Please be aware that my comments on this web site reflect my PERSONAL OPINION. The right to have an opinion and to share that opinion is protected by the First Amendment.
My opinion is based on my personal experience with Dr. (name not disclosed), attendance at the National ANA Symposium in Milwaukee, 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 the Radiation Oncology Department and the Otology/Neurotology Department at Virgina Mason.
My hope is that you will seek the best information from the best sources and that your information on alternative treatments will come from specialists in that area. In my view, this is the only way to make an informed decision regarding treatment. In the process, you will form your own PERSONAL OPINION which you will no doubt share with others.
With the great gratitude I acknowledge Dr. Barnickle who had the insight to realize that something was wrong with me. She ordered the first MRI, and for that, I brought her a dozen red roses--not really enough to say thank you to extent I wished.
Subject: Internet Postings re Dr. (name not disclosed)
Tue, 17 Sep 2002 22:41:40 -0600
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.
About posting Dr. (name not disclosed)'s letter with my comments
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
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
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.
I maintain that the comments on my website are my personal opinion,
that this opinion is based upon fair and reasonable grounds, and that I
offer my opinion for the sake of information and not with malicious intent.
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
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
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
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
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
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.
I have a Constitutionally protected right of free speech. I have
a right to have an opinion, and I have a right to share that opinion.
If we must keep our opinions to ourselves, then what purpose would
the First Amendment serve?
However, in the spirit of cooperation and compromise,
You may review the changes I made via the link the main page of my brain
tumor website: http://www.seanet.com/~webgirl/AN_research/mylist.html
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.
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:
I don't want to get in a pissing match over Dr. (name not disclosed)'s letters, so I
capitulated by removing them. However, I have posted your letter
on my website, as well as this reply. If you or Dr. (name not disclosed) wish
to write a rebuttal, I will be happy to post those letters as well.
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.
Inez P. Petersen
3306 Lake Wash Blvd North #3
Renton, WA 98056-1978
Brain tumor website: http://www.seanet.com/~webgirl/AN_research/mylist.html
List of Documents |
Link to attorney's letter |