Author Topic: how to find the best surgeon  (Read 10528 times)

Jim Scott

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Re: how to find the best surgeon
« Reply #15 on: May 27, 2008, 04:32:10 pm »
Hi, maggiemae:

I'm sorry that you have a reason to join us (an AN diagnosis) but welcome to the forum.  :)

Of course the initial AN diagnosis is upsetting and there is so much to learn and absorb.  The main thing to hang onto is that the tumor is benign - and treatable.  You have as much chance of dying from this as you do winning Powerballâ„¢.  With your tiny AN, you'll likely play 'Watch-and-Wait' for awhile but still, being informed is critical to making future decisions regarding treatment.  Your facility and physician have excellent reputations but a second opinion is always prudent.  Just ask the surgeon (politely, of course) about his AN surgical experience and, most importantly, his outcomes.  You seem pretty focussed and pragmatic so I think you'll get through this O.K. 

Thanks for posting.  Best wishes regarding your future decisions.

Jim
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.

Jim Scott

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Re: how to find the best surgeon
« Reply #16 on: May 27, 2008, 04:34:47 pm »
Hi, Coffeylady:

Please accept my welcome to the site and the forum.  Your surgery date is already on our community calendar.  Please visit us often and keep us up-to-date on your progress, pre and post surgery.

Thanks.  :)

Jim
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.

leapyrtwins

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Re: how to find the best surgeon
« Reply #17 on: May 27, 2008, 10:31:55 pm »
Sharon -

glad to hear your AN is small.  I can understand not wanting to watch and wait - there are those who do and are very comfortable with that option.  But it's a personal choice and I don't think I'd have the patience for it.  I'd worry too much.

I took the liberty of putting your surgery on the AN Calendar since you are a newbie and I didn't know if you were aware of our calendar.  I hope you don't mind  :)

As I'm sure you realize, Translab will leave you single-side deaf (SSD).  Lots of AN patients learn to live with SSD, but there are two excellent options - the BAHA and the Transear. 

I had the BAHA surgery on 3/4/08 and will get my processor on 6/4  ;D  If at some point you have questions about the BAHA, just let me know. 

Jan
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

4cm in Pacific Northwest

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Re: how to find the best surgeon
« Reply #18 on: May 27, 2008, 11:00:10 pm »
Coffeylady,

Welcome!

You have landed a great website and a forum full of some wonderfully supportive and positive people.

There is much to learn about AN tumors. These are slow growing so take the time you need to become informed. Ask lots of questions. There is a wealth of people here to give you answers based on their own first hand experience… and what they too have learned from others.

Daisy Head Mazy
 


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!

ppearl214

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Re: how to find the best surgeon
« Reply #19 on: May 28, 2008, 06:13:10 am »
Hi sharon and welcome.... good to see you here seeking out info... as you can see, many here to share thoughts/experiences re: our AN journeys. There is a VERY large contingency of New England based AN'ers... (myself included) and here to help.

Again, welcome.
Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Kaybo

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Re: how to find the best surgeon
« Reply #20 on: May 28, 2008, 07:55:48 am »
Hello & WELCOME Newbies!!

Just as everyone has said, we are here for you.  Feel free to ask any questions that you might have and we will do our best to answer them from our AN experiences!  Wish we didn't "meet" this way, but be glad this group is here!  When I had my surgery, there was NOTHING like this out there - I was pretty much all by myself (as far as talking w/ someone that had BEEN there)!

K
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!

cmp

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Re: how to find the best surgeon
« Reply #21 on: May 28, 2008, 10:58:51 am »
Thanks for the support, Sharon! I'll be posting a full report as soon as I'm able!

Carrie
5 cm AN surgery, Shands Hospital, FL, Dr Albert Rhoton, 1988; VII-XII anastamosis for right-sided facial palsy 1989; diagnosed Feb 2008 w/ 1.8 cm recurrence; drs McKenna & Martuza; surgery rescheduled for 6/24/08!

coffeylady

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Re: how to find the best surgeon
« Reply #22 on: May 28, 2008, 02:50:05 pm »
Jan and Everyone

Thank you so much for making me feel so welcome.  And, no I don't mind that you have added me to the calendar  :D.  It is just nice to know I am not alone and have the advice and can gain from the experience of so many people who have gone, and are going through the same journey. 

The tinnitus is getting to a higher frequency (I am afraid dogs will be following me soon) and the passed week or so I get clicking, kind of like morse code.  My husband looked at me perplexed a few days ago and I told him I was receiving some type of message that I was trying to decode - then tried to explain the ringing and clicking - it's just too hard to explain to someone not going through the same thing.

Sharon :D


Debbi

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Re: how to find the best surgeon
« Reply #23 on: May 28, 2008, 02:53:54 pm »
Hi Sharon-

Well, keep that great sense of humor!  I'll tell you that a sense of humor is key in getting through the rough patches, wierd noises and all.  Hang in there, and come back often!

Debbi
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

leapyrtwins

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Re: how to find the best surgeon
« Reply #24 on: May 28, 2008, 04:17:25 pm »
Sharon -

it's obvious that your sense of humor fits right in with most of us here  :D

Dogs following you - very funny!

Jan
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

sgerrard

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Re: how to find the best surgeon
« Reply #25 on: May 28, 2008, 10:51:24 pm »
Yup, Sharon belongs here. The dog bit is funny; I also like decoding the clicks and pops - allien morse code, no doubt. I just can't figure out why they have crickets in the sound proof booth where I get my hearing tested.  ???

Steve

8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

leapyrtwins

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Re: how to find the best surgeon
« Reply #26 on: May 29, 2008, 06:48:23 am »
Steve -

the crickets are to keep you from feeling lonely and claustrophobic (those booths can be so small).  It's probably why crickets are also sometimes present in MRI tubes  :D

Jan
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

coffeylady

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Re: how to find the best surgeon
« Reply #27 on: May 29, 2008, 11:55:07 am »
Sense of humor is key.  Life is way too short to take yourself too seriously

My MRI is Scheduled for July 2nd and you can bet that I will be looking around for those crickets.  Actually not a big fan of the MRI, so I will probably have a face cloth over my face, it got me through the first time   ;)

Sharon


leapyrtwins

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Re: how to find the best surgeon
« Reply #28 on: May 29, 2008, 12:54:49 pm »
Sense of humor is key.  Life is way too short to take yourself too seriously


Absolutely  ;D
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: how to find the best surgeon
« Reply #29 on: May 29, 2008, 01:57:53 pm »
And, if the face cloth doesn't work - go straight for the Valium!  Then you just won't care...  ;D

Debbi
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