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Author Topic: Moving from General Inquiries to Pre Treatment Options...oh how fun this all is!  (Read 9984 times)

jaylogs

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Moving from General Inquiries to Pre Treatment Options...oh how fun this all is!
« on: October 14, 2009, 06:33:56 pm »
Greetings fellow AN'ers! So, since my last post (where I was wrongly told I had an 8cm AN as opposed to 8mm) I've been getting different opinions. The first neuro otologist said translab lab was the way to go beings my hearing was pretty far gone. Then I got the famous Dr. Brackmann's advice to do middle fossa approach. Today I went to BNI (Barrow Neurological) with Dr. Weisskapf and he too suggest translab.  I am about 96.3% for going translab at this point. I don't want to do FSR for various reasons. I've researched every treatment option to death (Like I am sure most people on here have :) ) and I think that's what I am going to do. I have an appointment next month with Dr. Spetzler (neurosurgeon) and we'll go from there.  I feel pretty good about this decison, I really don't have a heartache about losing the hearing, I just want it all to be as complication-free as possible.  I've read on these discussion forums that there is no more "right" decision than the one that you make for yourself regarding these AN's, and now I am starting to feel that way now.  Thank you all for posting your positive comments on my other thread and while I take this next step I'll keep checking back from time to time.  I've read a few posts about Barrow's experiences, but some were a bit dated, has anyone out there have either Weisskapf or Spetzler as their doctors in the last year? I'd be interested in hearing from you! Take care all and happy days ahead! :)
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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

Jim Scott

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Re: Moving from General Inquiries to Pre Treatment Options...oh how fun this all is!
« Reply #1 on: October 15, 2009, 12:35:38 pm »
Jay ~

I'm pleased to learn that these forums and the posts have been of use to you for that is the purpose of the message boards.

Although you're absolutely correct about the final decision on the precise treatment/type of surgery, doctor and facility all resting solely in the AN patient's hands, we're happy to help advise and guide you to the best of our collective ability.  I'll look forward to your future updates and your final decision.  Sorry, I don't have any information on BNI - but I'm sure others will be here soon to offer the kind of information you're seeking.   

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.

lori67

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Re: Moving from General Inquiries to Pre Treatment Options...oh how fun this all is!
« Reply #2 on: October 15, 2009, 01:51:06 pm »
Jay,

Sometimes you just have to go with what "feels" right to you.  I'm glad you are pretty close to a decision - for many people, that's the hardest part!

I don't have any first hand experience on Barrow's but I know there have been some forum members that were there not too long ago, so hopefully they'll chime in here.

Keep us posted!
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.

epc1970

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Re: Moving from General Inquiries to Pre Treatment Options...oh how fun this all is!
« Reply #3 on: October 15, 2009, 04:50:44 pm »
And soon Jay you will move to Post treatment!
Erin
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jaylogs

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Re: Moving from General Inquiries to Pre Treatment Options...oh how fun this all is!
« Reply #4 on: October 21, 2009, 08:24:28 am »
Thanks again for all the support and I go through this process! So I did finally make a decision, I am going to get my Middle Fossi done at House in LA, by Dr. Brackmann!  Now I just got to get the surgery scheduled, and they'll be calling me today about all that.  As soon as I know, I'll let you all know...woohoo! :)
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

opp2

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Re: Moving from General Inquiries to Pre Treatment Options...oh how fun this all is!
« Reply #5 on: October 21, 2009, 09:47:56 am »
Oh, well done Jay. All the best thought for you from Toronto! (really Brampton, but no one knows where that is!)
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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.

yardtick

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Re: Moving from General Inquiries to Pre Treatment Options...oh how fun this all is!
« Reply #6 on: October 21, 2009, 01:13:47 pm »
I do!!!  Do you know were Stoney Creek is?


Anne Marie

PS  Is this a hi jack?   ;D
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Sept 8/06 Translab
Post surgical headaches, hemifacial spasms and a scar neuroma. 
Our we having fun YET!!! 
Watch & Wait for more fun & games

opp2

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Re: Moving from General Inquiries to Pre Treatment Options...oh how fun this all is!
« Reply #7 on: October 21, 2009, 07:05:26 pm »
mmmm Stoney Creek Dairy  ;D
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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.

tenai98

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Re: Moving from General Inquiries to Pre Treatment Options...oh how fun this all is!
« Reply #8 on: October 22, 2009, 06:24:31 am »
ok I'll play..
I know Toronto and Brampton and Stoney Creek...but do you know Beachburg????? (near Pembroke)(about 130kms west of Ottawa)
 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

ppearl214

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Re: Moving from General Inquiries to Pre Treatment Options...oh how fun this all is!
« Reply #9 on: October 22, 2009, 07:53:51 am »
Quote from: yardtick on October 21, 2009, 01:13:47 pm
PS  Is this a hi jack?   ;D

first time you've been busted, m'dear!  :o  Back on topic, folks :)

Hi Jay
I know of some that have had radiation (Cyberknife) at BNI and one or 2 that had surgery there. I've heard nothing but good out of BNI and you should be in terrific hands there. Great facility from what others have shared with me.  Best wishes during this process... and cheering you on!
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: Moving from General Inquiries to Pre Treatment Options...oh how fun this all is!
« Reply #10 on: October 22, 2009, 08:08:44 pm »
Quote from: tenai98 on October 22, 2009, 06:24:31 am
ok I'll play..
I know Toronto and Brampton and Stoney Creek...but do you know Beachburg????? (near Pembroke)(about 130kms west of Ottawa)
 JO

I was born in Pembroke, and then returned when I was in the Military in 1989  ;D

so yes...I do.
Logged
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.

Denise S

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Re: Moving from General Inquiries to Pre Treatment Options...oh how fun this all is!
« Reply #11 on: October 22, 2009, 08:33:00 pm »
Glad to hear you've made your decision.   Now is the waiting until the surgery.  I've got 2 1/2 weeks until my middle fossa.

Best Wishes,
Denise  :)
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W&W 2 yrs. (due to watching other brain tumor: it's stable)
Left AN:  1.2 cm (kept growing during 2 yr.)MIDDLE FOSSA  11/9/09;  Michigan Ear Institute Dr. Zappia & Pieper
SSD, mild tinnitus, delayed onset of facial paralysis lasting 3-4 weeks, no tears AN side
BAHA surgery 10/2/12 Dr Daniels G.R.,MI

jaylogs

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Re: Moving from General Inquiries to Pre Treatment Options...oh how fun this all is!
« Reply #12 on: October 22, 2009, 10:29:20 pm »
Thank you Phyl for policing this forum! :P Just so you all know, I've set the date for Dec 9th, at House in LA withe Dr. Brackmann and Dr. Schwartz.  Now all I gotta do is wait! :D
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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

Kathy M

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Re: Moving from General Inquiries to Pre Treatment Options...oh how fun this all is!
« Reply #13 on: October 23, 2009, 06:04:22 am »
Congrats on your decision! It feels really good to get that one behind you, doesn't it?  The waiting can be tough, but keep yourself busy, do what feels good, stay active, and surround yourself with positive people.  Best of luck to you!!  December will be here before you know it and then off you'll be to Postie-land.  It's all good stuff.

Kathy
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AN diagnosed 11/14/08, 3+cm, Retrosigmoid 1/13/09, Univ. Hosp., Cincinnati, Drs. Tew and Pensak
no facial nerve or eye issues!
3 more surgeries related to staph infections & osteomylitis over next 13 months.  New diagnosis of breast cancer.  Treatment completed 08/27/10.  Moving on!!!

jaylogs

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Re: Moving from General Inquiries to Pre Treatment Options...oh how fun this all is!
« Reply #14 on: October 23, 2009, 07:30:49 am »
Thank you Kathy! Good golly, I was reading all the crap you have had to go through there in your signature line...and you still say it's all good stuff? That's one thing I've noticed about this forum, it oozes positive thoughts! :)
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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
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