Talking to doctors

Surgeons  |  Radiosurgeons

For any team, you want to find out just how likely they are to provide you with an "uncomplicated" (without complications) treatment. It will always be a question of odds, but you want to raise them in your favor as much as possible.

Please realize that you have a right to insist on all this information, and they have an obligation to provide it. Should they seem reluctant to do so, chances are, you want to take your treatment elsewhere.

Also, do not avoid seeking a second opinion just because this is the only doctor who is local!  Nowadays, you can send copies of your MRI to some of the best AN specialists in the country for a free consultation by phone.

Talking to surgeons.

First, ask how many procedures they've done overall, and how many over the last year - specifically for the type of approach you are considering. Their experience is crucial.  When asking surgeons about how many ANs they have done, be careful. Should they include AN cases where they were in the operating room, perhaps as a resident or assistant, but not doing the real tough work?   Probably not.

Then, get their statistics for all possible complications, both in general as well as for your particular situation;  here are some tips to make sure you don't miss anything.

DO NOT LET them get away with giving you their rate of "successful surgeries" - that just means the tumor is out, without regard for the quality of life.

DO NOT LET them get away with "hearing preservation" - that just means you are not completely deaf, though perhaps much worse than before.

DO NOT LET them get away with  talking about "facial nerve preservation", because it is possible to become paralyzed in the face even though the nerve is technically still there.

DO NOT LET them discuss only permanent complications, but temporary ones as well; do you really want to lose months or years of your life battling those temporary but serious complications, if you don't have to?

DO NOT LET them skip things that seem trivial to them, like fatigue or headaches - those can really affect the quality of your life, probably more so than some nerve damage.

DO NOT LET them discuss incidence of operative death only - nowadays, most cases of death due to AN surgery occur 2-69 days afterwards, such as from bacterial meningitis or other infections.

Talking to radiosurgeons

Here are a few questions anyone should ask the place you are considering for FSR or GK

  1. What is the total dose you intend to give me?
  2. How many patients have you treated?
  3. When did you start using this protocol?
  4. What are your rates for:

    Non recurrance?
    Nerve damage?
    Hearing damage?
    Other side effects?

  5. Can you put me in touch with patients treated by you earlier? (Not always possible, but useful if they can!)
  6. (If the tumor is small) Why should I choose to have any treatment for my AN - Isn't watch and wait a more sensible option for me?

The way the questions are answered can be as useful in reaching a decision as the answers themselves; so it's important to be able to ask directly, not though another doctor or treatment centre!

Last Edited: Wednesday, October 30, 2002