Author Topic: Recommendations in NYC  (Read 4782 times)

Debbi

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Recommendations in NYC
« on: March 06, 2008, 10:28:57 am »
Hi All-

I am newly diagnosed (two days ago) with a 2cm AN on the right side.  Found it when I visited my ENT to investigate hearing loss in my right ear.  Three cheers for the ENT for sending me for an MRI right away!

I am going through what many of you have already experienced - stunned disbeliief, fear, hope.  And, I am trying to find at least two surgeons to consult before I make a decision on treatment.  I already have an appointment with Dr. Benitez in Summit, NJ and would like to hear from anyone who has seen him.

I have seen several references to Dr. Golfinos (out of NYU, I beleive) and would be very appreciative of any feedback on him.

And, any other recommendations would be very welcome.  I am anxious to get this thing out of my head, but want to make sure that I am in excellent hands.

Debbi
New Jersey
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

jerseygirl

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Re: Recommendations in NYC
« Reply #1 on: March 06, 2008, 11:07:23 am »
Debbie,

I am sorry you have to deal with AN but this website is absolutely wonderful with all the information and support it provides. I also leave in NJ and had my AN treated twice, so I visited a lot of surgeons. Expertise and experience of your treating team are crucial to your good outcome. There are many teams in NY who have done hundreds of these surgeries and every big hospital has their own team. Here is the 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.

My understanding is that you are leaning towards the surgery, not radiation and you are at the beginning of your research. If you reject radiation in favor of surgery, make sure you know what you are rejecting and why. Your tumor size now allows both as a feasible option. I would (and I did) visit a few doctors just to get their opinion and understand your tumor location  and the critical structures it is pressing on.

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: Recommendations in NYC
« Reply #2 on: March 06, 2008, 03:39:35 pm »
I look forward to our discussion.


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

leapyrtwins

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Re: Recommendations in NYC
« Reply #3 on: March 06, 2008, 06:32:21 pm »
Debbi -

I just read a post by Cheeka and her signature line says she had retrosigmoid surgery in NYC 2 years ago.  Maybe if you contact her she can give you some feedback on her doc.

Best wishes,

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

PrisB_NJ

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Re: Recommendations in NYC
« Reply #4 on: March 10, 2008, 02:16:58 pm »
Debbi, I also live in northern NJ and have a right-sided acoustic neuroma of 2 cm. I met with Drs. Roland and Golfinos at NYU in the Nov-Dec timeframe per my ENT's recommendation. Both are top doctors in NYC. Dr. Roland is a neurotologist and Dr. Golfinos is a neurosurgeon and they team together for operations. Dr. Roland recommended translab surgery and referred me to Dr. Golfinos who does both surgery and Gamma Knife radiosurgery.  Dr. Golfinos thought that I would be better off with GK because of my age (67)and the level of my speech discrimination (>50%).  He said he has performed 43 GK procedures.   Since I prefer GK over surgery, I am also contacting the University of Pittsburgh since they have a lot of experience in GK. 

Debbi

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Re: Recommendations in NYC
« Reply #5 on: March 11, 2008, 03:58:45 pm »
To all who responded - thank you!  I have scheduled a consultation w/Dr. Golfinos for next week and want to carefully weigh out the surgery versus GK decision.  Much to think about. 
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: Recommendations in NYC
« Reply #6 on: March 12, 2008, 10:27:54 pm »
Debbi -

good luck with the consultation; let us know how it goes.

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

SteveWWD

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Re: Recommendations in NYC
« Reply #7 on: March 24, 2008, 06:16:29 pm »
I had surgery in NYC.  I met with Dr. Roland who worked as part of a team with Dr. Golfinos.  This is what he said in my consultation http://www.myacousticneuroma.com/doctors_jrmd.htm  I never met Golfinos.  I decided to go with Drs Steig and Selesnik after meeting with them.  Everyone that I had talked to before my surgery seemed to either go with one or the other team.  I also met with Dr. Raj Shrivastava, but only because my insurance said that he was the only one that I could use.  I would highly recommend the Steig / Selesnik team.

Debbi

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Re: Recommendations in NYC
« Reply #8 on: March 25, 2008, 06:57:13 am »
Thanks, Steve.  I had also heard that these two teams were the best in our area.  I met with both Golfinos and Roland and really liked them both.  Since I had already has several other consultations at that point, it was an easy decision.  I am scheduled for tranlab on 4/23 at NYU. 

I'm scared, excited, nervous, looking forward to life.  What kind of surgery did you have?
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

ennayram

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Re: Recommendations in NYC
« Reply #9 on: April 02, 2008, 09:33:56 pm »
Hi Debbi,

I just saw your post and wanted to say that I believe you are in great hands with Dr. Roland and Dr. Golfinos. They performed my surgery (almost 3.0cm tumor touching the brain stem) in 2002. My recuperation was very fast with minimal discomfort. My only side effect is the loss of hearing, but I experienced that before the surgery. Dr. Roland sees you for all follow up visits. He gives you all the time you need. He is a great surgeon and a very caring person.

Good luck with the surgery. If you need anything, please contact me.

MaryAnne

(hey Maryann.... sorry but had to omit your personal email address from the post as its against site rules to publically post personal info.... but, folks can email (PM) you here for the details on how to contact you... thanks for understanding. Phyl)
« Last Edit: April 21, 2008, 05:56:18 pm by ppearl214 »

marymomof3

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Re: Recommendations in NYC
« Reply #10 on: April 06, 2008, 09:18:32 am »
Hi Debbi - So you got your scheduling issues resolved!  Drs Roland and Golfinos are wonderful.  It's been just over 2 weeks for me, and I feel great.  Still haven't gotten behind a wheel yet, but I trying to get myself to do pretty much everything else.  I've been doing a lot of internet shopping instead! ha ha ha! 

You know you can call me if you ever need to talk.
Mary
Diagnosed Jan 21, 2008 w/1.8CM AN on left side.  Had is removed on March 19th at NYU.  And I am super grateful for such wonderful doctors!!

irina

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Re: Recommendations in NYC
« Reply #11 on: May 12, 2008, 06:50:08 pm »
Have anyone heard about doctors M.Sisti and Steven Isaacson at Columbia University?

jerseygirl

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Re: Recommendations in NYC
« Reply #12 on: May 12, 2008, 07:42:47 pm »
Irina,

I just answered you on another thread. I hope you read it. Best of luck to you in your search.

                   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.

ada tucker

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Re: Recommendations in NYC
« Reply #13 on: March 31, 2009, 05:58:22 pm »
Hi,

This is Ada.  I now live in Fla but had by surgery with Dr. Sen in NYC 5 years ago.  I can only tell you wonderful things about him and the outcome of my surgery.  It was a great success.  He did tell me he would try to save my hearing but unfortunately coulld not.  However,  My face was not affected at all.  Tru I have headaches but I have nothing but great things to say about Dr. Sen and his office staff.