Now I'm a member of the club.

[G_Man]

After having hearing trouble for about 20 years which initially started as water in the ear and a go round with the ENT/MRI treatment in 2000 which resulted in "Sir, you could use a hearing aide".  Here I am almost 10 years later with my AN.  Now the next chapter begins.  My tumor is small so I am considered a "Watch and Wait" patient.  So now I'm starting where many of you have already been.  I have that "W+W" luxury which some folks didn't get. 
Of course I'm feeling a lot of the feelings that everyone feels.  Some things I'm feeling most others don't know.  Anyway, I'm looking at it from a proactive perspective.  What can I do now to give myself the best chance of making the rest of my life the best it can be with this condition.  First thing is to figure out who are the best AN surgeons in the NYC metro area. 
It amazes me that there isn't a support group in NYC.  I'm reaching out to other areas.
I'd like to talk to anyone in the NYC area who was treated by doctors here and have favorable outcomes.
Thanks
Glen

[pjb]

Hi Glen and welcome to this very informative site I had surgery 7 months ago my surgeons in New York were Dr. Philip Stieg and Dr. Samuel Selesnick they removed my 1 cm. tumor completely and I am having just some normal post-op problems that alot of other people are experiencing other than that I was very satisfied with my surgeons and the hospital NY Presby., other people on the site went to a Dr. Rolands and a Dr. Sisti in the NY area.  I am hoping others will give you additional names and if you like to discuss more about the surgeons you can PM and I would be more than happy to answer any questions you may have.

Best Wishes,

Pat

[Kaybo]

Glen~
WELCOME from Texas!  My friend "debbi" had her surgery in NYC - she & some others have "get togethers" in the city and are having one coming up.  It is not an official support group meeting but i think you might like it!  Send her a PM - I can't remember the name of the thread on here that tells about it...

K   

[Kaybo]

   
NY/NJ Area ANers - Mark Your Calendars!

found it - that is the thread - I don't know how to do the links - sorry!

K 

[G_Man]

Pat
Thanks for your response.  Those seem to be the two teams of doctors here in NYC that most people use. 
My Otologist is Dr. Christopher Linstrom.  He classified me as a W+W patient.  He did not refer me to a surgeon but eveyone else I talk to tells me to see one.  I'm not sure who Linstrom uses.  I have a hearing test scheduled next week.  After that I'm going to go back to Linstrom as I've gathered a lot of test data since I initially met with him 6 months ago.
After that I'm planning to visit at least one neurosurgeon.  I want to get more opinions.  The ENT who referred me to Linstrom thought I could have this removed through the ear.  That tells me it's a rare condition because the ENT's aren't even that well versed in the condition.--

[G_Man]

   
NY/NJ Area ANers - Mark Your Calendars!

found it - that is the thread - I don't know how to do the links - sorry!

K 

Thanks Kaybo, I'll check it out.  This board is big so I can't say I have seen anything close to all of it.

[nteeman]

Hi Glen,

I am in NY and had my surgery done at Mt. Sinai. the details are in my footer and if you have any questions please PM me. We are having a luncheon in May and you can get the details in the AN Community section. BTW, my surgeons were fantastic!

[pjb]

Pat
Thanks for your response.  Those seem to be the two teams of doctors here in NYC that most people use. 
My Otologist is Dr. Christopher Linstrom.  He classified me as a W+W patient.  He did not refer me to a surgeon but eveyone else I talk to tells me to see one.  I'm not sure who Linstrom uses.  I have a hearing test scheduled next week.  After that I'm going to go back to Linstrom as I've gathered a lot of test data since I initially met with him 6 months ago.
After that I'm planning to visit at least one neurosurgeon.  I want to get more opinions.  The ENT who referred me to Linstrom thought I could have this removed through the ear.  That tells me it's a rare condition because the ENT's aren't even that well versed in the condition.--

Glen,

If they are going through the ear my grandson had 2 major surgeries with his ears and the surgeon my son used for him was EXCELLENT he did so much reconstruction in his ears and he was only 7 years old at that time and now my grandson is doing so well it is a miracle.  If you would like me to get his name I will call my son and this could be another option for you.  Hope all goes well next week with your hearing test keep us posted.

Best Wishes,

Pat

[Mickey]

Hi G Man! I`m also from the NYC area and presenly Wait + Watching goin on 3 years now. My doctors are Roland and Golfinos who have a great reputation and I like very much. There is a AN New Jersey which I belong to about as close as your going to get to NY. We also have a Brunchen a few times a year in Manhattan with the next one coming May 2. If you like to talk get in touch with me. Everthings gonna be allright! All the best, Mickey

[jtd71465]

Same here.  Surgery with Golfinos and Roland at NYU in January of 07, if you care to speak with me just send a PM and we can exchange contact information.

Regards,


Joe-

[Jim Scott]

Hi, Glen - and welcome.  Thanks for posting.  Of course I'm sorry you have an acoustic neuroma diagnosis but at least you've come to a good place on the internet to seek information, advice and, especially, support from folks who know exactly what you're dealing with right now. 

I'm in Connecticut and had an excellent neurosurgeon.  Because he wanted to spare my cranial nerves, he de-bulked my large (4.5) AN and I underwent radiation, some 3 months later, according to a detailed plan he had laid out.  All went well.  My radiation oncologist was excellent.  His name is Dr. Johnathan Haas and he now practices in Mineola (Long Island).  Should you strike out on finding doctors you can feel confident with in the Manhattan area - which I doubt will happen, as there are quite a few excellent doctors treating ANs in N.Y.C. - I'll give you a link to my doctor's website and that of Dr. Haas. 

Meanwhile, I hope you'll make contact with the other New York-area AN patients that frequent and contribute to these forums.  I trust you'll be a frequent 'visitor' here and I want to reiterate that we're eager to do what we can to guide and support you through this journey.   

Jim

[moe]

 Glen,
Welcome to the AN club- is this the thread for a get together in  your area?
Maureen

http://anausa.org/forum/index.php?topic=11747.msg135346#msg135346

[moe]

Looks like you found it Glen!-the post

[G_Man]

I'd like to thank all of you for the burst of positive energy.  I'm overwhelmed by it.  I'm going to try and make the Lunch on May 2.  I'm also looking into going to the meeting in NJ in April and also thinking about going to a meeting in Albany that I understand will be happening sometime at the end of March. 
I'm looking forward to meeting a few people in the same boat.

From what I read on this forum the two doctor teams that many people have used are:
•   Roland and Goldfines
•   Dr. Steig and Dr. Samuel Selesnick

I'll be starting there and with my Otologist.
Glen

[pjb]

Glen also look into Dr. Sisti he is afiliated with Columbia University he was highly recommended to me and also Mandy's husband had him as his surgeon.

Best Wishes,

Pat