Acoustic neuromas, or ANs, are typically very slow growing benign (non-cancerous) tumors which arise on one of the cranial nerves in the internal auditory canal (IAC). If you have one, or know someone who has, there is no reason to panic. You probably have plenty of time to research the various treatment options and find the best doctor. (If the tumor is large and pressing against the brainstem, there is more urgency, but the doctor who made the diagnosis will have told you that already.)

There are basically three options:

1. do not treat it, but monitor for growth or increase in symptoms,
2. remove the tumor surgically,
3. kill the tumor without removing it (radiosurgery).

All these options are perfectly reasonable, including the first: watch & wait. In fact, it is usually a good idea to have a second test done about 6 months after discovery of the tumor so that your particular rate of growth can be established before you make a final decision about treatment. Everything depends on your particular circumstances such as age, other medical conditions, size and position of the tumor, personal preferences, and, very importantly, the experience of the medical team.

You owe it to yourself to find a doctor you trust and who has a lot of experience with ANs, including in the past year or so. Do not rely on the opinion of the first doctor you see. Neurosurgeons are not necessarily qualified to advise on radiosurgery and radiosurgeons may not be qualified to advise on microsurgery. ENTs (ear, nose, and throat specialists) may not have had much experience with ANs at all. It is a very rare condition.

The objective of any AN treatment is to control the growth or get rid of the tumor, without aggravating the symptoms, if possible. If you have lost some hearing in the AN ear, chances are it will not get better and it might very well get worse. If you have balance or facial paralysis or facial sensation problems, the objective will be to make them disappear, or get much better in the medium term.

To start you on your journey of exploration, here is a short list of interesting websites to visit. They have links to many more.

• The Acoustic Neuroma Association (The ANA provides information and resources.)
• The Acoustic Neuroma Patient Archive (The AN Patient Archive provides information and resources.)
• House Ear Clinic (House is a major surgical center for ANs.)
• Johns Hopkins Hospital (JHH is a major radiosurgery center for ANs.)
• Seattle Acoustic Neuroma Group (SANG provides information and resources.)
• Cabrini Hospital New York (Dr Lederman)
  • Cabrini website.
  • Lederman patient stories
  • Email contact:gil.lederman@rsny.org
• University of Pittsburg Medical Center (UPMC is a radiosurgery center for ANs.)

We also have a useful guide to the choice of treatment and a list of questions for your doctors.

This message was prepared early in 2002 as a collaborative effort by patients on the The Acoustic Neuroma Association (ANA) E-Mail List Support Group. If you are not already a subscriber, see how to subscribe. Subscribers to the list are mostly AN patients, both pre- and post-treatment, and they are there to help and support you. You are invited to join the list and just read without contributing if you wish. Or you may ask questions and you will most certainly get answers.