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 Iím not qualified to make medical judgments, some questionable patients remain in the "purgatory" file or as they last were, particularly, if they didnít respond. . What I didnít know I didnít 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 Radiation Oncology Center and began their program after Dr Lederman's SIUH program which was established in 1993. So the contributing Johns-Hopkins constituency for this study is about 20% of the total patients treated by Williams-Rigamonte, the treatment mode established by the late Dr. Jeffrey Williams. Johns-Hopkins gives its failure rate at 5% which would mean there should be about 30 failures in all. In my sample there are 8 known confirmed failures. I joined the listserve in 2001 but failures from Johns-Hopkins were not reported until 2003 and since then they have been appearing on more occasions.
Dr. Lederman began his program earlier in 1993 and recently reported he had treated 566 patients to date with a failure rate given as 3%. The 40 patients subscribed here represent only a mere 7% of his treated patients. A 3% failure rate would be 17 failures in total; however there were 11 confirmed failures that responded in this study.
This study has left a lot unanswered and raised many questions, among a few:
- What really constitutes a successful treatment?
- How much goes unreported to doctors?
In reading posts from my "purgatory" (in limbo) files, there are some dismal accounts from patients who are not medical failures but are not having the proverbial "walk in the park". How many of these patients will return to a level they consider acceptable? Do some patients expect too much?
Some have asked what I gained from this. Actually, a lot! Certainly, many patientsí perception of failure differs widely from the medical expectation of merely cessation of growth. Patients vary widely in their tolerance to undesirable post-treatment symptoms. Doctors are only human. Patients vary in their tolerance to specific treatment modes and finally, there are no guarantees in this life, no matter how itís advertised.
This study is by no means is an attempt to discredit the many advantages and benefits of this mode of treatment which has been described and discussed often on these discussion groups.
My data is reported below followed by a breakdown of successful and failed treatments with ensuing observations - all as has been reported by the patients.