt replies to my first post. It's been a few days now since being diagnosed and I'm still up and down alot. It took me a couple of days just to find the courage to come back here.  Still pretty scared. Next Friday the 10th I have an appointment to meet Dr David Foyt at the Capitol District Ear Institue in Albany NY. He comes highly recommended. Has anyone been there? Thank you again for your kindness and prayers and mine are with all of you also.
Tracy

leapyrtwins

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Re: next step
« Reply #1 on: April 02, 2009, 12:58:03 pm »
Tracy -

glad to see we didn't scare you away completely  ;) 

Seriously, there's a lot to digest with an Acoustic Neuroma - not just what it is, but the possible treatments.  Word of advice though - don't let the experiences of others on the forum get to you.  Some of us have had an easy time; some not.  Some of us have had lots of side-effects from treatment; some haven't.  Keep in mind that you are as unique as the rest of us are, and your AN Journey will be unique in itself.

I didn't have surgery in NY - mine was in IL where I live - but there are some excellent doctors in your area or not too far outside of it.  I don't know how far away you are from them, but Drs. Roland and Golfinos have an excellent reputation.  You might want to look into a consultation with them.

Best of luck,

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

kathylittlejohncobb

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Re: next step
« Reply #2 on: April 02, 2009, 01:04:47 pm »
Tracy,
Wishing you the very best on your new journey.  You will have much support from so many people here, so don't hesitate to ask questions.
I am only familiar with the House Institute/House Ear Clinic in Los Angeles (went there from Louisiana for my surgery), but feel sure you will receive good info about physicians in your area. 
I just wanted to give you a "virtual hug" and I will be thinking about you,
Kathy
Retrosigmoid at House/St. Vincent's in Los Angeles 4-4-06; partial hearing saved on AN side;
Dr. Marc Schwartz & Dr. Rick Friedman, my heroes!

msmaggie

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Re: next step
« Reply #3 on: April 02, 2009, 03:11:03 pm »
Tracy,

Don't worry--you'll find your way through all of this. Finding out you have a brain tumor is a major setback . It is okay to freak out....and then start learning about your condition.  As you learn, you will start asking all the right questions, and pretty soon, you have what you need to make decisions.  We are here to help any way we can.  It's the Bible method...seek and ye shall find!  :D

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.

SML

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Re: next step
« Reply #4 on: April 02, 2009, 05:10:59 pm »
Hi Tracy,

Welcome back :)

Your reaction is quite normal for the newly diagnosed.  As you learn more, the emotions will settle down enough for you to know that the decision you make will be the right one for you.

I am two weeks post-op.  I had my surgery at MGH/MEEI in Boston, approximately four hours from Albany on route 90 (The Mass Pike).

If you have any questions, I'd be more than happy to answer the best that I can.

You've got a great support team here within this forum,

Scarlett
SML(Scarlett)-Massachusetts
1.5 cm x 2.5 cm Cystic AN - Right side
Retrosigmoid 3/18/09 at MGH in Boston,MA.
Dr. Barker - Neurosurgeon, MGH - Dr. Lee - Neuro-Otology, MEEI
no facial issues, SSD right side, balance issues to work on.
Outstanding Surgeons, I'm very happy with the results.

Jim Scott

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Re: next step
« Reply #5 on: April 03, 2009, 09:08:37 am »
Tracy ~

Thanks for your kind words and for deciding to come back and post another message.  As others have correctly pointed out, this is always a trying time.  The totally unexpected diagnosis, the fears, concerns and angst that comes from dealing with the unknown.  It's not fun.   

Now is the time to research what you have and how to treat it.  Knowledge shrinks fear and makes it easier to make rational decisions, not decisions based on anxiety over the 'unknown' and the fear that can generate.  Most of the folks that post here are AN 'veterans' and can offer sensible advice and suggestions, answer some non-medical questions and give you the kind of support only someone who has gone through what you're experiencing can offer.  We don't have an answer for every question but we do have some knowledge, lots of compassion and a sense of humor that we hope to be able to share with you, if you'll let us.  I trust that you will and that we'll be seeing more messages from you in the days and weeks to come.  I'm looking forward to that.  :)

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.

cherrypiper

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Re: next step
« Reply #6 on: April 04, 2009, 10:40:21 pm »
ok here's the deal...........BREATHE take a brown paper bag if needed. a book or i-tunes to calm you.

most 99%+ of AN are not cancerous, they are benign. They are usually slow growers too......

learn what you can, but listen for what your Dr. is telling you. the ANA association hads some great pamphlets too............read them.

i see where Jim Scott and Jan already talked with you. they are our walking Britannica's ::) of AN knowledge here.........

you have found a safe place come when you need it............. ::)
10 mm x 2.4mm surgery date 12/03/07

glad to be here

sgerrard

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Re: next step
« Reply #7 on: April 05, 2009, 12:30:40 am »
It took me a couple of days just to find the courage to come back here. 

Tracy, I hope you don't feel you need courage to come and post here. Post whenever you have a question or need, no matter what. That's what we're here for.

Quote
I have an appointment to meet Dr David Foyt at the Capitol District Ear Institute in Albany NY. He comes highly recommended.

I Googled him, since that is what I do. Among other things, he has made the news for operating on middle ear bones with a laser, and has published work with Dr. Slattery at the House Ear Institute. That speaks well for him.

Sure, it's brain surgery and scary stuff like that, but it will turn out okay. I hope your appointment next Friday goes well.

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.

suboo73

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Re: next step
« Reply #8 on: April 05, 2009, 07:52:43 am »
Tracy,  A belated welcome to the Forum! (But sorry you had to join this club.) 

Please - take a DEEP BREATH, as cherrypiper suggests, and then research, research, research! 
When you get tired of it all, just take a break, walk away, do something relaxing, fun and different.

My sister and i are both here, diagnosed 6 months apart.  (We are each on our own journey, and no 2 are alike, even for sisters!)  I am not done researching and have been to several major medical centers.  In fact, last Friday i was asked by a resident why i went to another facility...well, because it is my life, my brain, and i want more than 1 opinion!  Some are fortunate to find a truly caring, gifted doctor and facility quickly and easily.  [Me, i can't even buy a tv or set of dishes without looking at all the options!]

You will find your way as you go along - just keep posting when you have questions - this place is the best EVER, and the people are indescribably FANTASTIC.
Thoughts and prayers to you.

Sincerely,
Sue

PS - My husband was out of town when i read the MRI report - i didn't want to freak him out, so i called my sister. 
We are here for you.  If you want to talk on the phone, there is a whole list of people willing to do that!  Also, you can send a PM anytime.  Take care.
« Last Edit: April 05, 2009, 07:55:24 am by suboo73 »
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

lori67

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Re: next step
« Reply #9 on: April 05, 2009, 11:45:24 am »
Hi Tracy and welcome.

I don't know that particular doctor, but I used to work at Albany Medical Center Hospital, so I will ask around and see if any of my friends who still work there know about him.

I would ask how many of the particular treatments he is recommending for you he's done, as I know they don't typically do a lot of AN surgeries at AMCH, and that's probably where that group does their thing.  I also have connections at St. Peter's, but I know they don't do a lot there either.  Either way, I'll ask around to see if anyone has any input on him.

The good thing is, you're in a good location to get multiple opinions if you decide to - not too far from Mass. or NYC and some large hospitals.  The important thing is to find the doctor that's right for you and that you feel comfortable with.

Good luck with your appointment and I'll PM you any information I can find on that group of doctors if you like.

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.