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Author Topic: New Person Here!  (Read 4838 times)

Lorbis

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New Person Here!
« on: May 30, 2011, 06:59:50 pm »
I was just diagnosed a few weeks ago with a 16 mm acoustic neuroma on my right side.  I have some hearing loss, tinnitus ( seems like I've always had that ever since one REALLY loud Bruce Springsteen concert 15 years ago :) ), but no balance or facial problems.  I'm really hoping to be a candidate for Gamma Knife ( I think).  I have my first specialist visit on Thursday in New York ( Dr. Roland), and another one scheduled for July 7 in Philadelphia with Dr. Bigelow.  Just wanted to introduce myself-I've been reading these boards religiously for the past two weeks and have found so much helpful information!  Thank you!!

Laurie in NJ
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Kaybo

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Re: New Person Here!
« Reply #1 on: May 30, 2011, 07:16:10 pm »
Hi Laurie and WELCOME!!

Feel free to make yourself at home and ask us any questions...that is what we are here for!!

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!

lori67

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Re: New Person Here!
« Reply #2 on: May 30, 2011, 07:25:25 pm »
Hi Laurie IN NJ - from Lori FROM NJ!   ;D

I've heard good things about both doctors you mentioned.  Hope your visits with them go well.

Just wanted to say welcome to the forum!  Sorry you got such a lasting souvenir from The Boss!   ;)

Lori
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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.

CHD63

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Re: New Person Here!
« Reply #3 on: May 30, 2011, 09:06:58 pm »
Hi Laurie and welcome to this forum .....

Sounds like you are off to a good start getting medical opinions regarding treatment.  If you have not already done so, be sure to send for the free information packet from the ANA.  See:  http://www.anausa.org/index.php?option=com_aicontactsafe&view=message&layout=message&pf=4&Itemid=195
These materials contain a wealth of information and much reassurance.

Best thoughts and let us know how we can help.

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

Suu

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Re: New Person Here!
« Reply #4 on: May 30, 2011, 09:24:13 pm »
Hi from me too, Laurie.

You surely came to the right place for advice, help, and friendship.  I'll definitely be watching for the outcome of your 2 visits.

Hugs,

♥ ´)
.•´¸.•*´¨) ¸.•♥ ¨)
(,.•´ (.♥ •´ *Suu 

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4cm Left side AN Translab August 18th 2010
Facial nerve not working
Nerve conduction Jan '11 Repeated 23rd May '11
SSD left side
5 ops in 6 weeks to fix CSF leaks
Tarsorrhaphy 9 Mar '11 Extended 26 Aug '13
Sling Thur 16 June '11
12/7 nerve graft 9 Feb '12

jaylogs

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Re: New Person Here!
« Reply #5 on: May 30, 2011, 09:48:10 pm »
Hi Laurie!!  I am so glad you found this forum...as you've no doubt have already found that there's a wealth of information here.  A lot of experiences have been documented here and it's helped a lot of people, myself included. It's funny you mentioned about that concert, I could have sworn that my tinnitus was caused by an unusually long dental procedure years ago.  I'd much rather had it started by the boss than a dental hygenist...but oh well! :) Anyways, I hope your GK appointment goes well, let us know how it does go, ok? Take care and again, welcome!
Jay
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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

suboo73

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Re: New Person Here!
« Reply #6 on: May 31, 2011, 03:39:23 am »
Welcome Laurie!

Glad you found this Forum - the folks here are FANTASTIC!  :)
Sounds like you have some appointments lined up with great docs...best of luck with those!
My sister has seen Dr. Bigelow and speaks very highly of him.

Prayers all around that you find the answers you need.

Sincerely,
Sue
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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

leapyrtwins

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Re: New Person Here!
« Reply #7 on: May 31, 2011, 05:38:53 am »
Welcome to the Forum, Laurie!

Jan
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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

tenai98

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Re: New Person Here!
« Reply #8 on: May 31, 2011, 05:51:29 am »
welcome Lauire to the forum.
JO
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14mmX11mmX11mm left ear
TRANSLAB 04/07/09 2cms at time of surgery
Dr. Benoit and Schramm, Ottawa Civic Campus
SSD ,some facial numbness
Baha surgery sept 22/09
residual tumor 13mmX7mmX8mm
2016 new growth.  25mmX21mmX22mm
cyberknife on June 7

Itheus

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Re: New Person Here!
« Reply #9 on: May 31, 2011, 01:50:57 pm »
Welcome Laurie!

I'm somewhat of a newbie myself, and have already found these boards IMMENSELY helpful.
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Jim Scott

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Re: New Person Here!
« Reply #10 on: May 31, 2011, 02:49:19 pm »
Hi, Laurie ~

As you can see, these forums are populated by a lot of affable folks eager to be of help to you, as a recently-diagnosed AN patient.  Allow me to jump on the welcome wagon, too and wish you a good consult experience with doctors Roland & Bigelow.  They come highly recommended.  Looking forward to your updates as things progress.

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.

latirus

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Re: New Person Here!
« Reply #11 on: May 31, 2011, 04:44:06 pm »
 I have an AN about the same size as yours with about the same symptoms.  I thought I should do surgery at first - front-load the risk and then be rid of it.  On the other hand,  a minimum 8-hour operation and certain loss of one ear is hard to decide for if it might be avoidable.  After seeing 3 doctors at the same hospital, one surgeon, one radiation specialist, and one who does both, it was 2 to 1 (sort of - doctors don't tell you what to do any more) for GN.  I have never been sure that this is the correct choice and indeed cannot be sure about any of it - it's all statistics and you don't know which one you'll be.  I suppose I decided to gamble that the GN might work, even though I'm a natural pessimist about some things.  GN is day after tomorrow.  I   wish you luck
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JAndrews

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Re: New Person Here!
« Reply #12 on: May 31, 2011, 06:24:13 pm »
Dr. Roland was as highly recommended as Dr. Brackmann was to me:) Good luck to you.
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2.5cm x2.0cm cerebellapontine angle meningioma. 100% removal 2/2009. House Ear Institute. Dr Brackmann and Dr. Schwartz. SSD right ear. No balance problems except when really tired, no headaches. Transear hearing aide made no difference, tried it for 4 months.

ombrerose4

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Re: New Person Here!
« Reply #13 on: May 31, 2011, 08:12:56 pm »
Hi Laurie,

Glad you found this wonderful forum. We are here to support you, answer questions, make you laugh, let you know that it's okay to cry, and listen:) :) :)
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Retrosigmoid 9/24/09
AN 2.4+ cm left side
Mount Sinai Hospital, NYC (Dr. Bederson and Dr. Choe)
BAHA surgery 1/4/2010

Lorbis

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Re: New Person Here!
« Reply #14 on: May 31, 2011, 08:18:31 pm »
Thank you all for your warm welcome! I am learning so much here. Latirus, good luck with your procedure.  I'll
 be interested to see how it all goes for you.
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