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Why the AN patients' "Mantra"?
At the top of the Archive, we give the following advice: You must see the direct provider of each type of treatment, have each one give you their statistics and their expectations for your outcome, then make up your mind yourself. We consider this advice to be the "mantra" for informed AN patients. This page, relating the experiences of one patient, is to help you understand why...
You may also want to see testimonials from other patients, underscoring the importance of getting your information "at the source".
In addition, we recommend reading Louis' story. Louis is a physician who became an AN patient, and had to learn about his options like we all do. What he found out is that most of his colleagues were giving him wrong advice!
I have found in talking to most surgeons (neurotologists, neurosurgeons) who do AN surgery, a lot of them are promoting their own because that is what they know, it's only human nature. I have also found that the four neurotologists who I talked with really don't have any knowledge whatsoever of what is involved with radiosurgery. They are not aware of Staten Island, Johns Hopkins or anything much other than the "gamma knife" which they consider to be ineffective unless you are "elderly or infirm." When I questioned them for details about their knowledge of what is involved in radiosurgery, they really couldn't give me any answers. And these were specialists who practice AN surgery weekly!
Maybe, there are some out there who have become educated in what is occurring with radiosurgery today, perhaps those who keep encountering patients who refuse to undergo surgery and they are wondering what it is all about. I still cannot believe that one eminent neurotologist, co-chair of ANA's medical advisory board, sent me some printed materials which were supposedly detrimental to "x-ray therapy for ANs". This term -- "x-ray therapy" -- has to be 20 years behind the times at least. It is never used by the radiation oncologists or anyone involved in radiosurgery today; it is like me calling a refrigerator an "ice box!
I really believe that it takes a lot of education on the part of radiosurgery to convince the surgeons that there may be something out there that is a substitute for the traditional method of surgery. A lot of surgeons are burying their heads in the sand and refusing to acknowledge anything that could be a counter to their methods. One does not find this attitude in a surgeon as far as improved and advanced methods in their own field of surgery, i.e. improved ways of doing hysterectomy, gall bladder surgery, band aid surgery - just to name a few. But they will automatically resist anything that comes in the way of what they believe in even if that belief is a little invalid.
History shows thousands of examples of such things. Electricity replacing the candle, automobiles replacing horses etc. etc. There were always those individuals who hung on staunchly to the candle and the horse and refused to go forward. Most people resist change with a fervor, even if that change involves better methods or easier ways. I see it daily even with computer programs, individuals resisting upgrades and changes just because they find it a little difficult to adjust.
I will not forget the neurosurgeon my insurance company insisted I call for information about "radiosurgery". He appeared to be 100 years old, he did not even know about the specific surgery involved for ANs, and he did not have one clue about what was involved with radiosurgery, gamma knife, peacock, proton beam, stereotactic radiosurgery, etc. His job was to talk me into staying in town and having surgery with one of the local neurotologists. He was not one of the doctors I included in my statement above, those were all AN specialists.
As you can see from my experience, when you are searching for options for your acoustic neuroma, always consult the expert in each individual field. In others words, surgeons (most of them) will not give you or cannot give you good advice about radiosurgery because a lot of them are against it and/or appear not to know much about radiosurgery. There probably are some surgeons out there who are objective about new treatments, but it still a good idea to obtain most of your information from the providers of those treatments (radiosurgery, gamma knife, proton beam etc.) instead of taking the word of a professional who is not involved in that particular kind of treatment.
Lynne Shewmaker
22 August 1998
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Last Edited: Friday, November 01, 2002