Hi Vicent87,
I'm very glad to hear your mom's doing better. Based on your previous posts I know she has had a very difficult time post treatment. In reading your post I was surprised with the quote from the Seattle Acoustic Neuroma Group ( SANG), which is an excellent reference web site, discussing "almost one third of gamma knife patients end up disabled". That didn't ring right with me so I tried to find it on the web site and located it under the view point of treatments section
http://www.anseattle.org/viewsontreatment.htmlIt's a very well written section which identifies the extreme viewpoints and disinformation that AN patients need to navigate through by proponents of any treatment options. The context of the quote they referenced was made by a facility practicing FSR and trying to "sell" people not to have GK whith a blatantly false statement. Very Ironic that one radiosurgery center would try to diss another protocol with such an untrue statement, but hey, there's a lot of wierd stuff out there.
The actual section with the quote you mentioned is:
What are the most extreme viewpoints you may hear?
* The worst view of microsurgery: microsurgeons willing to risk injury to protect incomes and dominance in AN medical services, playing on fears of radiation; patients unwilling to accept better ways of dealing with AN, and compelled to make all patients suffer surgery
* The worst view of radiosurgery: radiosurgeons willing to inflate success rates to promote business and pay for expensive equipment, playing on fears of surgery; patients unwilling to deal with short term pain for long term benefit, and compelled to promote treatments without long track records
* Giving the worst views of other options and the best views of your own option -- the contrast creates an inappropriate contrast that in effect manipulates patients by playing on their fears and hopes
(for example, there is one website for fractionated stereotactic radiation (FSR) which does this: in its risks of treatments section, its only statement about gamma knife (GK) is that 31% of GK patients could not longer work (false information), 2) the only discussion of surgery associates it with death, such a rare occurrence in contrast to the close to 100% of persons who do not die (lack of balance), and 3) claims 100% success rates for FSR with no complications or bad outcomes (more false information). The FSR website in question maintained these misleading fictions at least up through December 2000, as of our last check. The moral: don't fall for hype from anyone. Such views are counter-productive and vacant of foundation. For any negative portrayal, a similar one can be crafted to oppose it. We affirm the good intentions and professionalism of all involved in the fight against AN and other diseases, and we believe that each patient's choice deserves to be fully supported. We believe there is absolutely no merit to the types of extreme characterizations above, and we mention them only because you are liable to encounter them in one form or another in your quest for knowledge on AN.
I just wanted to make sure no one actually took the statement at face value without understanding it's full context.
I also wanted to copy the next sections as they also make some excellent points in how patients need to discern the information they hear from physcians. My own personal view continues to be that people should seek out neurosurgeons that do AN's with both open surgery and radiosurgery as in most cases that eliminates some of the other factors listed below
Mark
From the viewpoints section of SANG
Here are some key points to keep in mind.
Doctors have an understandable preference for their own approaches:
* radiation oncologists generally favor radiation
* neurosurgeons generally favor surgery
* there is nothing sinister about this; it makes a lot of sense that doctors understand and have the most current knowledge of their own fields and tend to favor them; would we be surprised that a naturopath favors herbal medicine or an acupuncturist favors acupuncture? of course not -- what would be surprising is to find a naturopath who favors radiation, or a radiation oncologist who thinks that surgery is really the best way to go
Microsurgeons and radiosurgeons tend to have an out-of-date understanding of each other's fields:
* surgical doctors tend to cite statistics from radiation that go back a decade or two
* radiation doctors tend to cite statistics from surgery that go back a decade or two
* there is nothing malicious about this -- a good assessment on AN treatment rests on long-term follow up, so naturally the current long-term follow up looks at patients treated in recent decades; therefore it is understandable that each field's perception of the other may lag considerably -- it takes the passage of time for newer techniques to be fully evaluated and published
* the modern state of both radiosurgery and microsurgery compared to a decade or two ago is like comparing CDs to cassettes
