Subject:   Internet Postings re Dr. (name not disclosed)
Date:      Tue, 17 Sep 2002 22:41:40 -0600
From:      webgirl@seanet.com
To:           mharris@hmwlaw.com

Dear Mr. Harris:

I am in receipt of your certified letter of September 13, 2002, threatening legal action if I do not remove my web pages on the internet  which reference Dr. (name not disclosed).  In essence,  a big money attorney has used the threat of legal action against me, a disabled person living on SSDI,  to take away my right of free speech, all because a big money doctor doesn't like an opinion of him posted on the web.

Background:

• I was referred to Dr. (name not disclosed) by Dr. Barnickel after she had ordered an MRI as a result of noticing my frequent falls.
• Shortly after learning I had an acoustic neuroma, I attended a brain tumor symposium in Milwaukee sponsored by the National Acoustic Neuroma Society.  At this symposium, I attended presentations by neurosurgeons and radiation oncologists who specialize in the treatment of acoustic neuromas (also referred to as vestibular schwannomas).
• In addition to doctors from across the country and untreated persons like myself, many post-treatment patients attended this seminar.  I saw no horror stories regarding those treated with radiation.  However, I saw many frightening post-treatment outcomes as a result of surgery.  Operating in the area of the brain where cranial nerves are located exposes the patient to damage of those nerves; and when damage occurs, the results can be devastating.
• I returned home determined to learn more about acoustic neuromas to ensure that I made the right decision for myself.  I studied medical research on the internet and coordinated with treatment sites across the country.  This led to the creation of my brain tumor website.  The main page of this website contained a list of links to medical research of interest to me and links to two annotated letters given to me by Dr. (name not disclosed).
• My  journey to learn more about acoustic neuromas involved  my personal experience with Dr. (name not disclosed), attendance at the National ANA Symposium in Milwaukee,  results of the latest ANA Survey, medical research regarding acoustic neuromas, personal reports of post-treatment outcomes on the AN Newsgroup, a visit to the Radiation Oncology Department at the U of CA Medical Center at Irvine, conversations with Dr. Williams at Johns Hopkins, coordination with the U of Texas Medical Center,  visits to the Otology/Neurotology Department at the U of WA, and visits to Radiation Oncology and Otology/Neurotology Departments at Virginia Mason Medicine Center.
• During this journey, I  formed reasonable grounds for belief  that I did not get the best information from Dr. (name not disclosed) and that certain types of radiation are better than surgery for the treatment of acoustic neuromas.
• It became apparent to me that the nerve-sparing technologies of radiation (such as low-dose FSR and IMRT) were  overshadowing the traditional treatment of surgery and that this could be viewed as a threat to the doctor whose life had been devoted to neurosurgery, a completely different specialty than radiation oncology (the other specialty which treats acoustic neuromas).
• The purpose of my website was to share what I had learned, hoping to encourage others to get the best information from the best sources so that they could make an informed choice about treatment.   From the varied information on my brain tumor website, you can see that my motive was just that--information sharing, not maliciousness.  The Disclaimer at the top of my main brain tumor webpage also indicated my comments were informational in nature.
• This same Disclaimer also instructed readers to seek the advice of a medical professional. I wanted readers to do the prudent and reasonable thing, which was to seek the advice of a doctor over and above any comments and opinions I might have.
• Because Dr. (name not disclosed) doesn't like my comments about his letters,  you now are threatening legal action on the basis of libel if I don't remove the letters from my website.
• The statements I have on my website may be negative in part, but I do not believe they are libelous.  I was sincerely offended by sections of Dr. (name not disclosed)'s letter.  And I sincerely believe that a doctor who treats acoustic neuromas surgically should not be speaking to the pros and cons of the various types of radiation treatment but should be referring his patients to a specialist in that area.
• My research leads me to believe that neurosurgery and strong radiation treatment expose the patient to the possibility of post treatment side effects which may have devastating effects on quality of life and that nerve-sparing, low dose radiation holds the most hope for the treatment of acoustic neuromas.
• Regence Blue Shield refused to approve radiation treatment for almost a year, on the basis that neurosurgery was the only medically accepted form of treatment for acoustic neuroma.  It took many months before my insurance company acknowledged that radiation treatment was also medically accepted and had been for some time.  I can only wonder what part a neurosurgeon played in advising my insurance company regarding what was medically accepted and what was not.

• The Disclaimer on the main page of brain tumor website indicated "The articles and opinions expressed on this website are intended for informational purposes only. They are not intended to replace the attention or advice of a physician or other health-care professional."
• The paragraph on my main brain tumor webpage (the one with the link to Dr. (name not disclosed)'s letter) indicated that I had "editorialized" the letter.  When something has been editorialized, it is a common understanding that this means one's opinion has been added.
• At the top of Dr. (name not disclosed)'s letter to Dr. Barnickel, I indicated that "my comments were italicized in red."  I understood  these words to indicate that comments were my personal opinion.
• I  maintain that Dr. (name not disclosed) wrote the  "Discussion" section of his letter based upon his opinion and that I had a right to comment upon on that opinion. It struck me as cold and hypocritical to read the following in Dr. (name not disclosed)'s letter:
• that I had an average of 22.8 years to live
• that my tumor would double every two years
• that it would need to be treated within 12 years
• that there was a reasonable chance that my tumor would grow at a slower rate than average
• and that treatment could be deferred for an extended period of time

Did Dr. (name not disclosed)  have a crystal ball?  And did he consider how I would feel when I read those statements? At the time, I was still very emotional as a result of learning that I had a brain tumor, and I just wanted the thing gone.  Dr. (name not disclosed)'s statements, in my opinion,  described a medical condition that was neither serious nor urgent; and I feared these statements might be grounds for my insurance company to deny treatment.
• Dr. (name not disclosed) indicated in his letter a diagnosis of benign brain tumor, most likely acoustic neuroma.  He also indicated that the chance for metastic malignancy was almost zero.  He didn't include information that acoustic neuromas can, as they grow, press against cranial nerves and the brain stem, causing drastic changes in quality of life and eventual death.  Instead he painted an innocuous picture of my tumor which I thought the insurance company might use to deny treatment.
• Dr. (name not disclosed) also indicated in his letter that my tumor was largely asymptomatic.  This really upset me, because I was the one living with the brain tumor--I was the one with the terrible headaches, the balance problems, and the loss of hearing.  In my estimation, my tumor was not "largely asymptomatic."
• I believed that Dr. (name not disclosed)'s statements minimized the seriousness of an acoustic neuroma and minimized the urgency for treatment.  HMO's and other insurance companies were in the news for withholding treatment as a way of reducing costs.  I was afraid this would happen to me as a result of Dr. (name not disclosed)'s letter, which was now part of my official medical record.
• Dr. (name not disclosed) stated that microsurgical removal gave the best long-term outcome, and he provided me with negative information about radiation treatment.  I believe his statements contradict the medical research posted on my website.  And I believe his personal predictions for the future could be misconstrued as fact, because of his position as a doctor.
• Dr. (name not disclosed) mentioned gamma knife in his letter as a treatment alternative. Research at the Northwest Hospital suspended such treatments as described in Ref #32 on the main page of my brain tumor website.
• Dr. (name not disclosed) estimated the rate at which my tumor could grow, when I believe no accurate estimate could be rendered.  There is contradictory research regarding tumor growth, which is all the more reason that an estimate should not have been rendered as "learned."
• Ref #29 on the main page of brain tumor website mentions the irregular  [growth] behavior of ANs.
• I remember one posting on the AN newsgroup where a young woman experienced extreme growth of her AN within the space of several months.
• Ref #18 reports tumor growth over a relatively short span of time (about 2 years).
• One of the conclusions of Ref #9  was that most ANs do not grow; another conclusion was that tumor growth could not be predicted.
• Dr. (name not disclosed) indicated in his letter that there is a reasonable chance that my tumor would grow at a rate slower than average and that, as a result, I could defer treatment for an extended period of time.
• Slower than average?  What basis could he have for  making this statement?  Isn't there also a chance that the tumor could grow at a faster-than-average rate?
• And is it not true that the size of an AN may remain stable over a period of time, but during that time, the 8th cranial nerve could continue to atrophy, causing an exacerbation of symptoms for the patient?
• Dr. (name not disclosed) asserted in his letter that microsurgical removal gives the best long-term outcome.  My research does not bear this out.  Plus, there is a difference between how the doctor and the patient view outcomes.
• According to Ref #4 regarding the ANA Survey, there are some serious post-treatment side effects worth considering which might lead one to question whether neurosurgery is really the best choice.
• Ref #6 indicates that secretory and taste disorders are frequent after neuroma surgery and these present significant quality of life issues.
• AN surgery which extricates the tumor but causes total loss of hearing in the process is viewed as a success by the surgeon, but the patient must live with this success after treatment.  That's what makes the information from the ANA Survey so important.  What really matters is the patient quality of life after treatment, not whether a procedure has the best outcome according to the doctor.
• Dr. (name not disclosed) indicated in his letter that no treatment including radiation will make my symptoms better, or even remain the same, nor is there evidence that I would do better in the long term with radiation verses surgery.
• Ref #2 (which must be downloaded to read and which has been virus checked) is a recap of post-treatment results for radiation treatment of acoustic neuroma. I believe this data contradicts Dr. (name not disclosed)'s statement.  And when compared to what surgery patients report in the ANA Survey,  I'm convinced that certain types of radiation treatment are better than surgery.
• I also recollect reading something about deaths resulting from AN surgery.  I believe the data tracked the patient from the day of surgery two weeks out.  I don't believe anyone has died in the first 2 weeks after radiation treatment of an AN or had trouble with spinal fluid leaks or infection (both of which are very serious complications of neurosurgery).
• There is an incidence of regrowth with radiation treatment, but there is the possibility of regrowth with surgery too.  I believe the incidence of regrowth with surgically removed ANs is less if the 8th cranial nerve is sacrificed, but what a price to pay!
• Initially I didn't realize that Dr. (name not disclosed) was not a subject expert in the area of radiation treatment for acoustic neuromas; but when I did, I was angry.  Here I was trying to make a decision about treatment for a brain tumor, and the information regarding radiation had come from a doctor who wasn't  trained in that area.  Ethically, he should have referred me to a radiation specialist; but he did not do this.

However, in the spirit of cooperation and compromise,

• I have removed Dr. (name not disclosed)'s two letters from my website.
• I revised the wording of the Disclaimer on the main webpage  (which indicates my comments are informational in nature and which advises readers to seek medical advice directly from a health care profession).
• I revised the paragraph on the main page which contained the link to Dr. (name not disclosed)'s letters; and I indicated that I had communicated with several patients of Dr. (name not disclosed) who thought highly of him.

Key phrases missing?
You indicated that I had deleted "several key phrases" from Dr. (name not disclosed)'s letter.  It certainly wasn't  my intent to purposefully omit words when I retyped his letter.   At the time, I did not have a scanner and had no way other than retyping to get the letter on my website.  Out of curiosity, I would appreciate knowing the particulars of these alleged missing key phrases.

An interesting consideration . . .
In my opinion, it borders on malpractice for a doctor of one specialty to give medical advice to his patient about a second specialty for which he is neither trained nor board certified.  For example, would a board certified radiation oncologist give neurosurgical advice to one of his patients?  I think not, and especially not when it pertains to patient informed consent regarding treatment of something as critical as a brain tumor.  It naturally follows that a board certified neurosurgeon would not give radiation oncological advice to his patient but would refer that patient to the appropriate specialist instead.

Dr. (name not disclosed) did not refer me to a radiation oncologist but chose to speak as a radiation oncologist.  And it appears from Dr. (name not disclosed)'s letter of June 1, 1999 (now removed from my website), that I am not the only patient who received anti-radiation information directly from Dr. (name not disclosed) without being referred to the appropriate expert.

The specialties of neurosurgery and radiation/oncology are as different as night and day.  To my knowledge there is only one doctor in this country specializing in the treatment of acoustic neuromas who is board certified as both a neurosurgeon and a radiation oncologist; and that is Dr. Jeffrey Williams who practices at Johns Hopkins.

In closing:
The internet is a global version of the "great library at Alexandria."  It allows doctors and patients alike access to medical information never before available on such a grand scale. This is quite a different paradigm from the days when the doctor was the "fount of all knowledge" and the patient knew nothing.  Laypersons can now read medical journals on line, search large medical libraries, and network with doctors, researchers, and other laypersons from all over the world.   The internet allows information previously shared between only the doctor and his patient to be shared with "the world."  This has it good points and its bad points, depending on your viewpoint.  My viewpoint is that I have done no wrong.

Information sharing, not malice, was the motive for my website; and I've provided fair and reasonable justification to substantiate the beliefs reflected in red text on Dr. (name not disclosed)'s letter.  But, most importantly, I have a free-speech right to voice those beliefs.

Three things are apparent to me at this point:

• Dr. (name not disclosed) should take more care in the wording of his letters.
• Dr. (name not disclosed)'s patients should be getting information regarding radiation treatment for AN's from an expert in that field, not a neurosurgeon.
• The comments and opinions contained on my website do not meet the legal requirements of libel as contained in RCW 9.58.

Sincerely,

Inez P. Petersen
3306 Lake Wash Blvd North #3
Renton, WA 98056-1978
Telephone 425-255-5543
Email webgirl@seanet.com
Brain tumor website:  http://www.seanet.com/~webgirl/AN_research/mylist.html

List of Documents | Link to attorney's letter | Email Inez