Author Topic: New member  (Read 7147 times)

gclark

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New member
« on: March 15, 2007, 06:45:51 pm »
I guess I just became a new member of your group.  I was diagnosed last Friday so I'm still reeling.  I live on Long Island but was referred to a dr in Boston so I have an appt with him on Tuesday.  I've heard he's great but there must be greatness in NY too?  If anybody has any names for me, I'd appreciate it.  This is so scary!

jtd71465

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Re: New member
« Reply #1 on: March 15, 2007, 07:06:00 pm »
I had surgery for my AN on January 10th at NYU Medical center by Dr. Roland (http://www.med.nyu.edu/people/J.Roland.html) and Dr. Golfinos (http://www.med.nyu.edu/people/J.Golfinos.html).  I highly recommend them, great surgeons plus great people, not always what you will find when consulting for a treatment. 

Keep in mind you have options open to you, I took the microsurgical route....I couldn't be more satisfied.  My AN was 1cm X 1cm X 7mm, surgery took 3.5 hours, and my hospital stay was 4 days, I was driving around weeks 3/4 post-op and went back to work after week 6 post-op.  I feel great, no complications.

If you need more information regarding the two individuals I mentioned above please send me an email.

You will be fine...I believe this is the toughest part...it was for me. 

Joe
Right side AN removed 1/10/07 @ NYU Medical Center
Dr's Roland and Golfinos

gclark

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Re: New member
« Reply #2 on: March 15, 2007, 07:26:48 pm »
Thanks, Joe.  Dr. Roland was actually one of the 2 names I have been referred to. It's good to hear something about him from you.  Have you heard of Dr. Selesnick with New York/Cornell Hospital? I sure hope this is the hardest part!

Gail

jtd71465

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Re: New member
« Reply #3 on: March 15, 2007, 07:29:36 pm »
I consulted with Dr Selesnick.  I also sent my MRI to House in LA and consulted with Dr Brackmann.  Dr Roland was my choice for many reasons.

Joe-
Right side AN removed 1/10/07 @ NYU Medical Center
Dr's Roland and Golfinos

gclark

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Re: New member
« Reply #4 on: March 15, 2007, 07:34:22 pm »
I have appts set up with both of them.  Not to sound like I don't know what I'm talking about but I don't...what or who is House?

Thanks,
Gail

jtd71465

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Re: New member
« Reply #5 on: March 15, 2007, 07:54:35 pm »
Dr. Brackmann is probably the "godfather" of the Acoustic Neuroma - http://www.houseearclinic.com/brackmannDE.htm.  and House the facility in LA.

Joe-
Right side AN removed 1/10/07 @ NYU Medical Center
Dr's Roland and Golfinos

ppearl214

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Re: New member
« Reply #6 on: March 15, 2007, 08:41:55 pm »
Dr. Brackmann is probably the "godfather" of the Acoustic Neuroma - http://www.houseearclinic.com/brackmannDE.htm.  and House the facility in LA.

Joe-

Joe, each of our dr's are godfathers to our treatments... ;)

Hi gclark and welcome.  who is it that you are meeting with in Boston? There are many of us here in Boston that have been treated by an array of AN treating physicians locally (microsurgical and radiation/radio-surgery), so we can also share about our "godfathers" as well. :)

We're here to help.

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

jtd71465

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Re: New member
« Reply #7 on: March 15, 2007, 09:13:58 pm »
Phyl-

True.  No disrespect was meant to the other surgeons...

Joe-
Right side AN removed 1/10/07 @ NYU Medical Center
Dr's Roland and Golfinos

gclark

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Re: New member
« Reply #8 on: March 16, 2007, 05:08:45 am »
I'm consulting with Dr. Nadol at Mass Eye & Ear on Tuesday.  Heard of him? Thanks for your input. 

Gail

Omaschwannoma

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Re: New member
« Reply #9 on: March 16, 2007, 07:16:10 am »
I guess I just became a new member of your group.  I was diagnosed last Friday so I'm still reeling.  I live on Long Island but was referred to a dr in Boston so I have an appt with him on Tuesday.  I've heard he's great but there must be greatness in NY too?  If anybody has any names for me, I'd appreciate it.  This is so scary!

Hi "gclark",  I wanted to respond to your request regarding docs in NY.  I went through microsurgery in Gainesville, Florida 2005 where my son (murse, short for male nurse) worked the SICU.  He is intimately involved/knowledgeable with AN's.  He is presently working at NY Presbyterian at Cornell.  I emailed him this a.m. asking him about Dr. Selesnick for you.  I am waiting for his response.  Shall I get in touch with you when I hear or have you already found your "greatness?" 
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

krbonner

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Re: New member
« Reply #10 on: March 16, 2007, 07:40:47 am »
Gail,

Most of us treated through Mass Eye and Ear see Dr. Michael McKenna.  Dr. Nadol is the Chief of Otolaryngology at MEEI, so he's one of the head honchos.  He and McKenna have authored several studies (some even about ANs) together.  I have no experience with Dr. Nadol, though it sounds like he probably knows what he's talking about.  I'd just ask about his personal experience with ANs if you decide to use him as your treating doctor - how many AN patients does he have?  How often does he operate?  Etc., etc.  Just because he's Chief of the department doesn't mean he has the most experience for rare ANs...

Good luck!
Katie
diagnosed June 2005
2.3cmx1.6cmx1.4cm left AN
translab Sept 13, 2006; Drs. McKenna and Barker in MA (MEEI/MGH)

gclark

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Re: New member
« Reply #11 on: March 16, 2007, 05:19:43 pm »
Arushi,

Thanks, I'm just at the beginning of my search so any info about NY doctors would be great.  Thanks so much!

Gail

Desilu

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Re: New member
« Reply #12 on: March 16, 2007, 06:10:26 pm »
Hi Gail,

I can help you with information about Dr. Brackmann at House Ear Clinic in L.A. if you choose to go with surgery. Just send me an email. I wish you the best.  Ann
HEI July 26, 2005
5mm X 8mm Left AN
Middle Fossa
Dr. Brackmann & Dr. Hitselberger

Obita

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Re: New member
« Reply #13 on: March 16, 2007, 07:19:45 pm »
Hi Gail and welcome!!

Good luck searching out "The One". 

Do you know what size your AN is yet?

I have seen many, many posts on here about drs. at NYU.  If you do a search for NYU here you will get many hits.

Kathy


 
Kathy - Age 54
2.5 cm translab May '04
University of Minnesota - Minneapolis
Dr. Sam Levine - Dr. Stephen Haines

Battyp

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Re: New member
« Reply #14 on: March 16, 2007, 10:30:16 pm »
Gail I'm not familiar with doctors in NY but wanted to say hi and let you know that we're here to help ease your path.  There are a few patients in NY and I'm sure any of them would be more than happy to answer any questions you might have.  If you do a search for NY I'm sure you'll see some names pop up.  Maarten is one that comes to mind.

All my best to you,
Michelle