EFFECTIVE 17 FEBRUARY 2007, THIS PAGE IS NO LONGER BEING UPDATED IN ANY WAY.

Many of the links no longer work. It is still being maintained for historical purposes only.

Please visit The Acoustic Neuroma Association to find current information.

Contents

• About This Page.
• What is an Acoustic Neuroma?
• A Personal Story.
• Support Groups and Organizations.
• Mailing Lists, Newsgroups, Bulletin Boards.
• Recovery After Surgery.
• Hospitals and Doctors.
• Glossaries and Definitions.
• Vestibular Disorders.
• Brain Tumors and Neuro-Oncology Generally.
• Related Sites. How to Find Medical Abstracts.
• Support for Caregivers.

About This Page

This web page has been online continuously since January 23, 1996. In that regard, it's a piece of Internet history. Back in the olden days, Yahoo was only beginning to roll and Google was yet to be developed. It took some time to find and compile this page back then.

An acoustic neuroma is also called a vestibular schwannoma, because it affects the cranial nerve that controls hearing and the vestibular or balance system. I have compiled this list of resources related to Acoustic Neuromas (ANs) and their treatment, since my dad had surgery for an Acoustic Neuroma in 1995. I hope that folks looking for information or themselves, a friend, or a loved one will be able to find what they need here. Most people use this page to begin to find information to help them deal with an initial diagnosis.

I have become aware that the effects of surgery can vary from person to person. There are some common problems following surgery and they can be quite upsetting to the unprepared. But remind yourself that this surgery was not even possible with any great success until the last half of this century! This is a benign tumor which you can survive.

These are Remote Links to information provided by (for the most part)universities, hospitals, and professionals. That means that I did not create this information, I am merely pointing you to it. Remember to read everything on the Internet with a critical eye!

I hope I have given credit where it is due. When you go to a link, you will be leaving this page. Best wishes on your journey.

What is an Acoustic Neuroma?

• Acoustic Neuroma Glossary. A glossary of terms which you may encounter when dealing with acoustic neuromas.
• Contents: 87. Acoustic Neuroma. Your tax dollars usefully at work. National Institutes of Health Consensus Development Conference statement on various aspects of diagnosis and treatment of acoustic neuromas. Can be slow loading during US business hours.
• Detection and diagnosis of acoustic neuromas. Discussion of current methodology for detection of Acoustic Neuromas.
• Cranial Base Center at MGH/MEEI/Harvard. The main Site for several of the references listed on this page; awesome compilation. (Acoustic neuromas are in the class of tumors called cranial base tumors).

UTMB Gopher Server [University of Texas]

These links are on a busy university gopher server. Some people have reported that access is difficult. The links are not "dead." In general, if you cannot access the site after attempting the link 3 times, you should probably try again at a different time. The information is useful but quite clinical and may be of the most value to medical students and professionals.

• Acoustic Neuroma Outline. Text outline article about the history and treatment of acoustic neuromas. Excellent bibliography.
• Eye Complications. Summary of treatment of eye problems which can result from surgery.
• Facial Paralysis. Clinical discussion of causes and treatment for facial paralysis.
• Face Reanimation. Discussion of how facial nerve damage can be corrected.

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A Personal Story

• Acoustic Neuroma Surgery:A patient's Perspective. One man tells his the story of his experience with an Acoustic Neuroma and how things turned out. A younger man, possibly not typical, but a well-written diary of his experience and some of the things you can expect.

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Support Groups and Organizations

• Acoustic Neuroma Association. Homepage for the National Acoustic Neuroma Association (ANA) on the Massachusetts General/Harvard server.
• Acoustic Neuroma and Allied Disorders: Support Organizations. Organizations to help those with Acoustic Neuroma, Vestibular Schwannoma, Neurofibromatosis, and accompanying difficulties.
• Local Acoustic Neuroma Support Groups. Lists contacts for support groups.

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Mailing Lists, Newsgroups, Bulletin Boards

• Chronic Illness Resources. (54K: pretty big file) Great resource for Listservs (free subscription e-mail lists) for a variety of disorders. People helping each other.
• http://www.mit.edu:8001/people/samajane/BRAINTMR.html e-mail list (Listserv) for benign, as well as malignant, brain tumors.
• ANA-info Listserv (Free Mailing List). Find out how to subscribe on the Acoustic Neuroma Info page.

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Recovery After Surgery

• Recovery after Surgery. Treatments after Acoustic Neuroma surgery.
• Bell's Palsy. An excellent overview by Mindy Schwartz of Bell's Palsy, which, besides occurring in other instances, is a common after effect of Acoustic Neuroma surgery.
• Facial Reanimation. Online book from the University of Pittsburgh.
• Facial Nerve Center Physical Therapy. University of Pittsburgh's Physical Therapy for facial nerve damage.

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Hospitals and Doctors

Some folks have asked me to link to specific doctors and hospitals. I hesitate to do this because of the endorsement that would imply. Specific information can be had from the above named support organizations. Since I am a lay person and not competent to judge individual hospitals or doctors, I am not going to get into the referral business at this point.

• House Ear Institute. Premier Institute for Acoustic Neuroma surgery in Los Angeles. I have included this one because House is the international pioneer for Acoustic Neuroma surgery. You will probably find that many competent surgeons in other locations have received training at House.
• All In The Family. My dad is putting together a list of doctors and hospitals that perform Acoustic Neuroma surgery. Of course, this is not meant as an endorsement of those included or non-endorsement of those not included. It is a starting point for those who haven't got one.
• American Medical Association. You can find out some information about physicians in your area by using the AMA Doctor Finder. You should go through the home page each time since each visit is treated as a "session." If you try to bookmark say, a specific doctor, it won't work. So if you find information you want, save it to a disk or print it out.

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Glossaries and Definitions

• Acoustic Neuroma Glossary. A glossary of terms which you may encounter when dealing with ANs.
• ABTA's Dictionary. American Brain Tumor Association's dictionaries of medical terms, suffixes, and the medical professions.
• Glossary of Vestibular Terms. Sometimes dizziness can accompany an Acoustic Neuroma or affect a person following surgery. From Johns Hopkins University, Baltimore.

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Vestibular Disorders

• Vestibular Disorders: An Overview. A general survey of balance disorders.
• Dizziness Information. From Northwestern University.
• Desordenes Vestibulares. Spanish version of Vestibular Disorders: An Overview.
• The Vestibular Disorders Association (VEDA).
• Northwestern University Vestibular Laboratory Home Page.
• Otolaryngology Internet Resources. Northwestern University's suggestions.

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Brain Tumors and Neuro-Oncology Generally

• Primer on Brain Tumors. (96K) Extensive text on all types of brain tumors. Includes technical descriptions of brain structure and function, which may be more than most patients want to know.
• Brain Tumor Resource Guide for Patient's, Families, and other Care-givers. Lists associations and organizations which deal with brain tumors, both on and off the web, and how to contact them.
• Neuro-Oncology Resources at Massachusetts General Hospital/Harvard. Harvard Medical School's extensive and well organized links for Neuro-oncology (Brain Tumors), includes descriptions of services and physicians there.
• Other NeuroOncology Resources. Recommendations from Massachusetts General hospital/Harvard.

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Related Sites

• Finding Medical Abstracts. Here is one source for searching through medical articles in The National Library of Medicine shelved in the Main Reading Room (USA). You enter the search terms and get abstracts (summaries) of articles. Healthgate will send you the full text for a fee, which is handy if you live in a remote area and can afford it. The abstracts alone can be very helpful.
• Johns Hopkins Radiosurgery: Acoustic Neuroma. A stereotactic radiosurgery site maintained by Dr. Jeffery Williams. Check my dad's site for more radiosurgery info.
• Neurosciences on the Internet. General neuroscience sites.
• WWW Sites of Interest. New York University's Neuro Department list of interesting web sites. These range from other Medical and Hospital sites to News, Sports, and Classical Music. Take a break from this stuff!

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Support for Caregivers

• Emotional Support Resources. A starting place for caregivers as well as patients.

Critical reading is advised.

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Copyright © 1996, 2003

Created and continuously online since January 23, 1996

Last updated February 17, 2007

Updated June 28, 2002

Updated February 28, 2001

Updated March 23, 1998