AN Book Discussion
reading between the lines
There is a textbook out on Acoustic Neuromas: ACOUSTIC TUMORS, Diagnosis and Management, 2nd edition, which claims to be the authoritative book on this subject. It is co-edited by William House, Charles Luetje, and Karen Doyle. It is supposed to be a testament to their "continuing leadership in the AN field". Here is the blurb for the book:
Updated and expanded, the second edition of this classic text details state-of-the-art surgical techniques, presurgical considerations, and follow-up protocols.
If this is the complete description of the book contents, it may be authoritative, but it cannot be unbiased. This is like the ANA's disclaimer:
The ANA does not endorse any commercial product, physician or surgeon, surgical procedure, medical institution or its staff.
This is also like a Nike spokesman saying he does not endorse any particular style of sneaker, jogging or basketball, or whatever... It does not mean that you can't count on him for info on Reebok shoes!
Isn't it strange that so authoritative a book does not discuss fractionated treatments? FSR has been available since '94, at least. Any authoritative book from late 1996 should have performed the due diligence of finding what seems to be the future of AN treatments and to at least mention the results that have been reported so far, however preliminary. After all, if someone told us they've found a way of jumping out of a plane without a parachute at 10,000 feet, and surviving, and that 3 out of 3 people who've tried it have lived, we would pay attention despite such small numbers.
The following quote is typical of the advice in the textbook, which is mostly meant for other surgeons:
There must be no waffling by the surgeon; rather a genuine willingness to consider questions generated by the patient about alternatives must be displayed and, if indicated, the surgeon must make changes.
At first reading, this may sound unbiased and fair. Yes, indeed, a surgeon must display a willingness to consider patient questions about alternatives -- but for a different reason that we patients may think: if the patient feels the need to get the answers elsewhere and finds a provider of radiosurgery, chances are very good that they will not be back. There are many stories in the Archive to confirm this. So this advice, that the proper strategy for a surgeon is to appear willing to discuss alternatives, is really about maximizing their chances of getting the patient's business.
It is indeed the case that many surgery patients say that the reason they knew surgery is right for them when, instead of avoiding questions about alternative treatments, their surgeons were very "open and honest" in discussing them. And again, it sounds like a good thing. But invariably, such patients quote various AN myths that were told to them by their surgeon, which means that the actual discussion was less than "open and honest".
Here is another quote from the book:
alternative treatments are based on patient age and health, tumor size, ventricular size and cerebrospinal fluid (CSF) flow dynamics, brainstem compression
This sounds like a reasonable statement, but there is unfortunately another interpretation it: unless the above factors indicate a strong possibility of life-threatening surgical complications, then surgery should be recommended... Indeed, there are some surgeons with whom, no matter what the particular situation is, every patient discovers they are precisely the ones who are indicated for surgery. What happens when the surgical complications are not life-threatening, but are still devastating to the patient's quality of life? Patient beware!
And here is another quote:
There is no place for scare tactics or other unethical methods to hustle a patient to the operative room to remove this benign tumor, the surgery for which, though refined, carries the risks of injury to the cranial nerves, brainstem, and cerebellum, as well as death.
Contrary to how it sounds to us patients, this does not advise surgeons that they should help us avoid the operating room when there are alternatives that carry smaller risks. It advices them to proceed "in such a way that you have the patient's consent, so they are happy with their decision, and so they feel they were given enough time and information to decide on their own". The idea is to avoid lawsuits IF the risks do materialize, as well as to give the patient an incentive, as a willing participant, to work harder at overcoming the resulting complications.
The passing nod that is given to radiosurgery in this book is culminated with the following:
Physicians treating patients with acoustic tumors should know about this treatment modality, its known potential morbidities, and the uncertainties of long-term tumor control and long-term morbidity. The physician and the fully informed patient then can proceed with the treatment program that is optimal for that individual.
This paragraph confirms everything I said above. In particular, the need for the patient to know outcome statistics for radiosurgery vs. surgery is not mentioned, yet the it urges surgeons to tell patients about all kinds of "potential" and "uncertain" stuff. This book is not in the business of telling surgeons to fully inform patients, don't let the "fully informed" clause fool you. That clause is legalese, with a very specific meaning, not the one we patients would normally ascribe to it.
I know that some patients will saw this book as an unbiased authoritative resource; but we see it as a summary of AN surgery marketing tactics -- what works and what does not -- shared by surgeons for the benefit of other surgeons, who may choose to use them to attract more patients. We've read too many patient testimonials that mirror this.©
Last Edited: Wednesday, October 30, 2002