Author Topic: Just got the news - Looking for Doctors in NY  (Read 6745 times)

zaves

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Just got the news - Looking for Doctors in NY
« on: July 16, 2013, 12:18:34 pm »
Hi everyone,

My 37yr old wife and I just got the news last night that she has an Acoustic Neuroma a bit on the mid-large size - 2.6 x 2.8cm. I've spent the evening -> morning -> afternoon researching doctors to speak with and approaches usually used. So far I've made an appointment with Dr. Sisti, working on scheduling with Dr. Golfinos and I'm sending out the MRI CD and paperwork to Dr. Brackmann at the House Ear Clinic (though we'd likely prefer to stay local since we have two young kids).

She has already lost some hearing/tinnitus (which is why she got the MRI) and is starting to have facial numbness.

I guess we could use some advice on others to see (or if we need to see more). I hear that doctor's tend to recommend what they are comfortable with - and I'd like to get a well balanced spectrum of opinions.

My wife's main fear is damage to facial nerves. My fear is mainly any sort of post-op complications that would reduce her ability to have a happy, long life with the kids.

One more thing - can anyone recommend a set of questions to ask the doctors we see? I'm new to all this and wouldn't want to miss something important.

terisandler

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Re: Just got the news - Looking for Doctors in NY
« Reply #1 on: July 16, 2013, 02:32:17 pm »
The ANA website has tons of information.  You can search the discussion forum to see what others have posted by typing in keywords.  There are threads discussing doctors and questions to ask doctors.  There is a pamphlet specifically addressing the issue of what questions you might want to ask :  http://www.anausa.org/index.php/patient-information-booklets

The main website has links to quite a lot of information, including information about doctors:
http://www.anausa.org

I think you are off to a good start.  This can be very overwhelming but keep breathing.  There are a lot of us out there and we are very supportive of one another.
3/25/13- dx 18x11x14 mm AN, hearing loss in right ear x 5+ years, 5 sessions of CK completed May 2013, now a "post toastie".  Follow up MRI 4/14/14 - 15x19x11 mm. Stable with some signs of necrosis.
 Yippee!

arizonajack

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Re: Just got the news - Looking for Doctors in NY
« Reply #2 on: July 16, 2013, 02:38:22 pm »
There are several AN support groups in NY.


Albany/Mid-Hudson
 
Leader: John Gigliello
518-862-1602
jgigliello@albanyfinancial.com
 

Long Island
 
Leader: Daria Quinones
631-219-0397
dariaq07@yahoo.com
 

New York City
 
Leader: Lauren Tauman Goldberg
917-547-0572
lbgoldberg24@gmail.com
 
 
Leader: Miranda Warren Sacharin
646-964-4679
msacharin@yahoo.com
 

Syracuse/Rochester
 
Leader: Greg Ewing
315-637-7002
gregory.ewing@gmail.com
 
 
Co-Leader: Ceci McCurdy
585-249-4887
cecim@rochester.rr.com
 

3/15/18 12mm x 6mm x5mm
9/21/16 12mm x 7mm x 5mm
3/23/15 12mm x 5.5mm x 4mm
3/13/14 12mm x 6mm x 4mm
8/1/13 14mm x 5mm x 4mm (Expected)
1/22/13 12mm x 3mm (Gamma Knife)
10/10/12 11mm x 4mm x 5mm
4/4/12 9mm x 4mm x 3mm (Diagnosis)

My story at: http://www.anausa.org/smf/index.php?topic=18287.0

zaves

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Re: Just got the news - Looking for Doctors in NY
« Reply #3 on: July 16, 2013, 02:46:36 pm »
Thank you all for the information. I'll check out those resources. I applied for the information packet as well.

This forum has already been an amazing resource, and it does feel good to know you aren't alone.

We actually live in Bergen, NJ so I'll go check out support groups in the area.

THanks again.

LakeErie

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Re: Just got the news - Looking for Doctors in NY
« Reply #4 on: July 16, 2013, 03:56:27 pm »
One of the first articles I read after an MRI confirmed the diagnosis of an AN, was a paper from Harvard med school that stated there were two major factors affecting outcome from AN surgery. They were tumor size and the experience of the surgeon. As almost everything you read here will tell you, experienced surgeons are the key because no one can control the tumor size on diagnosis.

In my case I discussed with my surgeon having a subtotal removal of the tumor if the surgeon found any difficulty dissecting it from my facial nerve. I told him I'd prefer to risk regrowth of the remaining tumor than risk facial nerve function.  I did have a subtotal removal, the surgeon removed 95% to 97% of the tumor except for a sliver on the brain stem and the rest on the facial nerve near the IAC.
 
As far as radiation, the major treatment centers for radiosurgery like UPMC (GK) and Stanford (CK) have excellent records for facial nerve preservation. Data are available on their websites, if radiation is possible in your wife's case. Douglas Kondziolka is a GK specialist now at NYU med center, he was a practitioner at UPMC with Dr Lundsford.

In some cases, complications from surgery or radiation are inevitable. When complications arise they are most often temporary, and when not temporary steps can be taken medically to correct them. And some complications we just get used to and they become less bothersome.

In my case, I did have a mild face droop that lasted 10 days. I had vocal cord paralysis and paresis that gradually improved for over a year and are now gone. I could not swallow on the right side for a year, but that has improved almost completely. The facial numbness I had before surgery remains but I am used to it by now. I list these issues to illustrate that complications may resolve quickly, or more slowly, or even not all. I am also SSD and have adjusted well to deafness.

Your wife will, in all likelihood, have a successful outcome. Any complications will likely be temporary, and for any that are not, she will adjust as we all do.
Good luck.
« Last Edit: July 16, 2013, 04:02:38 pm by LakeErie »
4.7 cm x 3.6 cm x 3.2 cm vestibular schwannoma
Simplified retrosigmoid @ Cleveland Clinic 10/06/2011
Rt SSD, numbness, vocal cord and swallowing problems
Vocal cord and swallowing normalized at 16 months. Numbness persists.
Regrowth 09/19/2016
GK 10/12/2016 Cleveland Clinic
facial weakness Jan 2017

arizonajack

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Re: Just got the news - Looking for Doctors in NY
« Reply #5 on: July 16, 2013, 06:10:55 pm »


We actually live in Bergen, NJ so I'll go check out support groups in the area.



New Jersey Chapter
 
Leader: Wilma Ruskin
609-799-4442
ananjinc@aol.com
 
 
Co-Leader: David Belonger
609-654-8141
dbelonger@verizon.net
 
New Jersey - South
Leader: Tim & Karen Reid
732-341-6002
treid54@comcast.net
 
 
Co-Leader: Victor Mankoski
908-456-2460
mankoski@verizon.net
 
3/15/18 12mm x 6mm x5mm
9/21/16 12mm x 7mm x 5mm
3/23/15 12mm x 5.5mm x 4mm
3/13/14 12mm x 6mm x 4mm
8/1/13 14mm x 5mm x 4mm (Expected)
1/22/13 12mm x 3mm (Gamma Knife)
10/10/12 11mm x 4mm x 5mm
4/4/12 9mm x 4mm x 3mm (Diagnosis)

My story at: http://www.anausa.org/smf/index.php?topic=18287.0

Chances3

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Re: Just got the news - Looking for Doctors in NY
« Reply #6 on: July 17, 2013, 11:23:48 am »
Hi Zaves,

Sorry to hear about your wife's AN.  Here we are - we're all AN survivors, and that by itself should be encouraging for her.  I had a small tumor, I had Dr. Roland and Dr. Golfinos remove it 3 years ago.  I was lucky because my tumor was smaller enough to save my hearing, which they did.  My son's business associate has a daughter who had a large tumor removed by Dr. Sisti.  She had an excellent recover, albeit she lost her hearing, but Dr. Sisti warned of that from the start.

Feel feel to contact me personally, I would be happy to discuss more with you and your wife.  Best advice I can give - learn as much as you can, so that you can make a well informed decision that you are happy with.  I also encourage your wife to post and speak with other members, particularly women around her age, who have been through this journey.

God Bless.

jamssp

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Re: Just got the news - Looking for Doctors in NY
« Reply #7 on: July 17, 2013, 12:56:42 pm »
I had surgery in March with Drs. Philip Gutin and Samuel Selesnick.  The surgery was at Memorial Sloan Kettering although Dr. Selesnick is primarily affiliated with Weill Cornell. They were terrific.  I had translab and my tumor was about 2 cm.  I did lose my hearing and have some pesky tinnitis (which they warned me would likely never go away) but I have no facial issues and I'm back to running, biking, swimming and living a very full life. I suspect most (if not all) of the surgeons will tell you that they might have to leave a little of the tumor if it means protecting the facial nerve and that is what happened in my case.  I will have to monitor it and hopefully there will be no regrowth.  Meet with a number of surgeons and see who you feel most comfortable with.  Ultimately it's a bit of a gut decision and a leap of faith.  Roland/Golfinos and Sisti are also wonderful choices.  Good luck!  :)

Mary
2 cm AN, Translab March 2013, Dr's. Gutin & Selesnick, Memorial Sloan Kettering, NY.
SSD but otherwise doing great!

Blags

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Re: Just got the news - Looking for Doctors in NY
« Reply #8 on: July 17, 2013, 08:21:31 pm »
I am same age as your wife and had surgery oct 2012 with dr. John Boockvar neurosurgeon and dr.kevin brown neurotoylologist at Weill Cornell. Had great results and they were very thorough in explaining options. Any question feel free to private message me.
Oct 2012 - 1.4cm AN removed retro sigmoid with Dr. Boockvar and Dr. Brown at Weill Cornell NY Presbyterian

rver0611

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Re: Just got the news - Looking for Doctors in NY
« Reply #9 on: September 05, 2013, 01:25:27 pm »
I too have been just diagnosed 08/27/13- i believe to be small at 1.5cm X 08mm. Are you having any luck with doctors I too live in nj- but central nj - has anyone ever heard of the doctors at JFK brain and spine center  in nj.  So far I am looking to meet with DR Stieg in NYC he also wants a Dr Knopman to join the consultation. Anyone ever heard of him. Unfortunately dealing with insurance who do not want to pay for any NY doctors :(

moeson

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Re: Just got the news - Looking for Doctors in NY
« Reply #10 on: September 05, 2013, 07:52:02 pm »
Sorry for your diagnosis, but if you are considering radiosurgery, I highly recommend Dr. John Lipani of Princeton Neurological Surgery.
MRI and Dx on 12/11/12, 1.7 x .9 x .8 cm
CyberKnife 1/23-25/13 @Capital Health Hopewell w/Dr. Lipani and Dr. Chen

v357139

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Re: Just got the news - Looking for Doctors in NY
« Reply #11 on: September 12, 2013, 06:54:48 am »
Hi everyone,

So far I've made an appointment with Dr. Sisti, working on scheduling with Dr. Golfinos and I'm sending out the MRI CD and paperwork to Dr. Brackmann at the House Ear Clinic (though we'd likely prefer to stay local since we have two young kids).

First decision I would try to make is, does she want surgery or radiation?  You may find some differences among doctors on this.  Those are all good doctors you mention.  They might all recommend surgery and not radiation.  If you want someone who might recommend radiation, I would talk to Dr Kondziolka at NYU.    Kondziolka uses Gamma Knife on tumors 3cm and up.  The docs you mention probably only do radiation on smaller ones.
Dx 2.6 cm Nov 2012, 35% hearing loss.  Grew to 3.5 cm Oct 2013.  Pre-op total hearing loss, left side tongue numb.  Translab Nov 2013 House Clinic.  Post-op no permanent facial or other issues.  Tongue much improved.  Great result!!

 


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