Good vestibular therapist in NYC.

[akaltz]

Hi..I'm new to the community. My husband has been diagnosed with AN in April 2011 and we just got back home from Stanford where he had CK with Dr. Chang/Hancock. Dr. Chang recommended starting vestibular therapy asap.

Does anyone know a good vestibular therapist in NYC ?

Many thanks!
Anna

[ombrerose4]

Hi Anna,

My name is Lauren and I am an ANA support group leader in Manhattan. I had my surgery at Mt. Sinai and followed up with a wonderful physical therapist, Laurie Allen Schneider, at Mt Sinai's outpatient rehab center on 102 Street off Madison Avenue. She is one of 2 vestibular therapists there. I thought she was wonderful! There are also vestibular therapists at NY Presbyterian. And I just found another vestibular therapist through the place I am having PT for my neck. Her name is Susan Kim and I have spoken to her about speaking at a future support group meeting. If you would like more information about my experience you can email me here

Lauren

Lauren, thanks for understanding... removed your personal email contact info. Please feel free to share with others in PM/emails.  Phyl

[akaltz]

Hi Lauren,

Thank you so much for your recommendation. You've mentioned an AN support group in the city, where and when do you meet?
Also have you come across a good acupuncture resource who has experience with brain tumors, radiation etc?

Many thanks,
Anna

[mandy721]

Hi Anna,
The next meeting of the local NYC support group will be on July 16.  Here is the announcement -

NEW YORK CITY
LOCAL SUPPORT GROUP MEETING INVITATION

Please plan to join us at the next meeting of your local Acoustic Neuroma Support Group. 
We welcome you to learn about the latest treatment options, to network with other acoustic
neuroma patients and find encouragement and support.

DATE/TIME:
Saturday, July 16, 2011
1:00 - 3:00 pm

LOCATION:
NYU Medical Center
Skirball Institute Conference Room (3rd Floor)
550 First Avenue at 32nd Street
New York, NY  10016

Directions:
When you enter the building, make a left and follow signs for D elevator (through glass doors). 
Take the D elevator to the 3rd floor.  When you exit elevator, make a right and the conference
room is in the right corner.

TOPIC:
Speaker TBA

FOR ADDITIONAL INFORMATION OR TO RSVP, CONTACT YOUR LOCAL SUPPORT GROUP LEADERS/FACILITATORS:
Lauren Tauman Goldberg, Local Support Group Leader/Facilitator
Miranda Sacharin, Local Support Group Co-Leader/Co-Facilitator

Who should attend?   Family members, caregivers, friends and interested persons are encouraged to attend.

Benefits of attending a local support group include communicating in a nurturing, non-judgmental environment with others who have shared a common acoustic neuroma experience; sharing information on dealing with specific problems, overcoming handicaps and reassuring others that better times lie ahead; educating and informing each other about the latest acoustic neuroma topics of interest; and providing emotional support to all patients, both pre- and post-treatment. This helps in reducing the isolation and loneliness that many acoustic neuroma patients feel.

Acoustic Neuroma Association
600 Peachtree Pkwy. #108
Cumming, GA 30041
Phone: 1-877-200-8211 or 770-205-8211
Fax: 1-877-202-0239 or 770-205-0239
www.ANAUSA.org
Email: localgroups@anausa.org

I hope to meet you at the meeting.
Miranda

[JLR]

Hi Anna,  I am a New Yorker as well and thought about Dr. Chang at Stanford as well but I went to Winthrop Cyber Knife in Mineola instead..Would you mind sharing what made you travel to California. I think I should have gone there as well. Thanks, Joan

[jak1]

JLR,

I went to Dr. Chang for a few reasons. 

1) He does about 75 of these a year.
2) His practice is about 50% surgery and 50% radiosurgery with no real bias.
3) His length and depth of experience.
4) Interviewing some of his patients about their experiences.
5) CK was invented in Stanford.

It was not the easiest decision for me, but I feel it was the best decision for my situation.  I say this because we had to fly cross country and stay in a hotel with a 5 month old baby.  Moreover, future correspondence will be more of a virtual nature..

Why do you think you should have gone there instead of Mineola?

-JAK

[akaltz]

Joan,

JAK( My husband) listed all of the reasons that convinced us to travel to CA. My only concern was not having a doctor locally here in NY.
Dr. Chang reassured me that 40% of his patients are from out of state and that we can contact him with any issues.

Wishing you all the best!
Anna

[akaltz]

Miranda,

Thank you so much for the info!

Anna

[JLR]

Hi Jak & Anna, I went to Winthrop as they were highly recommended.  They have a wonderful Cyberknife facility.  BUT there specialty is not just AN's - but appears to be other problems i.e. prostate cancer and now they are trying to get clearance for breast cancer. So they are very much in the forefront in cyberknife but again its not just AN's.  Dr Chang appears to have that expertise. I have many symptoms of the post CK which Winthrop understands and is very caring about but they dont have that many patients with those types of problems...you know...wonkiness, balance issues, numbness etc.. I guess I should not kvetch...no coulda woulda shoulda...all the best to you. Joan

[akaltz]

Hi Joan,

Today we hit a first roadblock with our dr being out of state. We are scheduling an appointment with Susan Kim, vestibular therapist recommended by Lauren. They told us we need a prescription from a local dr, they don't take out of state prescriptions. So Jason needs to see his ENT here in NYC next week in order to get a prescription.

How are your symptoms ? I believe you are 6 months post CK...was it tough 6 months?

Anna