Author Topic: In the NYC area? Any recommendations ?  (Read 12513 times)

MDemisay

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In the NYC area? Any recommendations ?
« on: February 05, 2012, 05:11:58 pm »
Hi all! Do you have any recommendations in the area forGamma Knife and Cyber Knife, I may not be as able to travel as I once thought. So I decided to do some research I have a bunch of information from eight years ago, but I assume a lot has changed since then .

Is this a good start?

Mike
1974 - Dr. Michelson  Colombia Presbyterian removal of 3 Arterio Venous Malformations
2004- Dr. Sisti  NY Presbyterian subtotal removal of 3.1 cm AN,
2012 - June 11th Dr. Sisti Gamma Knife (easy-breasily done)"DEAD IRV" play taps!
Research, research, research then decide and trust in God's Hands!

mandy721

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Re: In the NYC area? Any recommendations ?
« Reply #1 on: February 05, 2012, 07:58:02 pm »
In the NY area, I am familiar with Dr. Michael Sisti ( http://www.med.nyu.edu/biosketch/rushs01) at Columbia Presbyterian Med Center, treats acoustic neuromas with both  Gamma Knife and micro-surgery.  A member of our local NYC support group had Gamma Knife treatment with Dr. Stephen Rush (http://www.med.nyu.edu/biosketch/rushs01) at NYU with good results. 

Husband diagnosed 5/30/09 with 3.2cm right AN
Surgery at  Columbia Presbyterian 8/4/09
Platinum eye weight implant - 8/17/09
17 days in hospital and rehab
SSD, facial weakness, some tinnitus, headaches , balance and eye problems

Mickey

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Re: In the NYC area? Any recommendations ?
« Reply #2 on: February 05, 2012, 09:49:45 pm »
Drs. Roland and Golfinos @ NYU Medical Center. Best wishes, Mickey

Mei Mei

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Re: In the NYC area? Any recommendations ?
« Reply #3 on: February 06, 2012, 07:03:58 pm »
I don't know about NY, but if you can get as far as Pittsburgh, Dr. Kondziolka at University of Pittsburgh Medical Center.    A surgeon in our local support group in Washington went there.   This is the place to go.
Mei Mei
1 cm Tumor RetrosigmoidSurgery on Jan 12 at Johns Hopkins
Drs. Niparko and Tamargo
35dB loss pre surgery and now SSD
Post surgical Headaches and Tinnitus
Dr Ducic Georgetown Excision Surgery May 2011
Dr. Schwartz GW  Titanium Mesh  March 2012
Drs Kalhorn/Baker, Georgetown Removal of Titanium Mesh

mandy721

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Re: In the NYC area? Any recommendations ?
« Reply #4 on: February 07, 2012, 09:10:09 am »
Drs. Roland and Golfinos @ NYU Medical Center. Best wishes, Mickey
Hi Mickey,
Dr. Rush works with Drs. Roland and Golfinos. 
Husband diagnosed 5/30/09 with 3.2cm right AN
Surgery at  Columbia Presbyterian 8/4/09
Platinum eye weight implant - 8/17/09
17 days in hospital and rehab
SSD, facial weakness, some tinnitus, headaches , balance and eye problems

Mickey

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Re: In the NYC area? Any recommendations ?
« Reply #5 on: February 07, 2012, 10:32:35 am »
Yes, Dr. Rush and the new Gamma Knife machine @ NYU Medical Center. Along with Drs. Roland and Golfinos and crew your probably got one of the top notch AN treatment centers in the world. They are on top of everything from W+W, Rad., Surgury, +new tech. Best wishes, Mickey

JLR

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Re: In the NYC area? Any recommendations ?
« Reply #6 on: February 07, 2012, 11:58:06 am »
Mineola,LI is not to far from NYC..Dr. Jonathan Haas, Winthrop CyberKnife Center, Mineola, NY.  He has a fine team. Good Luck.

leapyrtwins

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Re: In the NYC area? Any recommendations ?
« Reply #7 on: February 08, 2012, 10:58:45 pm »
Not sure which of these docs does radiation, but docs repeatedly cited on the Forum in the NYC area include - Roland, Golfinos, Selesnick, & Sisti.

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

MDemisay

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Re: In the NYC area? Any recommendations ?
« Reply #8 on: February 09, 2012, 01:04:45 pm »
Jan,

Dr. Sisti did my initial resectioning (subtotal) of my AN in 2004, and the plan was to return to him should I need to do Gamma Knife.

Unfortunately, I have to do Gamma Knife now but am a little reluctant because his associate has only done 12 with CT scans with contrast and is vastly more experienced in targeting with MRI's. I am trying to find more experience with limited targeting.

 I initially met (2004) Dr. Golfinos but he wanted at the time to completely remove the tumor and leave me with 60% facial paralysis. Needless, to say I opted out of going with him. I have poor balance as a result of cutting my vestibular and no hearing in my left ear as a result of cutting my hearing nerve.

But, at this point I don't care who I have my consultation with. Just so I can get rid of the thing that rides behind my bad ear.
1974 - Dr. Michelson  Colombia Presbyterian removal of 3 Arterio Venous Malformations
2004- Dr. Sisti  NY Presbyterian subtotal removal of 3.1 cm AN,
2012 - June 11th Dr. Sisti Gamma Knife (easy-breasily done)"DEAD IRV" play taps!
Research, research, research then decide and trust in God's Hands!

pjb

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Re: In the NYC area? Any recommendations ?
« Reply #9 on: February 22, 2012, 09:12:26 am »
I do not have an answer but just needed to respond it appears you went to the best in NY and still had issues .. It is a little disappointing how some have good results and others do not even when treated supposedly by the best ? I am now in a W & W status due to some residual left behind and deciding on a doctor makes it so difficult with many different outcomes how do you decide who and how to treat something as important as our brains ?

Regards,

Pat
Diagnosed with a 1 cm. AN had Retrosigmoid
Approach surgery July of 2009, several problems after surgery.

MDemisay

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Re: In the NYC area? Any recommendations ?
« Reply #10 on: February 22, 2012, 10:27:01 pm »
Pat,

I am taking my time with this as it's so important to me to maintain the me that is left after my first AN surgery. So I can afford to go out of state if necessary, do I want to....NO but I will if I have to!

I want the most experienced with my type of CT scan with contrast the most experienced hospital and the newest equipment. I also depending on aftercare(if necessary) am interested in a center of excellence. Because I went to the original hospital I went to in 1973, that was a mistake because while they were the best that New York at the time, they ranked 14th in 2004. I won't make that mistake again, for that, I have only myself to blame!

Dr. Sisti is one of the best, he did an excellent job with my AN resection it was 3.1 cm he debulked it to 1.4 x 0.9 cm now it has grown some to 1.8  x 1.3 cm. He says it's time for Gamma Knife, I am weighing my options......


Mike
1974 - Dr. Michelson  Colombia Presbyterian removal of 3 Arterio Venous Malformations
2004- Dr. Sisti  NY Presbyterian subtotal removal of 3.1 cm AN,
2012 - June 11th Dr. Sisti Gamma Knife (easy-breasily done)"DEAD IRV" play taps!
Research, research, research then decide and trust in God's Hands!

chloes mema

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Re: In the NYC area? Any recommendations ?
« Reply #11 on: February 23, 2012, 03:31:12 pm »
Good luck, Mike.  Keep us posted as you have been.  :)

Karen
Diagnosed October 2011
Oct '11-9 X 6 mm left ear
Mar '12 - 1.25cm
Tinnitus, imbalance, and mild dizziness (ditsy)
My AN = Annoying Nuisance
Jan'12 W&W
May'12 CK completed
Oct'12 hemifacial spasms
Dec'19 It's back

pjb

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Re: In the NYC area? Any recommendations ?
« Reply #12 on: February 24, 2012, 09:41:12 am »
Pat,

I am taking my time with this as it's so important to me to maintain the me that is left after my first AN surgery. So I can afford to go out of state if necessary, do I want to....NO but I will if I have to!

I want the most experienced with my type of CT scan with contrast the most experienced hospital and the newest equipment. I also depending on aftercare(if necessary) am interested in a center of excellence. Because I went to the original hospital I went to in 1973, that was a mistake because while they were the best that New York at the time, they ranked 14th in 2004. I won't make that mistake again, for that, I have only myself to blame!

Dr. Sisti is one of the best, he did an excellent job with my AN resection it was 3.1 cm he debulked it to 1.4 x 0.9 cm now it has grown some to 1.8  x 1.3 cm. He says it's time for Gamma Knife, I am weighing my options......


Mike

Thanks Mike for your reply I was suppose to go to Dr. Sisti as per the advice of my neurologist but he did not accept my insurance and went with a team that was going to work with mine but was not happy with some of the results but cannot complain it could have been worse. Now in the W & W mode I am meeting with Dr. Golfino in March but deep in my heart I would love to go to HEI if needed but flying is stopping me maybe if and when I have to make a decision at that time I might feel differently. But I think we just have to go where the results are GREAT ...

Regards,
Diagnosed with a 1 cm. AN had Retrosigmoid
Approach surgery July of 2009, several problems after surgery.

Mei Mei

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Re: In the NYC area? Any recommendations ?
« Reply #13 on: March 19, 2012, 06:31:24 pm »
I went to Dr. Selesnick at NY Weill Cornell on E 70th St.    His name was given to me by our family's long trusted ENT also at Cornell:  Dr. Lloyd Dropkin.
He was very patient, thorough and explained everything that I needed explaining.   He gave me the usual three options:  Surgery, Watch and Wait and Radiation.
Mei Mei
1 cm Tumor RetrosigmoidSurgery on Jan 12 at Johns Hopkins
Drs. Niparko and Tamargo
35dB loss pre surgery and now SSD
Post surgical Headaches and Tinnitus
Dr Ducic Georgetown Excision Surgery May 2011
Dr. Schwartz GW  Titanium Mesh  March 2012
Drs Kalhorn/Baker, Georgetown Removal of Titanium Mesh

Jim Scott

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Re: In the NYC area? Any recommendations ?
« Reply #14 on: March 20, 2012, 02:29:20 pm »
Mike ~

For what it's worth: Dr. Jonathan Haas plotted and oversaw the 26 FSR treatments for my debulked AN.  My neurosurgeon teamed with Dr. Haas as part of his plan to debulk the tumor and cut off it's blood supply, then (90 days later) have it radiated (without waiting to see if might re-grow).  The plan proved highly successful.  At the time (2006) Dr. Haas was in New Haven, Connecticut but has since moved his practice to Mineola, Long Island, as JLR noted.  Should you wish to consider going to Nassau county, Long Island I can recommend Dr. Haas based on my personal experience.

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.