Author Topic: Looking for help Finding a Surgeon  (Read 3100 times)

WAB

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Looking for help Finding a Surgeon
« on: March 05, 2008, 07:15:04 pm »
My bride just learned that she has AN and we're not certain how best to find a top surgeon in the NY, NJ area.  We're starting to read everything to better understand this next chapter in our lives, and found this forum and thought we would ask.

I'm sure we'll speak to many Doctors over the next few weeks, but if there was a website someone could suggest that gets us to the right person/team quicker, I would be gratefull.

Thanks for your help,
WAB

leapyrtwins

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Re: Looking for help Finding a Surgeon
« Reply #1 on: March 05, 2008, 11:05:39 pm »
WAB -

this website offers a list of physicians - not endorsed by the ANA - who treat ANs.  It's a good starting point.

I'm also sure there are forum members who live in your area who will chime in shortly and give you suggestions.

If you haven't already, contact the ANA about informational brochures; you'll find them extremely helpful.

Good luck to you and your bride,

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

jerseygirl

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Re: Looking for help Finding a Surgeon
« Reply #2 on: March 06, 2008, 07:47:07 am »
Hi, WAB,

I am sorry your bride has to deal with AN but she is in luck because more than one neurosurgeon in New York removed hundreds of ANs and has the expertise. I would recommend visiting a few to learn more about the tumor and the situation your bride is in. Just about every major hospital in NY has a neurosurgeon dealing with AN. Here is a list:

DR. Sisti (Columbia Presbyterian) - does both micro- and radio- surgery. He does Gamma radiation with Dr. Isaacson and both are very good at explaining things. I would start with Dr. SIsti.

Dr. Golfinos at NYU does micro-, GK and FSR. He works with Dr. Roland, neurotologist and will refer you to him if necessary. He is also very good at explaining things.

Dr. Sen (Roosevelt) does micro- only but he removed huge tumors of all kinds and works with Dr. Constantino who is an otolaryngologist and  a plastic surgeon. What is good about the team is that they give you a lot of information about the tumor, do not pressure you into treatment of any kind and not particularly prejudiced against radiation if indicated and/or possible.

There are two other teams I did not visit but came highly recommended: Dr. Steig at Cornell and Dr. Post at Mount Sinai. To my knowledge, they do only microsurgery but are very experienced.

I am not aware that CK (another type of radiation) is available in NY. You might have to travel out of state if you choose that. Quite a few people are very pleased with CK, so research that aslo.

Best of luck and keep us posted!

                         Eve
Right side AN (6x3x3 cm) removed in 1988 by Drs. Benjamin & Cohen at NYU (16 hrs); nerves involved III - XII.
Regrowth at the brainstem 2.5 cm removed by Dr.Shahinian in 4 hrs at SBI (hopefully, this time forever); nerves involved IV - X with VIII missing. No facial or swallowing issues.

jtd71465

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Re: Looking for help Finding a Surgeon
« Reply #3 on: March 06, 2008, 09:20:38 am »
WAB-

I consulted with three Dr.'s in the NY/NJ area and one on the west coast.  I went with the team on Golfinos and Roland from NYU Medical Center, for a number of reasons.  I'll send you a quick note with my contact information so you can contact me directly if you wish to discuss.


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

WAB

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Re: Looking for help Finding a Surgeon
« Reply #4 on: March 06, 2008, 11:46:38 am »
Thank you everyone for your quick and valuable responses!

We've been able to secure one appointment with a doctor our ENT Dr. recommended and have made contact with Dr. Golfinos' office with the hope to secure a second appointment. 

Joe D. - Thanks for your contact info.  I just spoke to my wife, Debbi, and she's going to reach out to you, I believe by email later today.

You've all been great, thanks again for the support.
WAB

Captain Deb

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Re: Looking for help Finding a Surgeon
« Reply #5 on: March 06, 2008, 01:43:08 pm »
WAB--just click on the Acoustic Neuroma Assoc logo in the upper right hand corner of this page and you will find just such a website.  There is a physician list in the main menu. All of the docs on this list have met the criteria set by the ANA as having sufficient experience in treatment of ANs. Also you will find a few folks to chime in on this thread or go to the physicians thread, too.

Capt Deb 8)
"You only have two choices, having fun or freaking out"-Jimmy Buffett
50-ish with a 1x.7x.8cm.AN
Mid-fossa HEI, Jan 03 Friedman & Hitselberger
Chronic post-op headaches
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