To Jon's entry
in the Patient Directory

10 Rules to Live by
for newly diagnosed Acoustic Neuroma patients

by Jonathan Kantor

I write this because of the frequency of newly diagnosed patients coming online desperate to learn what to do. Having a family history of NF2 which is usually characterized by bilateral acoustic neuromas, I have had to deal with my AN, my 28 year old son who has two ANs, and my 16 year old daughter who has one.

Not all my tumors were treated in same way: There have been surgery twice, Gamma once and FSR once. Treatment was decided on the basis of each unique circumstance. Here is what I learned:

  1. Don't panic it will probably work out better than you expect
  2. The worst time is between diagnosis and treatment. You will deal with the after affects of treatment a lot better than the uncertainty you are now confronted with.
  3. Only deal with doctors who are experienced in AN's
  4. Examine all the options (surgery, FSR including fractionnated Gamma, Gamma and other forms of FSR). Each has advantages and disadvantages. Determine which is most appropriate for you. You have to live with the outcome and if you are confident with your choice of treatment it will be easier to deal with the post treatment problems if any.
  5. Always ask for copies of your MRI's and radiology reports so that you can use them for second opinions.
  6. Most doctors who specialize in ANs are very helpful and cooperative and will review your films and reports and offer their opinion. They are compassionate and understanding.
  7. Ask your doctor to show you the tumor on the MRI so that you can have a better appreciation of what all this is about
  8. Contact others who have been there before, either thru the internet, or ask your doctor for referrals to people he/she has treated.
  9. Surgeons believe surgery is the best. Radiosurgeons believe that theirs is the best. If they didn't believe in it they wouldn't be doing it.
  10. Don't rush into any kind of treatment before doing your research. RESEARCH, RESEARCH, RESEARCH, RESEARCH

GOOD LUCK AND HOPE YOUR OUTCOME WILL BE AS GOOD AS WE HAVE HAD SO FAR.

Jon Kantor <jkantor AT videotron.ca>
Montreal
April 2001