Hello Schwannoma Survivors!

I have had a goal to start a sort of "Recommended Physicians" list on our blog. One of the most common questions that we get on the Facebook page is "Do you know of a good surgeon who deals with these issues?" in this or that city or state. In the United States at least this is a difficult proposition to compile such a list, because of the size of our country and the vast number of hospitals and facilities where neurosurgery is practiced. However my idea was that we COULD simply create a list - one which could be amended and added to, of physicians who have treated us well and who have given Schwannoma Survivors the best possible results, considering all the challenges that we have associated with these tumors.

I will be the first to say that these are simply recommendations; they are not verdicts on the entire career and abilities of the surgeons in question. Neurosurgery, as many of you know, is a very complicated business and nobody - not myself or anyone else can guarantee perfect results or spectacular outcomes. But I thought we can indeed tell you which surgeons treated members of our group well - and delivered good enough results such that our group members would recommend them to someone else seeking treatment.

Here is the list we have, which we will expand as more suggestions get sent to us:

(*Note, In order to more specifically point people to Acoustic Neuroma specialists, we have created a similar "Recommended Physicians" page for those who need to find an experienced Acoustic Neuroma Neurosurgeon; you can find that list at :

http://schwannomasurvivorsandfighters.blogspot.com/2015/09/physicians-who-have-taken-good-care-of.html .

We are currently arranging the two lists and will be moving most ENT listed specialists over to the Acoustic Neuroma list.)

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Dr Thomas Scully (Location, Arizona, United States)

Northwest Neurospecialists, Tucson, Arizona

Phone: (520) 742-7890

http://nwneuro.com/Home/

Notes for Dr Scully: Dr Scully was the surgeon that removed my Schwannoma in 2009

(Neil the creator of the blog and FB page) He is an excellent surgeon, a great person, and his staff

were all exceptional. Would highly recommend him.

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Dr Alfred T Ogden (Location, New York, United States)

Department of Neurological Surgery

Neurological Institute

New York, New York

Phone: (212) 305-0795
http://www.columbianeurosurgery.org/doctors/alfred_ogden/

ato2{at}columbia{dot}edu

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Dr Mark H Bilsky (Location, New York, United States)

Memorial Sloan Kettering Cancer Center

New York, New York

http://www.mskcc.org/cancer-care/doctor/mark-bilsky

Phone: 212.639.2275

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Dr Allen H. Maniker (Location, New York, United States)

Beth Israel Medical Center

New York

http://www.docnet.org/physicians/phys_bios.aspx?phys_id=11711

Phone: (212) 844-8383

Email: amaniker@chpnet.org

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Dr Raj Murali (Location, New York, United States)

Westchester Medical Center
Valhalla, New York

http://www.westchestermedicalcenter.com/rajmuralimdfacs

Phone: (914) 493-7000

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Dr Eric Elowitz (Location, New York, United States)

Weill Cornell Physicians
New York

http://www.weillcornell.org/physician/eelowitz/

Phone: 212-746-2870

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Dr Michael Cho (Location, New York, United States )

Mid Hudson Nuerological Specialists
Poughkeepsie, New York

http://michaelhchomd.com/mid-hudson-neurosurgical-specialist-pc-biography.htm

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Dr Ankesh Negam

Albany Med, Albany, New York
http://www.amc.edu/PhysicianDirectory/index.cfm?event=showPhysicianDetail&PRACT_ID=4833

Phone: 518.262.0940
FAX: 518.262.4926

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Dr Allan D Levi (Location, Florida, United States)

University of Miami Hospital

1400 N.W. 12th Ave

Miami, Florida 33136

Office: 305-243-9596
Fax: 305-243-3247
http://uhealthsystem.com/doctors/profile/1257
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Dr Roberto C Heros (Location, Florida, United States)

University of Miami Health System

Miami, Florida

http://uhealthsystem.com/doctors/profile/1233

Phone: 305.243.6946

FAX: 305.243.3247
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Dr Allan Belzberg

The Johns Hopkins Hospital, Baltimore, Maryland

http://www.hopkinsmedicine.org/profiles/results/directory/profile/0005517/allan-belzberg

(Contact phone numbers Listed on the link above )

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Dr Jean-Paul Wolinsky

The Johns Hopkins Hospital Baltimore, Maryland

http://www.hopkinsmedicine.org/profiles/results/directory/profile/0019298/jean-paul-wolinsky

Phone: 410.955.4424

FAX: 410.502.3399

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Dr Jaishri Blakeley (Location, Maryland, United States)
(Neurologist) Johns Hopkins Medicine
Baltimore, Maryland

http://www.hopkinsmedicine.org/profiles/results/directory/profile/0017623/jaishri-blakeley

Phone: 410-502-6732
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Dr Jon Weingart

The John Hopkins HospitalBaltimore, Maryland

https://www.hopkinsmedicine.org/profiles/results/directory/profile/0004228/jon-weingart
Phone: 410.614.3052

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Dr. George Jallo (Florida, United States )

Johns Hopkins All Children’s Hospital

Director,Institute Brain Protection Sciences

601 5th Street South, Suite 511

St Petersburg, Florida 33701

Office (727) 767-8181

Phone: 410-955-7851

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Dr C Rory Goodwin, PhD

DukeHealthDurham, North Carolina

https://www.dukehealth.org/find-doctors-physicians/c-rory-goodwin-md-phd
Phone: 919.684.6273 FAX: 919.668.1221

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Dr Richard Lytle

Mission Hospital

Asheville, North Carolina

http://health.usnews.com/doctors/richard-lytle-129125

Phone: 828.255.7776

FAX: 828.274.7855

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Dr S. Scott Lollis (Location, New Hampshire, United States)

Dartmouth-Hitchcock Medical Center
Lebanon, New Hampshire

http://cancer.dartmouth.edu/neuro_brain/teamprofile/57223/S_Scott_Lollis_MD

Phone: (603) 650-8730
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Dr Tomothy Lucas (Location, Pennsylvania, United States )

University of Pennsylvania

http://www.pennmedicine.org/providers/profile/timothy-lucas

Phone: 800- 789- 7366

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Dr David Wright

Allegheny Hospital

Pittsburgh, Pennsylvania

http://doctor.webmd.com/doctor/david-wright-md-dd98d38f-35ed-45c8-9bc0-7d36b4fbdd1c-overview

Phone: 412.359.8850

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Dr James F Pingpank

UPMC Passavant-McCandlessPittsburgh, Pennsylvania

http://hillman.upmc.com/find/providers/james-pingpank-59683
Phone: 412.692.2852

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Dr Eric M Horn, PhD

IU Health Neuroscience Center
Indianapolis, Indiana

https://www.goodmancampbell.com/physicians/eric-m-horn
Phone: 317.396.1300
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Dr Robert Spinner (Location, Minnesota, United States )

Mayo Clinic
Rochester, Minnesota

http://www.mayoclinic.org/biographies/spinner-robert-j-m-d/bio-20054099

Phone: 507-538-3270

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Dr William Krauss (Location, Minnesota, United States )

Mayo Clinic
Rochester, Minnesota

http://www.mayoclinic.org/biographies/krauss-william-e-m-d/bio-20054302

Phone: 507.284.2511

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Dr Anthony Burrows

Mayo Clinic, Mankato, Minnesota

https://mayoclinichealthsystem.org/providers/anthony-burrows-md
Phone: 800.327.3721

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Dr Raouf Mikhail

Hurley Medical Center

Flint, Michigan

http://health.usnews.com/doctors/raouf-mikhail-250063

Phone: 810.238.1118

FAX: 810.238.9849

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Dr Samuel Borsellino (Location, Ohio, United States )

Cleveland Clinic

(Hillcrest Hospital, Mayfield Heights, Ohio)

http://my.clevelandclinic.org/staff_directory/staff_display.aspx?DoctorID=8144

Phone: 216.636.5860

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Dr Nicholas Bambakidis (Location, Ohio, United States )

University Hospitals Case Medical Center

Cleveland, Ohio

http://www.uhhospitals.org/find-a-doctor/bambakidis-nicholas-9205

Phone: 216.844.3192

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Dr Bradley H Koffman (Location, Kansas, United States)

Menorah Medical Center

Overland Park, Kansas

http://menorahmedicalcenter.com/physicians/profile/Bradley-H-Koffman-MD/

Phone: 913.498.6270

FAX: 913.498.6619
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Dr Douglas E Anderson

Loyola Medicine

Chicago, Illinois

http://health.usnews.com/doctors/douglas-anderson-18942

Phone: 708.216.9000

FAX: 708.216.4948

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Dr Dachling Pang (Location, California, United States)

Dameron Hospital
Oakland, California

http://health.usnews.com/doctors/dachling-pang-2737

Phone: 510.752.1000
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Dr Praveen Mummaneni
UCSF Department of Neurological SurgerySan Francisco, California
http://neurosurgery.ucsf.edu/index.php/about_us_faculty_mummaneni.html
Phone: 866.81.SPINE

Dr Shuer Lawrence (Location, California, United States)

Stanford University

(Stanford Hospital and Clinics, Palo Alto, California)

https://med.stanford.edu/profiles/lawrence-shuer

Phone: 650.723.6469

FAX: 650-725-8279

Email: lshuer@stanford.edu

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Dr. Patrick C. Hsieh (Location, California, United States )

(Practices in Southern California USC, etc)

http://www.keckmedicine.org/doctor/patrick-c-hsieh/

Contacts listed on link

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Dr John C. Liu (Location, California, United States )

(Practices in Southern California, USC Keck Hospital, and Beverly Hills)

http://www.keckmedicine.org/doctor/john-c-liu/

Contacts listed in link

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Dr. Bohdan Chopko

Ohio Neurological Physicians

https://www.ohiohealth.com/find-a-doctor/profile/4420/Bohdan-W-Chopko

Email: bchopko@stanford.edu

*Note on Dr Chopko; he has received very glowing reviews from people who said that he was an excellent surgeon, and truly a very kind and understanding person. He came to our attention because he successfully removed a 9 POUND Schwannoma from a man. Also, another lady wrote to say she had travelled from out of state to have him remove her Schwannoma, and that he, his staff, and his treatment were top notch.

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Dr Robert Spetzler

St. Joseph’s Hospital and Medical Center

Phoenix, Arizonia

http://health.usnews.com/doctors/robert-spetzler-9564

Phone: 602.406.3489

FAX: 602.406.4402

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Dr Andrew Ko

UW MedicineSeattle, Washington

https://www.uwmedicine.org/bios/andrew-ko
Phone: 206.598.3300
FAX: 206.598.6494
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Dr Alex Mohit (Location, Washington state, United States)

CHI Franciscan Health
Gig Harbor, Washington

http://www.chifranciscan.org/PhysicianDetails.aspx?physicianID=636062

Phone: 253.274.7505
FAX: 253.274.7995

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Dr James L. Netterville (Location, Tennessee, United States )

http://www.vicc.org/dd/display.php?person=james.netterville

Phone: 615-322-6180

Physicians: 1-877-936-8422

*Note on Dr. Netterville, Dr. Netterville comes highly recommended as a specialist in treating Vagal Schwannomas.

His use of "Intracapsular Enucleation " surgical treatment has produced excellent results that make his name among the leading surgeons practicing treatment of head and neck tumors, particularly Vagal Schwannomas.

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Dr Daniel Refai (Location, Georgia, United States )

Emory Ortho and Spine Center
Atlanta, Georgia

http://www.emoryhealthcare.org/physicians/r/refai-daniel.html

Phone: 404.778.7000
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Dr Jason Weaver (Location, Tennessee, United States)

Semmes-Murphy Neurologic and Spine Institute
Memphis, Tennessee

https://www.semmes-murphey.com/contact_us.php

Phone: (901) 522-7700

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Dr Lucien Nedzi

UT Southwestern Medical CenterDallas, Texas

https://utswmed.org/doctors/lucien-nedzi/
Phone: 214.645.8300
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Dr Andrew C Roeser ( Location, Texas, United States)

Neurosurgical Group of Texas
Houston, Texas

http://www.neurosurgery-texas.com/andrew-c-roeser-md.html

Phone: 713.790.1211

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Dr Arnold B Vardiman

Neurological Associates of San Antonio
San Antonio, Texas

https://sahealth.com/physicians/profile/Arnold-B-Vardiman-MD
Phone: 210.477.1956
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Dr Kevin O. Lillehei (Location, Colorado, United States)

University of Colorado Hospital
Aurora, Colorado

http://www.ucdenver.edu/academics/colleges/medicalschool/departments/Neurosurgery/faculty/clinicalfaculty/Pages/lillehei.aspx

Phone: 303.724.2305
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Dr Rudy Kovachevich (Location, Colorado, United States)

Hand Surgery Associates
Englewood, Colorado

http://www.hsacolorado.com/rudy-kovachevich/

Phone: 303-744-7078

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Dr William Couldwell (Location, Utah, United States )

University of Utah Health Care
Salt Lake City, Utah

http://healthcare.utah.edu/fad/mddetail.php?physicianID=u0311081

Phone: (801) 585-6065
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Dr Rajiv Midha (Location, Calgary, Alberta, Canada )

Foothills Medical Centre, Calgary
Contact information on the link below:

https://www.ucalgary.ca/dcns/about-dcns/facultymembers/midha-rajiv

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Dr Andrew Lee (Location, New Westminster, Canada - near Vancouver)

Contact information on the link below:

https://neurosurgery.med.ubc.ca/faculty/faculty-spotlight/andrew-lee-md-frcsc/

Phone: 604.526.8979
FAX: 604.526.7317

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Dr Darren Biberdorf. (Location, Victoria, BC, Canada )

Contact information on the link below:

http://south-island.fetchbc.ca/service.html?i=724
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Dr Richard Reid. (Location, Victoria, BC, Canada )

Contact information on the link below:

https://neurosurgery.med.ubc.ca/faculty/faculty-spotlight/richard-reid-md-frcsc/

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Mr Ashok Paul. (Location, United Kingdom)

Manchester University NHS Foundation TrustManchester, United Kingdom

https://www.spirehealthcare.com/consultant-profiles/mr-ashok-paul-c3611975/
Phone: 0161 276 4037
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Mr. Vladimir Petrik (Location, United Kingdom )

Consultant Neurosurgeon
Queen Elizabeth Hospital

Birmingham, England

Phone: 0121 371 6894

Extension: 0121 371 6894

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Dr Nick Thomas ( Location, United Kingdom )

Kings College Hospital, London, UK

http://theharleystreetclinic.com/neuroscience-consultant/nick-thomas

Phone: UK 020 7034 8709

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Mr Dirk Strauss (Location, United Kingdom )

Consultant Surgeon
The Royal Marsden Hospital

London, England

http://www.royalmarsden.nhs.uk/consultants-teams-wards/staff/consultants-r-z/pages/mr-dirk-strauss.aspx

Phone: 020 7811 8111

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Mr Francis Johnston (Location, United Kingdom )

St. George’s Hospital / Parkside Hospital

Wimbledon, United Kingdom

http://www.parkside-hospital.co.uk/consultants/mr-francis-johnston/

Phone: 020 8971 8000

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Dr Bernhard Meyer (Location, Germany)

Technische Universität München - Munich, Germany

(Click on Link)

http://www.professoren.tum.de/en/meyer-bernhard/

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Dr Benjamin Jonker (Location, Australia)

Royal Prince Alfred Hospital

Sydney, Australia

http://www.cwneurology.com.au/dr-benjamin-jonker.html

Phone: 02 6362 0711

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Dr Erica Jacobson (Location, Australia )

Sydney’s Children Hospital

Randwick, Australia

Phone: +61 2 9326 6140

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Dr Craig Timms ( Location, Australia )

Melbourne, Australia

Suite 2, Lvl 8, Epworth Centre, 32 Erin St, Richmond, VIC, 3121

1300 886 631

Read more: http://www.startlocal.com.au/health/neurosurgeons/vic_melbourne/#ixzz35N4pVK3x
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Dr Su Jang Wen (Location, Singapore)

Gleneagles Medical Centre
Singapore 258499

http://www.singaporedoc.com/index.php/cardiothoracic-surgeon/dr-su-jang-wen.html

Phone: 6473 3930
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These are the physicians we have who received direct recommendations from our group members. This list will be expanded as more people share with us good experiences they've had with particular surgeons.

If anyone who has had treatment for a Schwannoma and feels their physician is worthy of a recommendation for others who are currently seeking treatment, feel free to contact us at the Facebook page "Schwannoma Survivors & Schwannoma Fighters"

https://www.facebook.com/SchwannomaSurvivorsSchwannomaFighters

(Disclaimer: advice shared on this blog or on our related Facebook page cannot be a replacement for proper medical treatment by a trained physician. Speak with a Doctor before making any medical decisions.)

This post I am very happy to share with everyone - Dr George Jallo of Johns Hopkins Hospital was kind enough to agree to answer a short Q and A to try to help us with some clear answers to fundamental questions about Schwannomas and what is typical for those who have been diagnosed with one or more of them. Dr Jallo is Professor of Neurological Surgery, Pediatrics and Oncology, Clinical Director, Pediatric Neurosurgery, Director, Neurosurgery Residency Program at Johns Hopkins. I told him that I hope that we can answer some of the basic questions about Schwannomas so that we may be able to fill a gap that there seems to be in people's knowledge of these tumors, and here are his answers to a simple set of questions I sent him. - Neil

1) Being diagnosed with a Schwannoma is a frequently confusing and upsetting situation for those who are affected by these tumors. What would you say is the most important advice that you would give someone newly diagnosed with a Schwannoma? What are, in your opinion, are wise first steps to take ?

The best advice if once diagnosed with a Schwannoma is to confirm the diagnosis and obtain all the details. Where is the tumor, how large is it? Is it compressing by spinal cord or brain? Do I need to be screened for other tumors. Fortunately the vast majority of these tumors are benign and do not require any treatment further than surgery. One needs to be certain it is a schwannoma and not another tumor type. However the only sure way to have the correct diagnosis is surgery and then histological analysis/biopsy of the tumor

2) I have said to people on our FB page that, from my own experience, being diagnosed with a Schwannoma usually means that one will face surgery at some point, now or later. I asked my own GP and neurosurgeon if they would validate that statement, generally, and they both said yes. Do you also take this view that Schwannomas will, in most or almost all cases, require surgery at some point? And what are some cases, if you can give any general or specific advice, in which one may NOT want to opt for removal of their Schwannoma? Please share any specifics you can to shed some light on the removal or non-removal of Schwannomas.

Once diagnosed most people will require surgery as although these tumors are benign they do grow slowly. The only exception that surgery is not needed is when these tumors are very small or in a location which does not compress the spinal cord, brain or nerves.

3) In your own career as a surgeon, in the cases where you have had to help patients confront Schwannomas, approximately what percentage of those were removed by surgery? I understand specifics may not be possible, but a general estimation would perhaps be helpful in helping people understand how many have to come out, and how many are treated or monitored by other means.

I would say that I have only observed 10% of patients as the remaining patients (patients that do not have their Schwannomas removed). We do not operate on some smaller tumors in older patients. Of the Schwannomas we see we operate on approximately 90% due to the fact that patients either have symptoms from the tumor or the tumor has grown on serial MRI scans.

4) People are frequently confused and feeling a bit lost after diagnosis with a Schwannoma. Are there any online resources that you would suggest for those who are newly diagnosed? Anything to help them understand their situation better?

No good sites as most focus on multiple schwannomas or neurofribromatosis. *Note from Neil - we hope to remedy this!

5) Do you have a suggestion as to what hospitals and research hospitals are the best when it comes to Schwannoma surgery? We all understand that Johns Hopkins, your hospital, is one of the top facilities anywhere - but for those in other parts of the country who may not have easy access to JH, are there any other excellent programs that you would suggest?

I do not recommend any specific hospital but to ask your surgeon how many such tumors he/she has operated on and long term results. You just want to have an experienced surgeon perform the operation.

Dr. George I. Jallo

Professor of Neurological Surgery, Pediatrics and OncologyClinical Director, Pediatric Neurosurgery
Director, Neurosurgery Residency Program

CONTACT INFORMATIONThe Johns Hopkins Hospital
Department of Neurosurgery
600 N. Wolfe Street, Phipps 556
Baltimore, MD 21287

410-955-7851 (p)

410-955-7862 (f)

gjallo1@jhmi.edu

http://www.hopkinsmedicine.org/neurology_neurosurgery/experts/profiles/team_member_profile/1AA01A01D587F812AFA4BCCDE88B4E5B/George_Jallo

https://www.facebook.com/SchwannomaSurvivorsSchwannomaFighters

Schwannoma Survivors & Schwannoma Fighters

Wednesday, January 1, 2014

Recommended Physicians Who Have Taken Good Care of us, from the Schwannoma Survivors

Dr Samuel Borsellino (Location, Ohio, United States )

Dr. Patrick C. Hsieh (Location, California, United States )

Phone: 615-322-6180

Physicians: 1-877-936-8422

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Dr Craig Timms ( Location, Australia )

Melbourne, Australia

Sunday, October 6, 2013

If You Are Doing Research on Schwannomas, We Have a Group and Here We Are

Saturday, June 15, 2013

A Short Q and A with Dr George Jallo - Answering Some Basic Questions About Schwannomas