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Author Topic: Forum is an invaluable resource  (Read 4656 times)

MNTim

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Forum is an invaluable resource
« on: March 12, 2011, 08:41:01 am »
I have been using the forum for about a week but dealing with an AN since 8/09.  In the past week I have had access to more valuable advice than all of the past year and a half.  Anyone who is dealing with an AN needs to utilize this resource.

In researching the forum I have found answers to questions that nurses and Drs could not answer. I can only imagine the peace of mind this would have brought if I had utilzed the forum prior.  I think it also benefits those close to you because it reduces the anxiety passed along to them. 

Thanks everyone for participating.  I hope to be able to provide information that assists another one of us.

Tim
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8/31/09 hydrocephulus-emergent drain
9/2/09 5 cm AN debulked, Retro Sig Abbott NW
5/18/10 Second debulk, Retro Sig Abbott NW
1/31/11 Translab, 7/12 Graft Mayo Rochester, MN
2/12/11 Lumbar drain
3/14/11 Eustacian tube packing procedure for CSF leak
2/28/13 Platinum weight & Tarsorrhaphy

ombrerose4

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Re: Forum is an invaluable resource
« Reply #1 on: March 12, 2011, 09:54:51 am »
I agree- this forum is amazing. We have so many people willing to share their wealth of information and knowledge, along with warmth and support. I too wish I had found the forum before my surgery, but thankfully I found it early in my recovery. I don't think I would have made it this far without everyone's support! ;D ;D
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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

Kaybo

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Re: Forum is an invaluable resource
« Reply #2 on: March 12, 2011, 10:51:22 am »
That is exactly why so many of us stick around - to try to help & support others! Thanks for the reaffirming words!

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: Forum is an invaluable resource
« Reply #3 on: March 12, 2011, 12:05:16 pm »
Information from your doctor is wonderful, but nothing like information from someone who's "been there - done that"!   ;D

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.

Jim Scott

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Re: Forum is an invaluable resource
« Reply #4 on: March 12, 2011, 05:12:18 pm »
Tim ~

Thanks for your generous words of appreciation for the ANA discussion forums.   

It's ironic that just when I start to think that perhaps, after 5 years of posting, it might be time for me to think about 'moving on', we get an encouraging post such as yours that validates not only the mission of the forums but reaffirms my reasons for sticking with them even as my AN experience recedes into the mists of time.  For that, alone, you have my gratitude. 

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.

CHD63

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Re: Forum is an invaluable resource
« Reply #5 on: March 12, 2011, 08:18:49 pm »
Ditto to the others .....

The only reason I have stayed posting is to do what little I can to alleviate some of the terror of newly diagnosed patients ..... as well as to off-set some of the scary things we read about on the Internet.  Medicine has come a long ways in the treatment of acoustic neuromas.

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

Angel-1

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Re: Forum is an invaluable resource
« Reply #6 on: March 12, 2011, 09:58:03 pm »
I totally agree that the forum is great!!!  I thank each and everyone of you on this forum for helping me through the hardest time of my life!!!!!!
You are the BEST!!!! :)     Angela
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Tanslab on 7/8/2010
Total tumor removal
SSD, facial weakness (but facial nerve still intact),
balance issues getting better
Duke University, Dr. David Kaylie, Dr. Allan Friedman & Dr. Fukushima
Age:  44

Suu

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Re: Forum is an invaluable resource
« Reply #7 on: March 12, 2011, 11:04:20 pm »
Hear! hear! I don't think the doctors write down every tiny detail of any particular person's condition pre or post surgery.
Thankyou everyone for the help to stay sane.  ;D
Logged
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

leapyrtwins

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Re: Forum is an invaluable resource
« Reply #8 on: March 13, 2011, 10:53:17 am »
I totally agree!

The Forum has been a God-send to many.

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

jaylogs

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Re: Forum is an invaluable resource
« Reply #9 on: March 13, 2011, 11:17:55 am »
I'll add my .02 worth here and echo the sentiments of everyone by saying this indeed has been a blessing having this as a resource for all things AN.  Thanks to EVERYONE who has posted here in the past!!
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

ppearl214

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Re: Forum is an invaluable resource
« Reply #10 on: March 13, 2011, 11:36:45 am »
Quote from: leapyrtwins on March 13, 2011, 10:53:17 am
The Forum has been a God-send to many.

Aye-men Sista!  :-*  Phyl
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"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

opp2

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Re: Forum is an invaluable resource
« Reply #11 on: March 13, 2011, 01:09:12 pm »
What they said ++++
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Diagn Apr 14 2009 with 2.5 cm lt AN. - numbness in the face and sudden onset headaches accompanied by balance issues. Consults with Drs in S Ontario, California (House) and Vancouver. Picked Dr. Akagami in BC.
Retrosigmoid July 6, 2010, 3.0cm by then. SSD left, no other significant side effects.

moe

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Re: Forum is an invaluable resource
« Reply #12 on: March 15, 2011, 09:13:53 am »
Tim,
Thanks for the kind words about the forum, and I totally agree! I also hang around to help others, and I have made great friends too...
We are like a little family here! Keep posting.
BTW you have been through a lot..... :o
Maureen
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06/06-Translab 3x2.5 vascular L AN- MAMC,Tacoma WA
Facial nerve cut,reanastomosed.Tarsorrhaphy
11/06. Gold weight,tarsorrhaphy reversed
01/08- nerve transposition-(12/7) UW Hospital, Seattle
5/13/10 Gracilis flap surgery UW for smile restoration :)
11/10/10 BAHA 2/23/11 brow lift/canthoplasty

cin605

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Re: Forum is an invaluable resource
« Reply #13 on: March 16, 2011, 11:15:43 am »
Looking for the "Like" button....Love this place....
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2cm removed retrosig 6/26/08
DartmouthHitchcock medical center lebanon,N.H.
43yrs old

cindyj

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Re: Forum is an invaluable resource
« Reply #14 on: March 16, 2011, 11:53:12 am »
Yes, an invaluable resource and now a huge part of my life...can't imagine not hanging around here w/ you guys.  I don't "need" to be here any more, but I "want" to be here :)

Cindy
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rt side 1.5 cm - Translab on 11/07/08 Dr. Friedman & Dr. Schwartz of House Ear Institute,
feeling great!

"Life consists not in holding good cards, but in playing well those you do hold."  Josh Billings
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