with the AN Archive editor
Below a conversation with Dina Q Goldin, PhD. Professor Goldin is the founder and editor or the Acoustic Neuroma Archive. She is an Acoustic Neuroma patient; her AN story is in the Patient Directory.
Who needs the Archive? Why would any patient select any care but the best they can?
Whis is this an informational site specifically for "for newly diagnosed patients"?
The kind of message that the newly diagnosed patients need to hear is very different from the one that the post-treatment patients need. The post-treatment patients with complications need to be encouraged to keep a positive attitude, to be told that attitude makes all the difference, so they can continue to hope and to look for solutions. Some of their problems can eventually be fixed, others can be improved to some degree; the rest can be helped by making behavioral adjustments to cope with them. For patients whose problems include depression, calls for a positive attitude are particularly important to hear from others.
Though a positive attitude will help deal with problems, it will not help avoid them. One's chances of coming out of treatment problem-free are extremely dependent on the type of treatment, and on the medical team chosen, if any. This is the message that the newly diagnosed patients need to hear. They also need to know that unfortunately, one must be well informed about ANs and their treatments to make a good choice. For example, how many surgery patients realize that a "successful surgery" does not at all guarantee that there will be no permanent drop in their quality of life (even though that is exactly what a naive patient expects it to mean)? Or that the NIH AN guidelines (adopted by the ANA) are based on ten-year old research and do not reflect the state-of-the-art in AN treatments? Or that the rush to be treated is usually unjustified, and decisions can be made without a panic?
I believe that the vast majority of doctors look out for the best interests of their patients.
They certainly would not maliciously cause them harm, but they are only human, with limited knowledge and abilities, and their own interests to keep in mind. We patients play a crucial role in the well-being of our community. The Archive has more on this.
I read in a medical article that radiation appears to be the best therapy in only a minority of cases.
As I understand it, the translation of the above into layman's terms is: the surgical establishment will recommend radiation instead of surgery in only a minority of cases. I totally agree with this statement. However, I do not know a single person who went on to do radiation despite a negative recommendation of the surgeon and regretted it.
Are you really that confident that four or five years down the road you will be totally free of AN or a renewed growth?
I am confident that this possibility is as low for FSR as for GK, and the latest GK statistics show that regrowth is no more likely than for surgically removed tumors.
Aren't there valid concerns about the long term success and safety of radiosurgery, that will take up to 25 years to address with any degree of confidence?
GK has been done for 30+ years and has treated many thousands ANs. FSR delivers less radiation than GK. That should make anyone confident enough about either.
I returned to my practice in just under 5 weeks... But this is not about my success...
Success is a relative notion. For radiosurgery, being out of commission for 5 weeks would be considered a failure. With FSR, I did not miss a day of work, even during treatment. I flew to Europe for a conference the very evening my last treatment ended, was climbing the Alps the day after, and have not slowed down since. And I am not even considered a success, just an average patient. The Archive's Patient Directory has many more FSR stories.
Comments like yours should be delivered dispassionately as they will frequently be read by terrified new patients trying to make a decision.
I believe most of that terror is the fault of their doctors, who often fail to properly explain the implications of the fact that the tumor is benign: that it grows slowly and sometimes not at all, that its presence does not present danger in and of itself, and that they have time to get properly informed about their condition without rushing into anything. The Archive has more on this.
I try to alleviate those fears when I write to new patients. However, I do make them aware that surgery, if performed by inexperienced doctors, can result in disability, and may even result in death. If this scares them into doing their homework, this is what it's intended to do. Better be scared now than permanently disabled later. AN treatment complications can significantly reduce our quality of life, and information is our best friend in reducing the risks.©
Last Edited: Wednesday, October 30, 2002