AboutDina Q Goldin, Ph.D. Expertise Information and advice for Acoustic Neuroma patients who would like honest patient-to-patient interaction about their symptoms or about treatments and related medical procedures. If you are unsure if your experience is "normal", or are wondering whether your information is complete, feel free to ask.
Experience I am an Acoustic Neuroma patient and the founding editor
of the Acoustic Neuroma Patient Archive (http://www.ANarchive.org).
Expert: Dina Q Goldin, Ph.D. Date: 6/5/2002 Subject: Treatment for acoustic neuroma
Question I am 36yr old and was diagnosed with AN 3weeks ago with MRI. I have spells of vision disturbances, vertigo and imbalance that started 2yrs ago and increased this past year. My tumor is 1.5cm and I have minamal hearing loss but am very concerned about the possibility of facial nerve problems. My understanding is that this risk increases with tumor size. What treatment do you reccomend?
Answer More question: "As I mention in my previous question, I was diagnosed with a 1.5cm AN 3-4wks ago. I live in Minneapolis, MN. and I am under the care of a neuro team at the University of Minnesota. The Neurosurgeon is Eric Nessbaum and the NeuroOtoligist is Sam Levine. It is my understanding that they have preformed hundreds of surguries to remove AN and their goal is hearing preservation when possible. Are you familiar with either of them and do you reccomend them. Also can you reccomend a specialist for radiosurgery near my area. Are there any delayed problems with nerve damage linked to radiosurgery?"
I cannot say anything about these doctors, except to point out that they are not listed on the list of AN surgeons (http://pages.prodigy.net/awiggins/acousticphysicians.htm). If you want a patient perspective on these doctors, perhaps you can find other AN patients from your area; the ANA guestbook (www.ANAUSA.org) is a good place to post your query, AN patients from all over the country read it. See how other patients of your Drs are doing now: do they still have the same job, the same hobbies? do they need to take daily headache medicine? how long did it take before they felt like themselves again?
But please be aware that "hearing preservation" does not mean that your hearing stays the same; it just means that you are not completely deaf. If you ask, your doctors should be able to give you the actual odds for preserving *all* your hearing, as well as for facial problems. Also please be aware that other problems are possible after surgery. They are discussed in the Acoustic Neuroma Patient Archive (www.ANarchive.org).
Your odds for avoiding problems and preserving your quality of life will certainly be better if you find a good radiosurgeon and stay away from surgery. A directory of radiosurgeons can be also found in the AN Archive. Since there is no recovery after this procedure, it is not a problem to travel. In fact, most of AN radiosurgery stories in the AN Archive's patient directory (www.ANarchive.org/directory.htm) are from patients who were treated as out-of-town patients.
As for delayed problems after radiosurgery -- they are all delayed, since nothing happens right after the treatment. Problems, if any, should be minor and temporary. The only exception I can think of is hearing, which might gradually decrease after radiosurgery, and it could take several years to stabilize.
My recommendation are: (a) visit the AN Archive and become familiar with its contents; (b) make sure to have a consultation with a radiosurgeon (phone consultations are often free if you send in copies of your MRIs), so your final decision will be made from a more informed point of view.
