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Author Topic: My first post  (Read 3680 times)

davematern

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My first post
« on: March 31, 2010, 09:08:46 pm »
Hello to all.  This is my first writing since diagnosis on 3/24/10. This site is terrific, lots of great information and advice! I see Dr. Mangham in Seattle on 4/22/10 to discuss possibilities for treatment options. Lots of hearing loss left side, world class tinnitus, balance was iffy, but seems a bit better now.  The world was spinning right to left for a while, but that seems a little better. AN is approx. 11x2.5x3 mm. I am not too nervous as of yet, just very apprehensive. Knowing more about it all is extremely helpful. After reading through a lot of postings, it is nice to know there are so many people out there with good advice on what to do and how to go about it. I will maintain a positive attitude from now on, and hopefully return to others some positive feelings and good advice when it is my turn to do so. In the meantime, all the best to everyone!!       Dave in Walla Walla
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Kaybo

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Re: My first post
« Reply #1 on: March 31, 2010, 09:13:51 pm »
Hi Dave & Welcome!  Sorry that you had to join us (AN) but glad you are here!!  Ask anything you want - that's 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!

sunfish

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Re: My first post
« Reply #2 on: April 01, 2010, 07:47:18 am »
Sorry about the AN!!  I was diagnosed in January, and just finished treatment.  I couldn't have made my treatment decision so easily if I hadn't had this site, these people, etc.  Be sure to get the information packet - very detailed info.  Also, there's a great list of research abstracts (brief descriptions of various studies) - I joined ANA, don't know if you have to be a member to access these.  To me, my choice was clear after reading these, along with the other info.  Let us know how it's going!
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Rt. side 14mm x 11mm near brain stem
Severe higher frequency hearing loss
I use a hearing aid (Dot 20 by Resound)
Balance issues improving!!!!
Cyberknife March17, 2010
Roper Hospital Cancer Center, Charleston, SC

james e

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  • 75years, 1.7cm, trans lab Mar 2010, BAHA 5
Re: My first post
« Reply #3 on: April 01, 2010, 08:34:07 am »
Sorry to have you join us, but this is a great site, and the great people here will help YOU to make up your own mind how to handle your treatment. All of the information is here for you to learn from our experiences, and for you to decide what is best for you and your family. I just had my surgery on the March 24th. I started out to watch and wait, then chose radiation, then chose surgery. Anyone of those options would still be open options to me today, but after 3 months I decided to have the surgery. My first piece of advice is for you to relax, and take a lot of time to gather information here. Good luck to you.

James
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lori67

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Re: My first post
« Reply #4 on: April 01, 2010, 08:47:00 am »
Hi and welcome, Dave in Walla Walla!  I've never known anyone from Walla Walla before!  Now I can say I do!   ;D

A positive attitude will come in very handy!  And if it ever gets to be "not so positive", we'll be here to prod you along!

Lori in Virginia Beach.... that just doesn't sound as cool as Walla Walla.
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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.

Pooter

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Re: My first post
« Reply #5 on: April 01, 2010, 09:43:27 am »
Dave,

Welcome to our little slice of the internet..  Great people, great advice and more to the point non-judgemental.  Whatever choice you make for treatment (or not), we'll suport your decision 100%..

Regards,
Brian
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Diagnosed 4/10/08 - 3cm Right AN
12hr retrosig 5/8/08 w/Drs Vrabec and Trask in Houston, Tx
Some facial paralysis post-op but most movement is back, some tinitus.  SSD on right.
Story documented here:  http://briansbrainbooger.blogspot.com/

"I must be having fun all wrong!"  - Roger Creager

carter

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Re: My first post
« Reply #6 on: April 01, 2010, 01:13:18 pm »
hello and welcome via the internet ---- i meet too many people here ...  i wish the club was much smaller ...  but since you got in - welcome!


carter
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Diagnosed in fall of 2008 with 1.6 * 2.9cm AN on left side. 

Scheduled CK at Oklahoma Cyber Knife in December, 2008 and decided not to proceede on 2nd date that CK was scheduled.  I fired them.

CK performed at St John's Hospital (Tulsa)Jan 2009

Sue

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  • Que sera, sera
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Re: My first post
« Reply #7 on: April 01, 2010, 02:30:38 pm »
Hi Dave in Walla Walla,

Finally got to Walla Walla 2 years ago this summer.  Nice drive, neat town.

Hope everything goes okay for you.

Sue in Vancouver, WA
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Sue in Vancouver, USA
 2 cm Left side
Diagnosed 3/13/06 GK 4-18-06
Gamma Knife Center of Oregon
My Blog, where you can read my story.


http://suecollins-blog.blogspot.com/2010/02/hello.html


The only good tumor be a dead tumor. Which it's becoming. Necrosis!
Poet Lorry-ate of Goode

Jim Scott

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Re: My first post
« Reply #8 on: April 01, 2010, 03:43:34 pm »
Hi, Dave ~

I see you've been ably met by our virtual ANA Welcome Wagon so I'll just add my welcome and hope that your positive attitude will remain intact as it will serve you well in the months ahead.  :)

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.

Kate B

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Re: My first post
« Reply #9 on: April 01, 2010, 08:30:39 pm »
Hi Dave,

I am a believer in getting more than one opinion. Each doctor I saw gave me different information to consider.  As you begin your research take advantage of the fact that House Ear Institute (highly regarded facillity) will read your MRI's for free.

The doctor will spend as much time as you want answering your questions with a follow up phone call.

From the House Ear Clinic Website:
House Ear Clinic CONSULTATIONS

If you, a family member, or someone you know has been diagnosed with an acoustic neuroma, you may consult with a doctor from the House Ear Clinic team. We will be happy to review the MRI scans and audiogram and speak with you by telephone (we must have a copy of the actual MRI film, reports are not sufficient by themselves).

Send the MRI scans by express delivery (be sure that you are able to track the package) to:

House Ear Clinic
Attn: Acoustic Neuroma Website Consultations
2100 W. Third Street, 1st Floor
Los Angeles, CA 90057

You can expect to hear from a House Ear Clinic physician within 24 hours of our receipt of your information. You may also call or fax a House Ear Clinic physician at:

Telephone: (213) 483-9930
FAX: (213) 484-5900
All the best to you,
Kate



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Kate
Middle Fossa Surgery
@ House Ear Institute with
Dr. Brackmann, Dr. Hitselberger
November 2001
1.5 right sided AN

Please visit http://anworld.com/

Lizard

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Re: My first post
« Reply #10 on: April 01, 2010, 08:34:29 pm »
Welcome Dave and again sorry you are joining us, but please ask anything.  I'm sure you are going through quite a bit right now and keep us posted on your treatment decisions and recommendations.

Liz    ;)
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Left AN 2.5CM,retrosigmoid 11/2008, second surgery to repair CSF leak. 
Headaches began immediately.  Dr. Ducic occipital nerve resection, December 2011!!!!!

"When you come to the end of your rope, tie a knot and hang on"
-Franklin D. Roosevelt

Jill Marie

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Re: My first post
« Reply #11 on: April 01, 2010, 10:41:53 pm »
Hi Dave,

Just wanted to let you know that Dr. Mangham did my surgery in 1992, at the time my local doctor told me that he was the best in the NW.  I live in Spokane.  Having never met or spoken with Dr. Mangham he offered to do my surgery for whatever the Insurance Co. would except as he was out of net work, he got the hospital, etc. to except what the Insurance would pay also. I never saw the whole bill and never paid a penny!   I'm really grateful that he did that as the doctor they wanted me to see had only been doing AN's for a year, to top it off I ended up having surgery for a Facial Neuroma which the other doctor wasn't qualified for.  I only found out it was a FN not an AN the day before surgery. 

Let us know how your appointment goes, Jill
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Facial Nerve Neuroma removed 6/15/92 by Dr. Charles Mangham, Seattle Ear Clinic. Deaf/left ear, left eye doesn't water.
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