Author Topic: Advice in choosing between NYC surgeons Roland/Golfinos verus Sisti  (Read 21943 times)

rachelnyc

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Dear Group,
My name is Rachel. Im 33 yo with a 3mo daughter. I was diagnosed with a 2cm cranial AN on my left side just a few days ago. Its been a very difficult past few days to say the least. Finding the right surgeons as well as multimodal support (like this site) is what is important to me now. My family and I have done hours of research and networking. We have appts on Monday with Golfinos/Roland at NYU and then Sisti at Columbia. Have any of you used either? If so, would any of you be comfortable sending me their recommendation and why. I am looking for the best possible outcome (who isnt). I want the triple play!!! no tumor, no deafness, and no facial paralysis. Im praying hard.
If any of you have similar stories or have worked with these surgeons, I would be most grateful to hear from you.

Best regards,
Rachel
Left AN 2.5 cm
4 sudden hearing loss episodes with fullness and dizziness since 2008
Retrosigmoid 1/9/13 NYU Golfinos & Roland
Complete tumor removal but have SSD, facial palsy, external eye-lid weight (Blink-eze)

dtorres135

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Re: Advice in choosing between NYC surgeons Roland/Golfinos verus Sisti
« Reply #1 on: December 03, 2012, 11:56:16 am »
You and I are very similar.  I saw both doctors and sounds like we have similar issues.  I decided to stick with Dr. Roland/Golfinos.  Would you like to further discuss on the phone?  I'm 49.. never been sick.  This is just crazy

MDemisay

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Re: Advice in choosing between NYC surgeons Roland/Golfinos verus Sisti
« Reply #2 on: December 03, 2012, 01:35:25 pm »
Dear Rachel,

I just sent you a PM on why I prefer Dr. Sisti over Dr. Golfinos. I have interviewed many brain docs, 14 to be exact! Dr. Sisti makes you feel at ease, doesn't talk at you and tells it like it is.
All the best this Christmas!

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!

millie

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Re: Advice in choosing between NYC surgeons Roland/Golfinos verus Sisti
« Reply #3 on: December 03, 2012, 04:21:19 pm »
Rachel...I went to those doctors and  had surgery with Doctors Roland and Golfinos.  Dr. Sisti recommended radiation for me.  He also said he did not operate on tumors smaller than 2.5 cm.  Now, my July MRI showed my  tumor  had grown,  and, in October  after Dr. Golfinos (who said I could do either radiation or surgery; Dr. Roland seemed to agree with me on surgery) got it out, he said it was bigger than they thought.  I liked Roland and Golfinos-but/nd  I  wanted the thing out of my head if possible.  My hearing was already pretty much gone in the an ear-especially, it eroded in the least 8 months before surgery so trans-lab was not a hard choice for me.
I am recovering pretty much as I was told I would.  The first days after surgery were hard but I dare say I improve a little every day.  I was told to research and then go with my gut (by members of this forum and also my local ENT) and I did and have no regrets.  Every person's journey is unique and you will find your way.  Once you make the decision on method of treatment, it will get easier. 
Mil

Blags

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Re: Advice in choosing between NYC surgeons Roland/Golfinos verus Sisti
« Reply #4 on: December 03, 2012, 05:50:37 pm »
Hi - I saw Sisti and drs at Cornell who I ended up going with. I am the same age as you in great health prior. I went with dr. Boockvar and dr. Brown at Cornell. They were fantastic. Very thorough yet patient with me. I am almost 8wks post op and saved most my hearing, no paralysis and my balance is getting better. I went for a 2mile run today. Tumor removed 100%. Scan in feb to make sure no regrowth. Feel free to message me to get my number and speak with me. I also saw dr. Selesnick and Gutin at Sloan memorial as well as two out state phone consults. Never felt need to get another opinion at nyu.
Oct 2012 - 1.4cm AN removed retro sigmoid with Dr. Boockvar and Dr. Brown at Weill Cornell NY Presbyterian

rachelnyc

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Re: Advice in choosing between NYC surgeons Roland/Golfinos verus Sisti
« Reply #5 on: December 04, 2012, 12:18:38 pm »
Thanks for all of your thoughts and advice.

I just spent, what felt like the longest day of my life, interviewing Golfinos/NYU and Sisti/Columbia. They couldnt be more different in their approach. Golfinos recommeded microsurgery- the retrosigmoid approach. He said my tumor is so far in my ear canal that hearing preservation is highly unlikley (like 20%). This breaks my heart.

I went to Dr Sisti at Columbia and he recommended the gamma knife radiation. He stated he doesnt operate on tumors of my size and under. He said that I would be an excellent candidate for radiosurgery. He certainly is confident about the product he sells and discouraged surgery "becuase who wants to go to the OR and have weeks and weeks of recovery". When I asked him about the risks associated with radiation he stated none of his pre-selected GK patients have malignant tumors due to the fact he carefully selects who is an appropriate candidate. He also said he is retiring in 5 years and that someone else will fill his shoes and carry his patients through their life span. It was nice to hear that there is an alternative to invasive surgery but man, he certainly likes to hear himself speak.

Im at a crossroads as to what and who to choose. I overnighted my records and MRI to the head of neurosurgery at the MAYO clinic (due to personal connections) and Im hoping to hear his feedback soon. Im leaning towards surgery becuase I want this out and I dont want to have to manage this every year and worry about it. I want to spend my energy expanding my family and leading as normal a life as possible. I feel like i just got hit with a big dirty garbage truck.

My MRI impression states: "large enhancing acoustic neuroma with intracanalicular and cerebellopontine angle components with mild mass effect on the middle cerebellar peduncle and overall measures up to 1.3x2.0x1.9 cm."

If any of you have something similar to my results, would you mind being in touch?

Me, my friends, and family are amateurs...

Thanks to all.
Left AN 2.5 cm
4 sudden hearing loss episodes with fullness and dizziness since 2008
Retrosigmoid 1/9/13 NYU Golfinos & Roland
Complete tumor removal but have SSD, facial palsy, external eye-lid weight (Blink-eze)

leapyrtwins

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Re: Advice in choosing between NYC surgeons Roland/Golfinos verus Sisti
« Reply #6 on: December 06, 2012, 10:45:49 am »
Rachel -

these 3 doctors all have excellent reputations.  Personally I don't think you can go wrong with any of them. 

Just wanted to note that 99.9% of ANs are benign - and radiation doesn't change that.  Also surgery doesn't always take "weeks and weeks" of recovery.  While 6 weeks recovery is the "norm" lots of us have had different experiences.  For example, I was back to work part-time 2 1/2 weeks post op and full-time 4 weeks post op. 

Treatment is a personal choice and you need to decide whether surgery or radiation is best for YOU based on what the doctors are telling you.

Follow your heart, your head, and your gut - and make sure whichever doctor you choose you have 100% faith, trust, and confidence in him.

Best,

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

dtorres135

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Re: Advice in choosing between NYC surgeons Roland/Golfinos verus Sisti
« Reply #7 on: December 07, 2012, 02:43:49 pm »
Rachel

Let's talk in person.  I'm in the same boat and saw the same doctors.  I am now awaiting to hear what House Clinic will tell me and finalize my decision hopefully.  I work in the city and can meet with you if you like. 

Diana: I removed your phone number for security purposes.  Please send Rachel a PM with your number as I'm sure she might want to meet with you.

Jim
« Last Edit: December 07, 2012, 03:33:24 pm by Jim Scott »

lisagail

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Re: Advice in choosing between NYC surgeons Roland/Golfinos verus Sisti
« Reply #8 on: December 14, 2012, 09:42:34 pm »
I had a 2.5 AN and saw Roland/Golfinos at NYU and also went to Kondolikia (sp) in Pittsburgh.  Insurance coverage and family responsibilities played a role in my decision and I ended up having gamma knife at NYU.  I am thrilled that I did.  My tumor is shrinking and my balance is back to normal.  My facial numbness is also gone!  I know they are waiting for a new machine, but with AN you do have time to wait.  Surgery is serious, and brain surgery particularly so.  Meet with everyone and do your research on what doctors would do in your situation.  What ever you choose, this will not be the worst thing that will happen to you in life!  Like everyone else on this forum, you will overcome.  I would be happy to talk and live in NYC.

JLR

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Re: Advice in choosing between NYC surgeons Roland/Golfinos verus Sisti
« Reply #9 on: December 15, 2012, 06:24:33 am »
Hi..Have you looked into CK? My AN was 2.5 cm and was told I was a good candidate for CyberKnife. Which I did 2 years ago at Winthrop Hospital in Mineola, NY.  The doctor to see is Dr. Haas! You can google the hospital and Dr. Haas' info comes up. Take care, Joan

Mickey

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Re: Advice in choosing between NYC surgeons Roland/Golfinos verus Sisti
« Reply #10 on: December 15, 2012, 10:34:32 am »
I have been a W+W patient of Dr. Roland + Golfinos for 6 years now. I have great confidence in the ability of them in all respects. As far as surgery they probably have done at least 2 a week since I have known them which I know qualifies them experience wise. I have never heard a bad word about them. Best wishes, Mickey

rachelnyc

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Re: Advice in choosing between NYC surgeons Roland/Golfinos verus Sisti
« Reply #11 on: December 27, 2012, 09:16:54 pm »
Thanks all.

Ive made my decision. Im having surgery with GOlfinos and ROland at NYU Jan 9. Im having the retrosigmoid approach. I have been inadvertingly watching and waiting for 5 years and have had 4 terrible episodes that have been extremely life distrupting. I want this behind me and feel Ive made the right choice for me. Im 33 yo and do not want to take any chances with radiation.

Left AN 2.5 cm
4 sudden hearing loss episodes with fullness and dizziness since 2008
Retrosigmoid 1/9/13 NYU Golfinos & Roland
Complete tumor removal but have SSD, facial palsy, external eye-lid weight (Blink-eze)

millie

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Re: Advice in choosing between NYC surgeons Roland/Golfinos verus Sisti
« Reply #12 on: December 30, 2012, 07:55:18 pm »
Best wishes, Rachel.  We'll be praying for you. Mil

Chances3

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Re: Advice in choosing between NYC surgeons Roland/Golfinos verus Sisti
« Reply #13 on: December 31, 2012, 09:30:38 am »
Hi Rachel,

I tried reaching you last week.  I want to wish you all the best.  You have a lot going on with your new position and your baby.  If you need to talk, just call or email me.

Stay strong !!

dtorres135

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Re: Advice in choosing between NYC surgeons Roland/Golfinos verus Sisti
« Reply #14 on: January 02, 2013, 08:29:22 am »
Good luck and keep us posted.  I plan on doing the surgery in June.  Millie how are you recovering?

 


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