An Open Letter to the ENT Community
In the Winter of 2000, ENT News (an international publication for ENT physicians) printed the following review of this web site, the Acoustic Neuroma Patient Archive:
Finally for a site that is guaranteed to make surgeons boil, visit the Acoustic Neuroma Archive at http://www.anarchive.org. Its blindingly obvious glaring fault (pardon the tautology) is that the information proffered is overwhelmingly anti-surgical in tone. This stance is unhelpful to patient care and benefits no one. When two elephants fight it is the grass that ultimately suffers*. Despite this major quibble, the breadth of this website coverage makes it worth bookmarking if only to niggle your skull base colleagues with.
[Editor: * The patients are the grass here; it is felt we would better off if we were to trust all the claims of the traditional AN establishment, blissfully unaware of their disputed status.]
The letter below is our reply, published in the Spring 2000 issue of ENT News. It was written by the AN Archive editor, in consultation with the AN Archive board.
Dear ENT News,
Thank you very much for reviewing the Acoustic Neuroma Archive web site in your Jan/Feb 2000 issue. We are a patient-founded, patient-run site that is dedicated to providing newly diagnosed AN patients with information, to help evaluate their treatment options and to make informed decisions that minimize their chance of post-treatment complications. Judging from numerous patient testimonials, we are very successful in our mission.
Despite your reviewer's impression to the contrary, surgeons are not our enemy. Rather, we are fighting against the unnecessary suffering caused by the ignorance that is so pervasive in the AN community, as Dr. Gil Lederman has pointed out in an earlier letter to ENT News June/July 1999. Chris Gray's article in one of your mid 1998 editions documented some of that suffering.
We believe that as the diagnosing physician, the ENT community is in a unique and valuable position in cases of AN. Here is a testimonial from a woman in New Jersey USA, dated from this millennium:
My mom was diagnosed with AN last Sept. She had been told that she had nerve damage in her left ear for approx. 10 years. Her hearing had been slowly deteriorating over the years with no other symptoms, until August. At this point she began to experience buzzing in her ear as well as dizziness. She went to an ENT who diagnosed her condition as AN. She went immediately to a surgeon who suggested immediate surgery. Our family was led to feel that this was a rare condition that needed prompt action (surgery was scheduled 2 weeks after diagnoses) I must admit that we did not look into other options or research AN. We honestly understood that this "AN" was very treatable, and that there was little to no reason to worry. My mom went through what we were told was a very successful removal of her "olive sized tumor" Tragically, my mom had a massive hemorrhage at the brainstem less than 12 hours after surgery. Emergency surgery was performed but the damage to her brain had been too severe My mom was 52 years old.
In this AN story, as in most others, the ENT played a key role. Had he been fully informed about ANs and the whole range of treatments, the possibility of this tragedy would have been vastly reduced:
(a) The latest medical consensus is that "ANs are not medical emergencies;" emergency surgery is practically never appropriate, especially when the tumor is small (olive-sized), slow-growing (10 years) and the symptoms are considered minor.
(b) Over and over, research confirms the steep learning curve for this "queen of brain surgeries"; an ENT should not be referring a patient to a surgeon who considers ANs "rare".
(c) It is recognized nowadays that all AN patients should have a chance to consult with providers of various AN treatment options (rather than just surgery or indeed just radiosurgery), so their treatment decision, if any, is made on an informed basis.
The material that is offered in the AN Archive is invaluable to those patients who make the effort to learn about their condition and its treatments. A visitor to our site would have become aware of the above points. They would have found stories from AN patients who have preceded them, to learn from their experience. They would feel confident afterwards in talking to doctors, until they find a solution that they feel will maximize their chance of a successful outcome.
Unfortunately, there will always be those patients who do not get actively involved on their own behalf, for whatever reason. The effectiveness of any web site pales in comparison to the effectiveness of informed advice and proper referrals from the patients' diagnosing physician. Rather than assign labels to our material, I hope that the ENT community will use it to widen their perspective and to appreciate the power that is in their hands to improve (and save) AN patients' lives.
Dina Q Goldin, Ph.D.
Acoustic Neuroma patient
editor, AN Archive, http://www.ANarchive.org
Last Edited: Monday, November 18, 2002