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This survey concerns only FSR patients.
Surveys of Gamma KnifeTM and CyberknifeTM patients are underway and will be published at a later date.
A PREFACE ABOUT THIS STUDY--PLEASE READ
If you can't wait, skip to the results.
In October 2005 a discussion on the acoustic neuroma mailing list about failure led me to volunteer the contents of my files of the contributing constituency of the listserves from the Johns Hopkins Acoustic Neuroma list and the Acoustic Neuroma, (now AN World) list for analysis. Tumor growth following treatment and life-threatening tumor swelling, particularly that compressing the brainstem followed by surgery was considered the benchmark for failure.
I am a wait and watcher who was diagnosed with an 8m x 15m AN in September of 2001. Shortly after my diagnosis , I joined the Johns-Hopkins listserve and a few months later, the Acoustic Neuroma listserve. For the first two years I saved in hard copy literally every post on the listserve (even a few good recipes!), not to mention correspondance with doctors, listserve posters, patients from the old AN Guest book and AN Archives as well as articles pertaining to acoustic neuroma. Like many of you I sent MRIs off to acoustic neuroma expert centers: Johns Hopkins, SIUH, Stanford, House, and the University of Pittsburgh.
In 2003 I got a new computer and for practical reasons began saving only telling testimonials (both good and bad) MRI reports, and special post treatment problems on my desktop in organized files. As a 70 year old practicing musician, I have pretty much ruled out surgery, but I do have sizeable computer files for many listservers for gamma knife, FSR, Cyberknife, and watch and wait (which I still espouse.)
For this study I gleaned both the old hard copy files and the computer files. Since there are few long-term studies on FSR, I did contact many of the patients from the 90s on the archives and the guestbook that are not regular listserve contributors now. Given the e-mails that have bounced and went unanswered, I am pleased to say that of the ones that replied, all are doing well except for one patient. I made every effort to contact patients when clarification and confirmation was needed. Since I�m not qualified to make medical judgments, some questionable patients remain in the "purgatory" file or as they last were, particularly, if they didn�t respond. . What I didn�t know I didn�t report.
I thank all who responded so graciously with many positive testimonials and with clarification about treatment modes as well as the several who phoned me to elaborate further.
Please read the treatment breakdowns which follow this preface and the ensuing data on success and failure with its observations with an open mind. There are countless acoustic neuroma patients we know nothing about, that have never been on any listserve and there are probably many on these two listserves that never contribute or leave the listserve after treatment to get on with their life. Like many, I have been unsubscribed for weeks at a time when on vacation. It is possible to have missed something important . Some data was lost when I changed computers. Because the lopsided results of this study on FSR depend on the contributing constituency which is strongly Johns-Hopkins, comparisons with other treatment centers would be unfair.
Out of the 153 FSR (and SR) who have unwittingly contributed to my files, 125 patients (81.8%) have had the hypo-fractionated 5 day treatment as given at Johns-Hopkins (2500 rads) and Dr Gil Lederman at SIUH and now at Cabrini (2000 rads, separated by a day). Of these patients 85 are from Johns Hopkins with 40 from SIUH-Cabrini. The remaining 26 are from 6 other treatment modes which are described in the data file breakdown which follows this preface.
Johns-Hopkins has treated approximately 600 patients according to Tammy Cuda of the Johns-Hopkins <a href=http://www
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