Acoustic Neuroma Hall of Shame
In this section, we feature people, places, publications, etc. whose words or actions are having a negative impact on the AN patient community, by causing misinformation about Acoustic Neuromas to be propagated among the patients. These are otherwise competent and professional people and institutions, who may have the best intentions in mind, and may not be aware of the negative impact of their words or actions.
Please let them know what you think of it! We hope that by being featured here, with your help, we can get them to stop.
If you find that they have fixed their problems, please let us know -- we'll be only too glad to remove them!
This is a medical information sites that provides information about Acoustic Neuromas, among others. Their AN information can be found in their "encylopedia", which you can find if you search for "Acoustic Neuroma" from the home page. You can also get there directly through the following link:
This encyclopedia, supposedly updated in February 2002, is years out of date when it comes to AN treatments. Here is all it says about radiosurgery:
As an alternative to conventional surgical techniques, radiosurgery may be used to reduce the size or limit the growth of the tumor. [It] is sometimes performed on the elderly, on patients with tumors on both hearing nerves, or on patients with a tumor growing on the nerve of their only hearing ear.
We guess that all the radiosurgery patients featured in our Patient Directory, who are neither elderly nor bilateral, simply don't exist... With this kind of advice, we believe they are in violation of the HON code of conduct for medical sites.
NEUROTOLOGY by RK. Jackler
Dr. Jackler is an excellent surgeon, with a great reputation. He is also an author is Neurotology, an authoritative text with several chapters on Acoustic Neuromas. The wording and tone used in those chapters are far from painting a proper picture of the AN patient world for the doctors that read it to learn about AN treatments. The resulting glibness on the part of doctors is a source of many complaints from the AN patients. Here are some quotes and our comments.
Quote 1: Postoperative complications are relatively frequent following AN surgery, occurring in approximately 20% of patients... Fortunately, the vast majority of complications are successfully managed and the patient recovers without sequelae. (http://itsa.ucsf.edu/~rkj/Chapter/Compl.html)
Most of the problems plaguing post-op AN patients are being classified as "side effects" rather than "complications" and are not included here. This is highly misleading, since it is far from the truth that over 80% of the surgery patients recover "without sequelae" (consequences).
Quote 2: In a survey of 541 members of the Acoustic Neuroma Association (a patient information and support organization), only 5% were unable to return to work following tumor removal. Eight percent reported an inability to resume normal social life. (http://itsa.ucsf.edu/~rkj/Chapter/Quality of Life/Social.html)
What Dr. Jackler does not mention is a much higher percentage of patients who were able to return to work, but only part-time, or to a different (less demanding) job. Such sleight-of-pen may be appropriate for some lawyer building a case, but we believe that doctors should avoid such misleading statistics.
Example 3: http://itsa.ucsf.edu/~rkj/Chapter/Quality of Life/Quality.html
Only those complications that can be measured objectively (i.e., without deferring to the patient's own opinion) are included in this discussion of post-op quality of life (QOL). To properly appreciate and compare the effect of AN treatments on the patients, non-objective QOL metrics are necessary. Furthermore, cognitive/emotional complications of treatment are not mentioned here at all, even those that can be measured objectively (with neuropsychological tests).
Contact: Harry Kershner, LVN, UCSF Acoustic Neuroma Coordinator, Tel: (415) 353-2277
House and Ear Institute, Los Angeles, CA
The House & Ear Institute (HEI) is a leading AN surgical center, highly recommended for those patients whose ANs need to be removed surgically. Their web-based guide to Acoustic Neuromas is considered authoritative information about ANs. It is prominently featured in the Acoustic Neuroma sections of some medical web sites such as HealthFinder, and is often used as a basis of patient advice by other physicians.
Though technically correct, the Treatments Options page of this guide is designed to give readers an impression that they have no treatment choices outside of surgery. For example, it says that
The obvious goal of therapy of any benign brain tumor is to eradicate the tumor while preserving neurologic function.
Here is a dictionary entry for "eradicate":
erad·i·cate [i-'ra-d&-"kAt], from Latin eradicare, from e- + radic- (meaning "root"):
to pull up by the roots, or to do away with as completely as if by pulling up by the roots
We guess that all the radiosurgery patients featured in our Patient Directory, whose tumors are just dead rather than eradicated, must have something wrong with them to have rejected this "obvious" goal. In fact, the radiosurgery patents simply don't exist as far as the HEI is concerned, since this Treatment Options page never mentions radiosurgery by name.
I met with [a surgeon at HEI] who only discussed surgical approaches with me. I was told that I could wait-and-watch or have surgery, primarily trans-lab. I was surprised about it, as the original neurosurgeon that I consulted suggested FSR. When I received his report through my regular doctor, the report stated that radiation was discussed; I know it was never discussed at all.
Last Edited: Monday, November 17, 2003