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:
- Don't panic it will probably work out better than you expect
- 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.
- Only deal with doctors who are experienced in AN's
- 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.
- Always ask for copies of your MRI's and radiology reports so that
you can use them for second opinions.
- 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.
- 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
- Contact others who have been there before, either thru the
internet, or ask your doctor for referrals to people he/she has treated.
- 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.
- 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
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