Author Topic: New Member - W&Wr since 2006 (but freaking out)  (Read 5866 times)

FLsunshine

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Re: New Member - W&Wr since 2006 (but freaking out)
« Reply #15 on: October 06, 2010, 03:55:11 pm »
Well low and behold... perseverence paid off... believe it or not I'm in Tampa right now.  Already had my MRI at UDI and am meeting with Dr. Danner tomorrow for full review of my case including updated hearing tests. 

Thanks to Clarice and Jan who pushed me to not take no for an answer and get in with a doc as soon as possible.  Once I spoke with their senior Nurse she opened the door right away for me to be seen.  Yea! 

3mm AN diagnosed in 2006
w&w with escalating symptoms
slow growth - at 4mm in 2010

CHD63

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Re: New Member - W&Wr since 2006 (but freaking out)
« Reply #16 on: October 06, 2010, 05:13:56 pm »
Woo Hoo!!  ...... or as my kids say, "You go girl!"  Glad the wheels are in motion.  Let us know what you find out.

Clarice
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

Kaybo

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Re: New Member - W&Wr since 2006 (but freaking out)
« Reply #17 on: October 06, 2010, 08:15:31 pm »
That is SUCH GREAT NEWS!!!  I'm glad they got you in sooner!  Keep us posted!

K   ;D
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!

moe

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Re: New Member - W&Wr since 2006 (but freaking out)
« Reply #18 on: October 06, 2010, 09:53:54 pm »
What a relief for you. Let us know the outcome.
Maureen
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

4cm in Pacific Northwest

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Re: New Member - W&Wr since 2006 (but freaking out)
« Reply #19 on: October 06, 2010, 10:21:53 pm »
Well low and behold... perseverence paid off... believe it or not I'm in Tampa right now.  Already had my MRI at UDI and am meeting with Dr. Danner tomorrow for full review of my case including updated hearing tests. 


GREAT NEWS!!

DHM
4cm Left, 08/22/07 R/S 11+ hr surgery Stanford U, Dr. Robert Jackler, Dr. Griffith Harsh, Canadian fellow Assist. Dr. Sumit Agrawal. SSD, 3/6 on HB facial scale, stick-on-eyeweight worked, 95% eye function@ 6 months. In neuromuscular facial retraining. Balance regained! Recent MRI -tumor receded!

Lizard

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Re: New Member - W&Wr since 2006 (but freaking out)
« Reply #20 on: October 07, 2010, 09:36:28 am »
That's what I like to hear...you have to be your own advocate sometimes : )  In this case it paid off!
 :D
Liz
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

EJTampa

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Re: New Member - W&Wr since 2006 (but freaking out)
« Reply #21 on: October 07, 2010, 04:21:18 pm »
Awesome news Suzanne!  Keep us posted!
-1.3 X 0.8 cm AN in the right cerebellopontine angle extending into the internal auditory canal.
-Retrosigmoid Surgery with Dr. Bartels and Dr. Danner at Tampa General 3/5/2009.
-Had to cut hearing nerve to get "sticky" tumor, so SSD right side.

FLsunshine

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Re: New Member - W&Wr since 2006 (but freaking out)
« Reply #22 on: October 13, 2010, 02:00:02 pm »
Thought I'd send an update to close this thread....

Dr. Danner and his staff in Tampa were absolutely wonderful.  They scheduled an MRI at UDI on the 6th and the next day coordinated other appts such as hearing and functional tests... all prior to my appt with Dr. Danner.  I was so nervous and expecting the worst to see a big fat tumor given all the escalating symptoms I have been experiencing.  But LUCKY ME that my AN grew a little over 1mm in two years time.  So guess my lil' bugger is a slow growing one.  We scoped out a plan for getting my symptoms under control including coordinating my treatment with a local Neurologist near my home in West Palm Beach.  Will be seeing Dr. Danner again next month for VNG testing and help with balance and wonky head issues.  Overall, a great (no FAB-U-LOUS) outcome to all my freaking out and stressing.  Thanks to all of you who read my post and offered guidance and support.  You are the best!
3mm AN diagnosed in 2006
w&w with escalating symptoms
slow growth - at 4mm in 2010

Kaybo

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Re: New Member - W&Wr since 2006 (but freaking out)
« Reply #23 on: October 13, 2010, 03:29:44 pm »
That is GREAT news - so glad that it is all working out & that you have a plan!!

K   ;D
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!

moe

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Re: New Member - W&Wr since 2006 (but freaking out)
« Reply #24 on: October 13, 2010, 08:58:37 pm »
What a relief! I'm wondering if 1 mm of grown can actually make all those symptoms?
Either way, so glad you are getting some help with your issues.
Celebrate!
Maureen
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