Featured Medical Papers on the Study of Schwannomas

Hello all!  It has long been the goal of the Schwannoma Survivors & Schwannoma Fighters group to get easy to understand, accessible information - as well as firsthand stories, about Schwannomas to those who needed it the most.  Often there is a disconnect between the dense knowledge that neurosurgeons have on Schwannomas - and the fact that the general public has almost no comprehension of what they are.  But when I asked our group on Facebook if they would like to read more detailed medical papers on Schwannomas, the vast majority said yes.  So, I decided that the mission of getting easy to understand articles out to people would continue, but that we would also do an occasional feature called a "Featured Medical Paper on Schwannomas."  And I am going to use this blog to archive some of the more interesting medical papers I have found here.

I stress that these papers are essentially the working domain of medical professionals - but in the spirit of learning, it does not mean that all content is inaccessible to the rest of us.  I invite you to read these papers at your leisure, and feel free question your own doctor about them if there is information in the paper that you believe may assist you in dealing with Schwannomas. - Neil


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"First experience of stereotactic radiation therapy for vestibular schwannoma using CyberKnife"

*Note, this article is a summary of results and success rates for Cyber-knife radiation therapy on Vestibular Schwannomas.  This article was originally written in Russian, but this translation is offered and has some interesting insights into the rates in which Cyber Knife treatment can stabilize or reduce the size of Schwannomas.

http://www.ncbi.nlm.nih.gov/pubmed/22629843

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"Schwannoma in Head and Neck: Preoperative Imaging Study and Intracapsular Enucleation for Functional Nerve Preservation"

*Note, this article deals with the surgical method called "Intracapsular Enucleation."  This is a newer method of dealing with particularly problematic Schwannomas, and is becoming a common method of treatment for those with Vagal Schwannomas in particular.  We have published a short blog detailing this procedure, and also one speaking about Dr. Netterville at Vanderbilt University, who is a leader in this kind of surgical treatment.  To read our short blog on this click here . 

Yonsei Medical Journal

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2995979/

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"Radio surgery of Spinal Meningiomas and Schwannomas"

*Note, we have long sought more accurate information about the rates of successes with the regards to radio surgery when used to treat schwannomas.  There are some interesting stats in this article summary regarding relative success rates - regarding the stoppage of growth or potential shrinkage of tumors via radio surgical treatment.  Well worth a look if you are being advised to seek radio surgery for a schwannoma..


http://www.ncbi.nlm.nih.gov/pubmed/22181328

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"Spinal Schwannoma; Analysis of 40 Cases"

* Note, this is an extensive, detailed article dealing with a wide range of cases and situations with those suffering from spinal schwannoma.  

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2588243/

Journal of Korean Neurosurgical Society

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"A Literature Review on Surgery for Cervical Vagal Schwannomas"

* A well written overview on many details about Vagal Schwannomas

https://wjso.biomedcentral.com/articles/10.1186/s12957-015-0541-6

World Journal of Surgical Oncology
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*More papers will be added in the future as we become aware of them

What to Ask the Doctor if You Have Just Been Diagnosed With Acoustic Neuroma

by Dr. Leanne Haroun & Neil Myers

Hello everyone!  One of our most popular blog-articles on the Schwannoma Survivors & Schwannoma Fighters blog has long been the blog "What to Ask the Doctor if You Have Just Been Diagnosed With a Schwannoma."  But for those who have Acoustic Neuromas / Vestibular Schwannomas - many of the details of what a patient may need to know can differ from those who suffer from the variety of other commonly known Schwannomas.  So, we enlisted to help of our advisor to the page for AN / VS, Leanne Haroun.  Leanne has a unique perspective because she herself had an AN, and she is also a third year student in medical school.  So with her assistance, we'd  like to offer you this blog of useful questions to ask your doctor if you have just been diagnosed with an Acoustic Neuroma / Vestibular Schwannoma.  We hope it helps you in getting the answers you need, and the best possible treatment outcome!
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1) What is your area of specialization? How many vestibular schwannomas have you operated on?  

Why this question?  It is in your best interest to find a neurosurgeon or ENT who has extensive experience with AN/ VS.  Some neurosurgeons specialize in only nerve tumors of the head, and therefore if one can seek out surgeons who have operated extensively on nerves such as the cranial nerves where AN / VS are found, it gives you the best possible chances at a good outcome, by way of having a surgeon who is a specialist to that area of the body, performing the surgery.  

2) Which surgical approach will you be taking? What are the pros and cons of this approach? Are there other alternatives?

Why this question? There are 3 different approaches: 1) retrosigmoid/suboccipital 2) translabyrinthine and 3) middle fossa. Depending on the goals of the surgery (i.e. hearing preservation in patients who still have functional hearing on the tumor side), there are pros and cons to each approach. Because I did not have any noticeable hearing loss on my right side (where my tumor was located), my surgeon took the retrosigmoid approach, which makes hearing preservation possible. But if you are already deaf on the side of your AN/VS, your surgeon may opt for the translabyrinthine approach.

3) Will you be working with ENT (ear, nose & throat surgeon) to remove my tumor?

Why this question?  Some AN / VS specialist surgeons will work in teams - in some cases a neurosurgeon teamed with an ENT ( Ear, Nose, and Throat specialist).  In other cases an experienced AN surgeon will do the entire procedure. 

4) What are my chances of hearing preservation / facial nerve preservation?

Why this question?  It is possible to suffer some degree of loss of sensation or facial paralysis after the removal of some AN / VS tumors.  So it is in the patient's interest to try to learn just how much the nerve is expected to be affected by the surgery, and what prospects the surgeon gives the patient - given the size and location of the tumor, in the interests of keeping the maximum possible preservation of the facial nerve.  (Leann has written a postscript with further details on this question.   Scroll to the end of the article to read )

5)  How long will the surgery be? How much of the tumor do you expect to remove?

Why this question?  In order to preserve maximum nerve function after the surgery, a significant number of AN / VS 's will be partially removed.  It may be helpful to the patient to know this in advance, and to better understand the surgery, the duration of the surgery, and expectations of results.  

6)  Will I be in the Neuro ICU?

Why this question?  Many Schwannoma surgeries require a short stint in the ICU, often 1 to 2 days after surgery. It is helpful to know if this is expected.

7)  What should I expect after surgery? Potential complications?

Why this question?  It is a simple matter of getting a prospectus as to what might be expected post surgery.  It is helpful to know if you need to plan for rehab, for family or loved ones to assist in your care after surgery - and as well, to know what risks of complications are present.

8)  How long will I need to recover? Do you think I may need rehab? How much assistance will I need at home and for how long?

Why this question?  As stated above, you want to make sure you have the necessary assistance in the days and weeks after surgery.  And knowing what plans the surgeon has for your rehabilitation and recovery can only better assist you in planning and making sure you fully understand the post surgical time period you will experience.

9)  Do you think I could have neurofibromatosis type 2?

Why this question?  Neurofibromatosis type 2 is a genetic condition understood to be present in some patients who have Acoustic Neuromas / Vestibular Schwannomas.  (Leanne has added further notes on this in the postscript to this article.  Scroll to the end of the article to read . )

10)  Will it grow back? What would my options be at that point? 

Why this question?  It is always helpful to know how much of the tumor the neurosurgeon believes he or she can remove.  And in that same light, it is also helpful to know if the surgeon has thoughts on the risks of regrowth even if he or she believes the entire tumor to be removed.  It is certainly in the patient's interest to do their best to plan for the future - including potential means of treatment should a regrowth occur.

Postscript notes

Here are a few further details provided by Leanne Haroun, relative to several of the questions stated above.  These are details she wrote:

For number 4 - I'd like to add this: the goal of any neurosurgeon is to remove as much of the tumor while minimizing any damage to the delicate nerves in that area - mainly the vestibulocochlear nerve and facial nerve.  AN/VSs grow off of the vestibulocochlear nerve, which is responsible for balance and hearing.  Because the tumor grows directly off of this nerve, some degree of hearing loss on the side of the tumor must be anticipated. The facial nerve, which supplies the muscles responsible for smiling and eye closure, sits right above the vestibulocochlear nerve. Because of this, facial nerve damage may be unavoidable as well. In general, the larger the tumor, the higher the chances of damage to the vestibulocochlear nerve or the facial nerve. There is good news though! Today, neurosurgeons are able to directly monitor all of the nerves surrounding the tumor during surgery and because of this, avoidable damage can be minimized.

My tumor was 2.3 cm (considered "moderately" sized) and my surgeon was able to preserve both my hearing and facial nerve function, although my hearing on the right side is definitely not as good as my left side. I can hear in my right ear, but understanding someone if I use my right ear to talk on the telephone is a bit harder as the words sound "fuzzier." Otherwise, it is hardly noticeable.

For number 9 -  NF2 is a very rare genetic syndrome characterized by bilateral AN/VSs as well as other types of tumors of the nervous system. Only around 5% of people with AN/VSs actually have NF2. I only include this question because I myself was worried about this prospect because I was diagnosed with my tumor at a much younger age than normal. Most people diagnosed with AN/VS are between the ages of 30 - 60 and do not have NF2. When you are diagnosed at an age younger than 30 (and especially if diagnosed at 20 or younger), NF2 becomes more of a concern. Therefore, I believe it is prudent to ask about NF2, especially if you are in this younger age bracket. 

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Disclaimer: Leanne Haroun and Neil Myers assume no liability whatsoever for the comments or advice offered in the content of this blog.  Leanne and Neil have offered advice generally on the issues relating to treatment of Schwannomas - however Leanne Haroun, Neil Myers, and the Schwannoma Survivors & Schwannoma Fighters group always insist that a person should make all major medical decisions in consultation with one's own physician.

Physicians Who Have Taken Good Care of Us - Recommended Physicians for Acoustic Neuroma Patients

Hi everyone!  Today I'm pleased to offer a new blog that is directed specifically to our friends with Acoustic Neuroma/ Vestibular Schwannoma.  After speaking with members of other support groups on Facebook, we hit upon the idea of creating a page that would be a version of our general "Recommended Physicians Page" - except make this one specific for doctors that specialize and have experience in the treatment of Acoustic Neuromas.  So today, with the great help of our Page Assistant Mary Caspole, we are pleased to offer you this Recommended Physicians Page for Acoustic Neuroma doctors.  These doctors all have received a personal recommendation from someone who had been treated or had surgery for AN, and if you find yourself in the search for a knowledgeable doctor with this speciality - please inquire about one of these.

And I want to be very clear, by these recommendations we are NOT passing judgment on a physician's entire surgical career.   It is always up to the patient specifically to evaluate the doctor and decide who to trust with their situation.  Acoustic Neuroma surgery - like a great many Schwannoma Surgeries, is a very delicate neurosurgical procedure, and not all results will be predictable or perfect.  We have to grant that these treatments are challenging - but, at the same time, it helps new patients to know who might be a good doctor to speak with.  We hope this list is of assistance to you, and have a great day! - Neil

*Note we also have a general list of doctors experienced in the treatment of other kinds of Schwannomas, such as spinal cord Schwannomas, vagal Schwannomas, etc - you can find that list at:

http://schwannomasurvivorsandfighters.blogspot.com/2014/01/recommended-physicians-who-have-taken.html

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Dr. John G Golfinos

NYU Langone Medical Center

New York, New York

http://health.usnews.com/doctors/john-golfinos-16660

Phone: 212.263.2950

Fax: 212.263.168

*Dr Golfinos comes very highly recommended, by multiple sources - one of them also a neurosurgeon who has assisted our page.

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Dr J Thomas Roland

NYU Langone Medical Center 

New York, New York

http://health.usnews.com/doctors/j-thomas-roland-17474

Phone: 212.263.5565

Fax: 212.263.2019

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Dr Elizabeth B Claus

Brigham and Women’s Hospital  

Boston, Massachusetts 

http://physiciandirectory.brighamandwomens.org/Details/1679

Phone: 855.278.8010

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Dr Ian F Dunn

Dana-Farber Cancer Institute 

Boston, Massachusetts

http://health.usnews.com/doctors/ian-dunn-679627

Phone: 617.755.7150

Fax: 617-734-8342

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Dr Daniel J Lee 

Massachusetts General Hospital 

Boston, Masachusetts

http://www.massgeneral.org/doctors/doctor.aspx?id=18570

Phone: 617.573.3130

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Dr Ossama Al-Mefty

Brigham and Women’s Hospital

Boston, Massachusetts

http://health.usnews.com/doctors/ossama-al-mefty-9691

Phone: 617.525.9451

Fax: 617-734.8342

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Dr Carlos Acil David

Holy Cross Hospital

Burlington, Massachusetts

http://health.usnews.com/doctors/carlos-david-10670

Phone: 781.744.8643

Fax: 781.744.3160

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Dr Gregory Lesnik
The office of Thomas H Lesnik, Dr Gregory LesnikNorwich, Connecticut

http://www.lesnikent.com
Phone: 860.886.1947 FAX: 860.823.1644

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Dr. John Y Lee

University of Pennsylvania-Penn Presbyterian

Philadelphia, Pennsylvania

http://health.usnews.com/doctors/john-lee-22356

Phone: 215.829.6700

Fax:     215.829.6645

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Dr Sanjay Prasad 

Inova Fairfax Hospital

Falls Church, Virginia

Holy Cross Hospital

Silver Spring, Maryland

http://www.earsite.com/about-earsite-and-doctor-sanjay-prasad

Phone: 301.493.9409 (Maryland)

 Fax: 301.493.9429

Phone: 703.352.3758 (Virginia)

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Dr. Ashok R Asthagiri

University of Virginia Medical Center

Charlottesville, Virginia

http://health.usnews.com/doctors/ashok-asthagiri-621501

Phone: 434.243.2757

Fax: 434.243.2774

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Dr Bradley Kesser, ENT

University of Virginia Medial Center 

Charlottesville, Virginia

http://www.healthgrades.com/physician/dr-bradley-kesser-35qnn

Phone: 434.338.6960

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Dr Frederic Tovi Schawartz

Holy Cross Hospital

Chevy Chase, Maryland

http://health.usnews.com/doctors/frederic-schwartz-11296

Phone: 301.652.6621

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Dr Kenneth Hill, Jr.

Emory University Hospital 

Atlanta, Georgia

http://www.emoryhealthcare.org/neurosurgery/surgeons/kenneth-hill.html

Phone: 404.778.5770

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Dr Alejandro Rivas Compo, ENT

Vanderbilt University Medical Center

Nashville, Tennessee

http://health.usnews.com/doctors/alejandro-rivas-campo-768505

Phone: 615.936.3866

Fax:     615-343-9725

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Dr William F Friedman

UF Health Shands Children’s Hospital

Gainesville, Florida

http://neurosurgery.ufl.edu/faculty-staff/our-faculty/william-a-friedman-md/

Phone: 352.273.9000

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Dr Melvin Field
Orlando NeurosurgeryWinter Garden, Florida

http://www.orlandoneurosurgery.com/melvin-field
Phone: 407.975.0200

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Dr Michael Seidman

AdventHealth CelebrationCelebration, Florida

https://www.adventhealthcancerinstitute.com/meet-our-cancer-team/michael-seidman
Phone: 407.303.4000

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Dr Swaid Nofal Swaid

Brookwood Medical Center

Birmingham, Alabama

http://www.doctor.com/Dr-Swaid_Swaid

 Phone: 205.949.1800

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Dr Kelly J Scrantz

Women’s Hospital   

Baton Rouge, Louisiana

http://health.usnews.com/doctors/kelly-scrantz-323957

Phone: 225.769.2200

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Dr. Moises A Arriaga, ENT

Children’s Hospital

Baton Rouge, Louisiana

http://www.moisesarriagamd.com/

Phone: 225.765.7735

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Dr Jacob Hunter
UT Southwestern Medical CenterDallas, Texas

https://utswmed.org/doctors/jacob-hunter/
Phone: 214.645.8300

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Dr Paul William Gidley

University of Texas MD Anderson Cancer Center

Houston, Texas

http://health.usnews.com/doctors/paul-gidley-170800

Phone: 713.792.6920

Fax: 713.794.4662

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Dr Peter Roland, ENT

University Hospital

Dallas, Texas

http://profiles.utsouthwestern.edu/profile/16205/peter-roland.html

Phone: 214.648.3111

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Dr Franco De Monte

University of Texas MD Anderson Cancer Center

Houston, Texas

http://health.usnews.com/doctors/franco-de-monte-7738

Phone: 713.792.6161

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Dr. Wayne S Paullus

Northwest Texas Hospital

Amarillo, Texas

http://health.usnews.com/doctors/wayne-paullus-55042

Phone: 806.353.6400

Fax:     806.358.6766

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Dr Maroun Semaan, ENT  

University Hospitals Case Medical Center

Cleveland, Ohio

http://www.uhhospitals.org/find-a-doctor/semaan-maroun-10432

Phone: 216.844.6000
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Dr. Douglas E Anderson

Loyla University Medical Center

Loyla, Illinois

http://doctor.webmd.com/doctor/douglas-anderson-md-7ce52b58-7f63-4e40-a399-4695669f9947-overview

Phone: 708.216.3208

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Dr John Leonetti, ENT

Gottlieb Memorial Hospital

Maywood, Illinois

http://health.usnews.com/doctors/john-leonetti-9698

Phone: 708.216.9183

Fax:     708.216.4834

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Dr. Bruce Gantz, ENT

University of Iowa Hospital and Clinic

Iowa City, Iowa

http://health.usnews.com/doctors/bruce-gantz-9796

Phone: 319..356.2173

Fax:     319. 356.3967

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Dr Roukoz B Chamoun  

The University of Kansas Hospital

Kansas City, Kansas

http://www.kumed.com/find-doctor/chamoun-roukoz-b

Phone: 913.588.1227

            800.332.6048

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Dr Dennis I Bojrab, ENT

Oakwood Hospital and Medical Center  

Farmington Hills, Michigan

http://health.usnews.com/doctors/dennis-bojrab-3790

Phone: 248.865.4444

Fax:     248.865.6161

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Dr Michael Robert Chicoine

Barnes-Jewish Hospital/Washington University

St. Louis, Missouri

http://health.usnews.com/doctors/michael-chicoine-457211

Phone: 314.362.3577

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Dr Rick Friedman
UC San Diego School of MedicineLa Jolla, California

https://medschool.ucsd.edu/som/surgery/news-events/Pages/Rick-Friedman-and-Marc-Schwartz-to- Lead-Acoustic-Neuroma-Center-.aspx
Phone: 800.926.8273

*Note, Dr Friedman is repeatedly mentioned and received favorable reviews as being one

of the best, most knowledgeable neurosurgeons who treat and remove Acoustic Neuromas.  He 

comes highly recommended.

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Dr Steven L Giannotta

Keck Medical Center of USC

Los Angeles, California

http://health.usnews.com/doctors/steven-giannotta-351623

Phone: 323.442.5720

Fax: 323.442.7543

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Dr Derald E Brackmann

St. Vincent’s Medical Center

Los Angeles, California

https://houseclinic.com/brackmann

Phone: 866.478.8462
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Dr Jon-Paul Pepper

Stanford HealthcarePalo Alto, California

https://stanfordhealthcare.org/doctors/p/jonpaul-pepper.html
Phone: 650.736.FACE

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Dr F Chris Holsinger, ENT United States)

Stanford University Medical Center 

Palo Alto, California 

http://health.usnews.com/doctors/f-chris-holsinger-562048 

Phone: 650.736.1680
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Dr Nikolas Blevins, ENT

Stanford Hospital

Stanford, California

http://health.usnews.com/doctors/nikolas-blevins-44409

Phone: 650.725.6500

Fax:     650.725.8502

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Dr Steven D Chang

Stanford Hospital

Stanford, California

http://health.usnews.com/doctors/steven-chang-3947

Phone: 650.723.5573

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Dr William H Slattery 

Good Samaritan Hospital

Los Angeles, California

http://www.vitals.com/group-practice/california/los-angeles/los-angeles/house-ear-clinic/

Phone: 213.483.9930

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Dr Mark Schwartz

UC San Diego School of MedicineLa Jolla, California

https://medschool.ucsd.edu/som/surgery/news-events/Pages/Rick-Friedman-and-Marc-Schwartz-to- Lead-Acoustic-Neuroma-Center-.aspx

Phone: 800.926.8273

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Dr Manuel Ferreira

University of Washington Medical Center

Seattle, Washington

http://health.usnews.com/doctors/manuel-ferreira-277484

Phone: 206.744.9344

Fax: 206.744.9943

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Mr Rupert Obholzer
The Shard. London, England

http://www.londonbridgehospital.com/LBH/consultant-det/mr-rupert-obholzer/
Phone: 020 3457 6255
FAX: 0844 858 1122
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Dr David Edmond John Le Feuvre - neurosurgeon
& Prof. Alan Taylor
UCT Private Hospital, Cape Town
South Africa

(click on link for contact details) http://www.medpages.co.za/sf/index.php?page=person&personcode=82750
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*If you have had an excellent experience with a doctor specializing in Acoustic Neuromas, feel free to visit the Schwannoma Survivors & Schwannoma Figthers Facebook page, and click on the "Message" button to send us a message with your recommendation - and we will do our best to make sure it gets on the next update of this list.  This list will be updated as new recommendations come in. - Neil

https://www.facebook.com/SchwannomaSurvivorsSchwannomaFighters