Hello!

If you are reading this page, you have probably been referred by the Acoustic Neuroma Patient Archive Organization. 

If you consider yourself an objective, open-minded individual capable of forming educated opinions, please read this letter in its entirety. 

This letter is a response to the Archive Editor, Dina Goldin, of the Acoustic Neuroma Patient Archive Organization after their inclusion of my name in their acoustic neuroma “Hall Of Shame” web page. 

There has been no incident or problem relating to patient care.  The organization simply did not agree with my web page information on acoustic neuromas (taking offense over the lack of detailed information about radiation therapy) and thus, without finding out any more information about the way I take care of patients, subjected to me to public ridicule via their web page. 

Here's the letter:

Dear Archive Editor, Dina Goldin, 

Without doubt, I believe that your intentions are well-meaning.  However your methods are misguided and quite frankly dangerous. 

Posting the names of physicians on a web site labeled "Hall of Shame" is a very serious matter.  You are, in essence, warning all potential patients to stay away from these physicians because they are bad doctors.  Indeed, there may be many dishonest or unskilled physicians who deserve to be on this list. However, there should be due process applied before placing a doctor on your bad list.  In America, people are innocent until proven guilty.

I was quite surprised to find my name on this list.  Having been personally involved in the care of hundreds of acoustic neuroma patients, I have never had any deaths or serious intracranial complications.  No patient has ever complained to me about their counseling or care.  We generally enjoy excellent rapport with our patients.  We care more about the patient and his or her goals than we do about putting another notch in our surgical caseload.  We have been voted into "top doctors in South Florida" for several years running. 

It seems that somebody who ran across my nearly old web page on acoustic neuroma was dissatisfied with its coverage of radiation therapy.  It was this page that landed me in the "Hall of Shame". There was no research. There was no peer review.  There was no phone call, no letter, no e-mail requesting more information. Someone simply decided to be judge and jury and sentence me to public ridicule. 

The damage can be quite extensive.  Not only does it prevent new patients from receiving proper care, it undermines the confidence of existing patients.  It corrodes the doctor patient trust factor.  It undermines the doctor's reputation within the medical community. 

I have analyzed the "Hall of Shame" web page.  As of 8/31/2003, there are four entries.  One is a medical information web page.  The other three are Neurotological surgeons.  Essentially, all the candidates have earned their dubious distinction by not expounding upon the wonders of radiation therapy.

 Here are a few points to ponder. 

1.  I am well acquainted with the other people on the "Hall of Shame" list. All of the listed surgeons, perform acoustic neuroma surgery.  In fact, all of these surgeons have excellent national academic reputations and have written articles and book chapters on acoustic neuroma surgery.  None of the listed ear surgeons actually perform radiation therapy -- which has classically been the domain of radiation oncologists and the neurosurgeons.  None of us profess tremendous expertise in radiation therapy.  Thus, it stands to reason that we would write about what we know best, and leave detailed information about radiation therapy to be given by the radiation oncologists and neurosurgeons. 

All of us, in the course of counseling patients, highly recommend that patients obtain a one on one consultation with a neurosurgeon or radiation oncologist to get to their perspective on radiation therapy.  This way the patient can form his or her own opinions regarding the two modalities and contrast them to watchful waiting. 

2.  Analysis of the various Web pages of the acoustic neuroma patient archive seems to indicate that it is heavily biased towards radiation therapy.  Where are the listings for bad radiation practitioners who try to irradiate 4 cm tumors and cause brain necrosis and facial paralysis? (yes, this does happen -- it is not a myth).  Reading the myths page carefully, http://www.anarchive.org/myths.htm#surgery -- I noticed that each debunked myth about surgery listed is anti-surgery.  Nearly every debunked myth about radiation therapy is pro radiation therapy. 

Certainly acoustic neuroma surgery is no walk in the park.  Serious complications can occur ranging from facial nerve damage to death.  However, there are patients in which surgery is appropriate.  There are indeed patients who do well, who suffer no facial nerve complications, who have excellent hearing preservation, who have no persistent postoperative headaches, and who are leading normal lives after acoustic neuroma surgery.

 On the other hand, I have radiation therapy patients who have had postradiation progressive hearing loss that began six months after radiation.  Some have postradiation facial nerve weaknesses that began six to nine months after radiation.  There are others that have post a radiation chronic dizziness and vertigo.  I would not say this is the norm since many radiation patients do fine.  However, bad things can happen in either scenario.

 It is obvious that your web site is disenchanted with surgery and pro radiation.  You take offense to easily to writings that don't mention much about radiation therapy.  This raises doubts about your objectivity. 

3. It astounds me that you have placed prominent surgical centers of excellence in your "Hall of Shame".  The House Ear Clinic arguably has the largest experience with acoustic neuroma patients in the country.  They have been great innovators in the field.  If the top centers in the nation belong in your Hall of Shame -- how bad must all the other surgeons be?  If the patient is appropriate for surgery but then been scared off from obtaining care by your web site, you have done them a great disservice. 

(I did notice that your site says the House Ear Clinic is highly recommended for patients who need surgery in italics.  This can only be taken as sarcasm because if you truly thought that they were a great institution, you would not have placed them in the hall of shame -- particularly if your only quibble was over semantics.) 

4. You imply that the physicians listed are deliberately misleading the public for their own personal gain.  Speaking for myself, this could not be further from the truth.  Where is the basis for your accusation?  Have you ever spoken to me?  Do you have access to the large number of acoustic neuroma patients that are simply observing their tumors on my advice?  Do you happen to know that, within my medical community, I have a reputation for being conservative in recommending surgery? 

5. The danger of your "Hall of Shame" web page is that if it is not well researched and verified, it is irresponsible reporting.  A great body of acoustic neuroma patients will view your pages as an authoritative source of information.  You owe it to them to uncover the truth -- and you can only do that by contacting the physicians in question. If you choose not to do so, you are guilty of that which you decry. You are misleading the public. 

My request is that you thoroughly investigate the physicians that you want to put on this list.  If you find their writings objectionable, ask them to explain.  Have an open mind.  It is quite possible these doctors and researchers have had experiences that you do not know about. Give people the benefit of the doubt. Not everyone who holds a negative opinion towards radiation therapy needs to the listed in your Hall of Shame. In the meantime, it would only be right and morally responsible to remove all of the listings until you have proven them guilty beyond the shadow of a doubt.

 Sincerely,

John Li M.D.