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Author Topic: Finally posting from Central Texas  (Read 2160 times)

JulieE

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Finally posting from Central Texas
« on: July 01, 2008, 10:19:42 pm »
Well, I found this forum 6 weeks after being diagnosed, and a mere 5 weeks prior to translab surgery for a 2.7 cm AN.
I had come searching for any feedback on the team here in Austin, Texas - and only had one hit on the name of Dr. Kemper.
I know they (Drs. Craig Kemper and James Kemper) have done this surgery multiple times and I was dismayed that I couldn't find more on them.  I wish there were a big data base with tumor size/action/results, but until then this forum is it. I understand each tumor is a unique animal and this is not to be considered an endorsement, but I am posting this so that others in Central Texas can have some feedback.  Feel free to contact me for further details, but here is my blog, which talks to surgery 3 months ago thru now: http://julieerlon.blogspot.com/  Ignore the fluff posted lately and go to Mar. 27th thru April 2nd for reality show, and watch for upcoming if interested in outcome of MRI Taken today...
Grateful for the Forum,
Jules
« Last Edit: July 05, 2008, 11:08:48 am by JulieE »
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Omaschwannoma

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Re: Finally posting from Central Texas
« Reply #1 on: July 02, 2008, 06:04:07 am »
Read your "blog" and very glad you are doing so well in such a short period of time.  Welcome to your "new" normal and adopting the "simple" lifestyle is a good thing. 
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1/05 Retrosigmoid 1.5cm AN left ear, SSD
2/08 Labyrinthectomy left ear 
Dr. Patrick Antonelli Shands at University of Florida, Gainesville, FL
12/09 diagnosis of semicircular canal dehiscence right ear

Jim Scott

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Re: Finally posting from Central Texas
« Reply #2 on: July 02, 2008, 07:06:04 am »
Hi, Julie:

Thanks for joining our membership and sharing your story.  Your blog was very interesting and informative.

I'm pleased to learn that your surgery and recovery has gone so well and hope to see more from you here in the future.

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.

pswift00

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Re: Finally posting from Central Texas
« Reply #3 on: July 02, 2008, 07:14:17 am »
Julie-

Congrats on your surgery. It sounds like a success.  Did you have translab surgery?  Mine's 2.9 cm, and I will probably go with translab.  I can deal with the hearing loss, but the thought of facial paralysis scares the hell out of me.  your story gives me lots of hope, though!
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leapyrtwins

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Re: Finally posting from Central Texas
« Reply #4 on: July 02, 2008, 07:14:50 am »
Julie -

thank you for posting.

Lots of people come here looking for input on doctors in their area and there's not always a lot of information on that.  Newbies and those who are watching & waiting in your area, will find your information very helpful.  Perhaps if more patients like you post here - even just once or twice - we will have that data base that you suggest.

I'm glad your recovery has been so positive; nice blog  :)

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

Debbi

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Re: Finally posting from Central Texas
« Reply #5 on: July 02, 2008, 08:14:18 am »
Julie-

Loved reading your blog!  I, too, started a blog when this all happened (see below in my signature line)- what a great way to keep in touch wth family, and to sort out my own emotions and feelings.  Sounds like you are healing very well and have lots of family support.  Your husband sounds a lot like mine, actually!  ;D

Hope your progress continues to go smoothly - thanks for joining us here.

Debbi - 2 months post op

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Debbi - diagnosed March 4, 2008 
2.4 cm Right Side AN
Translab April 30, 2008 at NYU with Drs. Golfinos and Roland
SSD Right ear, Mild synkinesis and facial nerve damage
BAHA "installed" Feb 2011 by Dr. Cosetti @ NYU

http://debsanadventure.blogspot.com

Kaybo

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Re: Finally posting from Central Texas
« Reply #6 on: July 02, 2008, 08:29:46 am »
Julie~
I left a comment on your blog - thanks for sharing!  ;D

K
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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!

satman

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Re: Finally posting from Central Texas
« Reply #7 on: July 02, 2008, 01:26:11 pm »
hey jules,greetings from dallas.
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kicked my little 8cm buddy to the curb-c ya !

JulieE

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Re: Finally posting from Central Texas
« Reply #8 on: July 05, 2008, 11:26:25 am »
Thank you for the replies everyone.  In returning to the website and reading them I found something scary: that I type like I hear - Just one crucial letter off!  Hence, "data base" became "date base", which would have an entirely different meaning! Anyway, it's been modified and I look forward to coming to the forum to browse around when there is time.  I see the support you give newly diagnosed folks and I think you're all wonderful.  Keep up the good work,
Jules
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