Acoustic Neuroma Patient Archive - Informational Resource

Acoustic Neuroma Myths

Acoustic Neuroma
Treatments

Dealing with the medical establishment

Acoustic Neuromas and your body

Complications and recovery

Acoustic Neuroma Stories

Acoustic Neuroma Links

Acoustic Neuroma World

About us

AN Patient Directory | What's New in the AN Archive | Please help us help others

Acoustic Neuroma Patient Archive ^©
http://www.ANarchive.org

Welcome to our informational web site for Acoustic Neuroma (Vestibular Schwannoma) patients, dedicated to providing you with information, advice, and stories to help make informed decisions regarding your treatment options and other Acoustic Neuroma management issues.

Acoustic Neuroma is a double-edged sword. On the one hand, the expected outcome from Acoustic Neuroma treatment really depends on the choice of treatment and the experience of the team. The outcomes range from permanent disability to no complications whatsoever. A good outcome is never guaranteed; all we Acoustic Neuroma patients can do is try to increase our odds by choosing our treatment from an informed viewpoint. On the other hand, there really are NO Acoustic Neuroma specialists that can give you accurate up-to-date information for all options. You MUST see the provider of each type of treatment separately, have each one give you their statistics and their expectations for your outcome, then make up your mind yourself.

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This site is created and maintained by AN patients; it is affiliated with T.H.E. Brain Trust. Here is a disclaimer.
Comments or suggestions for the AN Archive? Please write to our editor -- we'd love to hear from you!

Acoustic Neuroma Myths ^{EDITOR'S
CHOICE}

Don't panic! [ Italiano ]
The directory of Acoustic Neuroma myths. ^{EDITOR'S CHOICE}
Successful AN treatments and your quality of life. [ Portuguese ]
Can Acoustic Neuroma radiosurgery cause malignancy?
Once you have Acoustic Neuroma surgery, will Acoustic Neuroma be gone?
Preserving hearing and facial nerve - does it mean what you think it does?

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Acoustic Neuroma Treatment Options

Acoustic Neuroma Surgery

Various surgical approaches for AN - pros and cons.
Headaches after AN surgery.
Rushing into surgery: the most common mistake patients make. ^{EDITOR'S
CHOICE}
The importance of finding a skilled AN surgeon. [Italiano]
The common myths about AN surgery.

Acoustic Neuroma Radiosurgery

Too good to be true? A physiologist evaluates radiosurgery for ANs. ^{EDITOR'S
CHOICE}
GK, FSR, and Cyberknife - things you wanted to know (but were afraid to ask). [Italiano]
Gamma Knife Radiosurgery for ANs - an article by Georg Noren M.D., Ph.D.
FSR at SIUH with Dr. Gil Lederman - an exclusive interview and an older article.
GK vs. FSR - some statistics and some considerations.
The complete space of Acoustic Neuroma Radiosurgical options.
International directory of Acoustic Neuroma radiosurgeons.

Other

Directory of complications for AN treatments. ^{EDITOR'S
CHOICE}
Observation (wait-and-watching) may be the best choice for many. [Italiano]
For large ANs, all choices are risky; the combined approach may be best.
The directory of myths about Acoustic Neuroma treatments. ^{EDITOR'S
CHOICE}
Statistics on outcomes for surgical vs. radiosurgical options.
Your MRIs are crucial in the treatment decision process. [Italiano]
Finding out about your AN treatment options is a struggle - patient stories.
Your legal rights as a patient.
Someday, treating Acoustic Neuromas with drugs may be an option. [Italiano]

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Dealing with the medical establishment

Your doctors

Your doctor's experience is very important. ^{EDITOR'S CHOICE}
You ought to see the direct provider of each type of treatment.
Talking to your doctor - what to ask?
What exactly did the doctor say? Here are tips to help you remember.
Finding out about your Acoustic Neuroma options is not always easy - patient stories.
Your doctor has a duty of obtaining your informed consent.
The role of the ENTs for the AN patient community.
International directory of Acoustic Neuroma radiosurgeons.
Art Wiggins' Acoustic Neuroma Physicians page.

Your insurance company

Insurance Q&As for alternative and non-local treatments.
Convincing your insurance company to pay - a patient's story, with documentation.
Patients can get help with their insurance or job discrimination problems from the non-profit Patient Advocate Foundation in Newport News, VA. They also have an online Guide to the Appeals Process.

Social Security Disability

Social Security Disability (SSD) - understanding the system and tips for obtaining benefits.
Obtaining Disability Insurance - advice from an AN patient.
Link to SSD discussion board.

Link to SSD blog and resource center. They have a great "Questions and Answers" section, and also track changes to the disability system.

AN and the Law

Your legal rights as a patient. ^{EDITOR'S CHOICE}
Legal cases: M. Louis, Melanie Fox
The surgeon's duty of informed consent - is it being breached?

Miscellaneous.

10 rules to live by - for newly diagnosed AN patients.
How to get the most out of your MRIs. [Italiano]
Various tests and studies are available for AN patients.
Educating your ENT about current options in AN treatments - a patient's story, with a booklet.

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Acoustic Neuromas and your body

AN symptoms and related conditions

Acoustic Neuroma symptoms - a table and individual stories.
Tips for monitoring your hearing.
Small ANs can spell big trouble for your hearing (if you don't act fast) - Debi Spayd's story.
The symptoms of a VERY large AN are not the usual ones. Here is Marion's story.
Trigeminal neuralgia - the worst headache in the world.
NF2 - neurofibrosis type 2.
Tinnitus - the ringing that won't stop.
Non-traditional AN management techniques - by wait-and-watchers.

Learning more about ANs

Inez Peterson's AN research page.
Resources for doing your own medical research, on- and off-line.
On the size, growth, and anatomy of Acoustic Neuromas. ^{EDITOR'S
CHOICE}
Learning the lingo - Acoustic Neuroma terminology.
The Role of Steroids in AN Management and Recovery
Various tests and studies are available for AN patients.
AN's benign cousins - meningiomas, epidermoids, hemangiomas, and facial neuromas.
The Tumor and Your Body: connections

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Treatment complications and resources for recovery

AN Treatment Complications

Directory of complications for AN treatments. ^{EDITOR'S
CHOICE}
Statistics on rates of complications for surgical vs. radiosurgical options
Acoustic Neuroma treatments and headaches; some have delayed onset.
Central vestibular neuropathy.
Cognitive difficulties and emotional problems.
CSF leaks and hydrocephalus.
Post-surgical use of steroids: watch out for complications!
Lost or altered sense of taste.
Tinnitus (ringing in ears).

Resources for recovery

Tips for successful recovery. ^{EDITOR'S CHOICE}
Caring for eyes that can't take care of themselves.
Advanced hearing systems can help those hard-of-hearing.
Tackling headaches head on.
Dental problems are common with facial paralysis, but can be avoided.
Aromatherapy - an alternative for treating headaches.
Resources to help you with vestibular rehabilitation.
Battling vertigo - vestibular exercises that work.
Non-traditional alternatives to help with recovery - by a therapist.
Brian Lloyd's "One Ear to the Ground" web site is great for post-surgery patients with difficulties.

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Acoustic Neuroma Stories

In the AN Archive

The Archive's Patient Directory has many stories by Acoustic Neuroma patients. ^{EDITOR'S
CHOICE}
Successful Acoustic Neuroma surgeries do not mean being happy - patient testimonials.
Finding out about your Acoustic Neuroma options is a struggle - patient stories.
A collection of poems by Rony Kess-El about his FSR experience.

Other sites with AN Stories

ANA guest book - a treasure of patient testimonials (also see the '97, '96, '95 editions).
CyberKnife Patient Support web site - has stories of AN patients treated with CyberKnife.
Visit Tony's Surgical AN Story site for more patient stories.
ANA's Wisconsin chapter has a homepage with several patient stories.
Some of the other AN Patient sites also contain stories.
Cindy's story has a very thorough description of post-surgery headaches.

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Acoustic Neuroma Links

Pages by AN Patients

International AN organizations: ANA (USA), BANA (England), Denmark, ANAC (Canada), France, Australia (New South Wales), Belgium (french-speaking).
AN World -- we recommend the mailing list for AN patients that can be found there!
Acoustic Neuroma Association of New Jersey
Seattle's Acoustic Neuroma Group - a huge collection of AN-related material
Inez Peterson's AN research page.
Brian Lloyd's "One Ear to the Ground" web site is great for post-surgery patients with difficulties. ^{EDITOR'S CHOICE}
Art Wiggins' Acoustic Neuroma Physicians page.
Acoustic Neuroma patient web ring

Related organizations for AN patients

IRSA, International Radiosurgery Association - check out their overview page.

CyberKnife Patient Support web site - providing support for those who either have been or are considering treatment with the Cyberknife. About half the group were treated for Acoustic Neuromas and the rest a mixture of other lesions.

A site for BAHA hearing device users, run by UK patients.

Al Musella's Brain Tumor site - not just about ANs, but it has some great resources (such as a dictionary and some videos).

Treatment and Therapy Providers

The Acoustic Neuroma Radiosurgery Page at Johns Hopkins Hospital
Acoustic Neuroma Web Site at University of Pittsburgh Department of Neurosurgery.
Acoustic Neuroma Radiosurgery Articles Page at Staten Island Univ. Hospital
Vestibular problem treatment in Washington DC
Dr. Kenneth Ott, San Diego: Neurosurgical Medical Clinic, San Diego Gamma Knife Ctr
Alliance Tinnitus and Hearing Center in Atlanta, GA -- for tinnitus treatment.

Other useful AN pages

Johns Hopkins "What's New" site for AN Research Literature
Jim Kenzig's Acoustic Neuroma links
John Cameron's site on the benefits of radiation - a curious viewpoint
There are several sites with AN Patient stories - see our AN Stories section.
Facial paralysis and reanimation information.
Personal advice from experts on various AN-related topics.

Medical Information Web Sites

MedExplorer - health and medical information center.
Florida Medical Network
Wellness Interactive Network
Health Care Information Resources
Medical Trends medical network
MedSurf, a wed-based health guide
The Health section of OpenHere, resources for the family.

http://www.LIClinical.com. Clinical research studies for gastrointestinal illnesses and more. Contact Long Island Clinical Research Associates to participate in a trial and receive free treatment and test new medicines.

More links

Do you know any places that might want to link to the Archive? Please let us know!

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Acoustic Neuroma World

Our views on some important AN issues

ENTs play a key role in the AN decision process. Here is our letter to ENT News.
Acoustic Neuroma Hall of Shame.
ANA USA - how well does it serve newly diagnosed patients?
The surgeon's duty of informed consent - is it being breached?
Our call for a new NIH consensus statement.^{EDITOR'S CHOICE}
There is data that AN patients are not seeing; we would benefit from more disclosure.
Acoustic Neuroma textbook - reading between the lines.

For reference

International Acoustic Neuroma news.
Acoustic Neuromas in the literature.

Miscellaneous

10 rules to live by - for newly diagnosed AN patients. ^{EDITOR'S
CHOICE}
Contributions by Archivers.
Collection of poems by Rony Kess-El about his FSR experience.

A Time to Heal - prayers and Bible verses by Deb Vellines to help AN patients deal with this diagnosis;

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Acoustic Neuroma Miscellania

Acoustic Neuroma movie - we'd like to see one made!
Severe problems after Acoustic Neuroma surgery: balance, headaches.
The pros and cons of radiosurgery.
A letter to a new AN patient posting for basic info.

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About the AN Archive

The Acoustic Neuroma Patient Archive is a patient-run informational web site, dedicated to providing newly diagnosed Acoustic Neuroma patients with information to help evaluate their treatment options and to make an informed decision. It is affiliated with T.H.E. Brain Trust.

If we have been helpful to you, please consider making a donation -- help us help others!
We are looking for volunteers -- please join our team!
The AN Archive advisory board and the AN Archive constitution
A conversation with the AN Archive editor.
The Archive is always a work in progress; consult What's New section to see what was added since your last visit.
We welcome new listings and stories in the Patient Directory.
Before using any information from this site, please take a look at our disclaimer.

Here are some Dear Editor letters that our visitors wrote... Please write too!

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Before using any information from this site, please take a look at our disclaimer.

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Last Edited: Saturday, October 15, 2005

Acoustic Neuroma Myths EDITOR'S CHOICE

Acoustic Neuroma Treatment Options

Dealing with the medical establishment

Acoustic Neuromas and your body

Treatment complications and resources for recovery

Acoustic Neuroma Stories

Acoustic Neuroma Links

Acoustic Neuroma World

Acoustic Neuroma Miscellania

Acoustic Neuroma Myths ^{EDITOR'S
CHOICE}