In an attempt to further my
depression today, I looked up statistics. Apparently, brain tumors are not as
rare as I thought. According to the
brain tumor association (ABTA), an estimated 64,530 new cases of primary brain
tumors are expected to be diagnosed in 2011. (Primary means it starts in the brain.
It does not include brain tumors resulting from cancers in other parts of the
body that has spread to the brain.) These values are extrapolated from previous
statistical censuses done in 2004. In an incidental MRI study by Katzman et al
published in the Journal of the American medical Association, after testing
1000 volunteers with no brain tumor symptoms, two primary brain tumors were
found and diagnosed. So, brain tumors with no symptoms, like mine, are also not
as rare as I thought. (0.2%)
Instead of a self-indulgent pity
post, this time, I will share my step by step experience. I had no idea what to
do after my diagnosis. But I did it. The following is how I did (up to this
point anyway) so if you are one of the other 65 thousand maybe we can compare
notes. And if you are new member of the brain tumor club, maybe you can get a
feeling for what you are in for.
Step one: Picking a neurosurgeon:
I panicked when my boss told me I had a brain
tumor. The only thing that kept me from screaming and crumbling into a goop of
nothing was that my boss, who is a doctor by the way, told me I have to get a
clinical MRI and see my doctor. He didn’t tell me as soon as possible but
c’mon. Like I was going to wait. After stopping at my mothers work to ruin her
day, I drove to my general practitioner at Chapman medical center.
When I got to the
medical center, it was empty. I guess they have their lunch from 1pm to 2pm
instead of at noon like everyone else. I asked the medical assistant when my
doctor could see me.
“Not for another couple of
weeks” she explained. “And all the other doctors at the center are booked.”
Despite several minutes of me
pain snakingly trying to explain that I needed to see a doctor immediately, the
answer did not change. She just kept repeating with an increasing degree of
impatience
“No available time for two
weeks. If this is an emergency please go to the emergency room.”
And wait 3 hours for nothing, I
don’t think so. Feeling defeated, I took a step back and dropped my proverbial
bomb. “Look I just found out I have a brain tumor, I need a doctor so I can get
an MRI and figure out what I need to do next.”
The poor medical assistant
either didn’t hear me or was caught so off guard; she was convinced that she
heard me wrong.
“What?!” she said
louder than I think she intended. I repeated myself but the repetition was too
much and my eyes started to water. Before one tear could formulate, she was
feverously at the computer. After a few minutes she started asking me questions
that I couldn’t give two shits about. Do you have a preference for a doctor;
yours is on vacation. I didn’t. Do you prefer a male or female? I don’t. After
twenty more minutes of questions that were not at all significant she made me
an appointment in one hour. Apparently, there
were some available times.
I guess I should mention that my
mother and fiancé were with me when I was making this appointment. They stood
behind me and let me make all the decisions and plans. They took the back seat.
It could be argued that they held back because they knew that’s what I needed.
But honestly, it was probably because they really didn’t know what to do.
Either way, I was glad that they were there. And I was glad they didn’t get in
the way. I don’t know how I would of felt if they kept on budding in with
opinions. And, in hindsight, dealing with the situation myself empowered me in
a way that’s hard to explain. (When I say empower I mean in terms of my health
care. I am not going to make the argument that it made me overall stronger because
that’s just ridiculous.)
After I saw my doctor, and after she did brain
tests that she told me she hadn’t done since medical school (Apparently one of
the 60 thousand have not seen her), she referred me to a neurosurgeon. The
nurse actually called herself to make the appointment for the MRI and doctor--
an unforeseen benefit of being a part of a small group and a small hospital. It
took her 20 minutes and she made it happen. The next day, I was to see a Dr. Noblett at
St. Joseph’s hospital and have my MRI right after.
St. Joseph’s Hospital
is really close to my house and really familiar. Not only was I born there but
it is where I candy stripped (volunteered in a ridiculous red stripped apron)
when I was high school. The building housing the neurosurgeon’s office is right
next to the freeway and separated from the rest of the hospital. Before my
appointment, I did not know it was a part of the hospital until I got there.
The office itself is on almost
the top floor of the building. The elevator was full when I started at the
ground floor but I was the only one left when I reached the top. Unlike other doctor’s offices, the furniture
and decorations were all high end and expensive looking. Not the stale blue
chairs I had seen peaking past the elevators as I stopped at each floor.
The office was empty of patients. An excessive
amount of medical assistants greeted me as I entered with smiles (weird) and
asked me to fill out the standard forms. (ok they were not standard. They were
really weird. Tests that I think would make any person feel incredibly
paranoid. I mean sometimes I get a little itch on my face. Would you
characterize that as an electric feeling?—apparently not but I didn’t know that
at the time and marked the box. The neurosurgeon went over it again and it was
incredibly informative. My hypochondriac tendencies, in this case, made the
appointment more thorough.)
Dr. Noblett was
confident and well-spoken and really good looking; I hope my fiancé looks that
good at that age. He had an incredibly calm voice and spoke in simple terms
without being condescending. He began with explaining what he believed I had.
From the images that I got from work, the
tumor was consistent with epidermoid features and considered large. I did not
have symptoms and for this reason I could postpone the surgery but would have
to have and MRI every 3 months. Eventually, within a year, I would have to have
surgery.
At this point, in the meeting, I
think I kind of went into shock. My whole body went numb and, at the envy of
every yoga enthusiast, my mind went blank. I guess that my fiancé and mother
noticed (I didn’t mention that they met me there. They did.) because they
started asking questions. And luckily they both took thorough notes.
I
then went to get my MRI. As they bundled me up and sucked me up into the surprising
narrow tube (how do fat people fit?), I was still in disbelief. I could not
believe this was happening to me. By the way, MRI’s are loud and done in a
really cold room. If you ever get an MRI say yes to the blankets.
When
I went home, I looked up more neurosugeons. I found them by typing in “Best
nuerosurgeons in the US” into the search engine. The first link google gave me at the time was
a listing by USnews (
http://health.usnews.com/top-doctors/directory/best-neurosurgeons).
It was an incredibly user friendly website. I could type in my home zip code
and get a listing of the best doctors in my area.
… I should note that I have no idea how this list is
made. It could be total bull. By I had nothing else to go by, so f it. …
Ultimately, I picked 3 additional neurosurgeons: Dr. Yu
at Ceder Sinai, Dr. Linskey at UC Irvine, and Dr. Young at UCLA. I went onto each hospitals website and called
and made appointments. Here was my
experience:
Dr. Yu: As soon as you walk into the narrow waiting room
you are accosted by a large glass placard naming large contributors to the
center. I was in a place paid for by Denzel Washington, Oprah Winfrey, Forest Whitaker,
and the Kardashian foundation among others. It really threw me off. I have a
brain tumor. Why the fuck do I care that these famous people made themselves
and their accountants feel better by writing a check to this place? As an added
formality, all the individuals checking me in were dressed in matching black suits
and working in visible cubicles. My brain tumor had been graduated to a
Hollywood business interaction.
I filled in my paperwork and agreed to pay out
of pocket for my visit; Dr. Yu does not accept HMO insurance. We sat in the
tiny narrow lounge with no windows. Unlike my experience with my local
neurosurgeon, I was not the only person in the room. There were several elderly
people with drooped faces (looked like they had had strokes). None were reading
the three hundred copies of sport illustrated or golf available. They all just
sat there taking turns staring at each other. I guess I was sort of doing the
same thing.
After
about ten minutes they brought me into a small examination room. A neurosurgeon’s
assistant came and did the function tests on me. (Apparently that triangle rubber thing to get
your reflexes to work actually has a purpose.) She then took a medical history
and as quickly as she came in she left.
For two hundred and thirteen
minutes nobody came. My fiancé, my sister, my mother and I just stared at each
other, counted the seconds, and twiddled our thumbs. I memorized the two
posters about strokes posted on the walls and read each pamphlet next to the
sink. My fiancé got increasingly more nervous, pacing the 4’ by 4’ room to the
best of his ability.
When the neurosurgeon finally
came, he got right into talking about my tumor. He never sat down. And instead
of speaking to me he spoke directly to my mother. He explained to her the
difficulty involved in its removal (mainly because of its location) and his
nervousness about causing any permanent damage. He told MY MOTHER to wait and
watch the tumor and not to have surgery. (WAIT!!! Did he not know there was
this unwanted mass in my brain!!!) And worst of all he told HER that he, even
if I chose surgery, would not be able to get all of it (he estimated being able
to remove only 90%).
I was surprised at his
recommendation. And his disregard of me for that matter. The neurosurgeon at my
work and my local neurosurgeon wanted to get the tumor out now. The shock wiped
my mind blank. After he gave his ten minute run down, he asked if I had any
questions. I asked a few. All of his answers were short, quick and nonspecific.
Before I knew it the
neurosurgeon shook my hand and left the room. The whole interaction was so
quick it made my head spin. Then I got my bill. And my head exploded. They
charged me the full time I waited. A 3 and a half hour visit. I couldn’t
believe it.
Realizing their error the black
suited businessmen of the office would call me to refund part of my visit.
BUT!!! Cedar Sinai would later recharge me for this visit an additional four
times. On accident, they realize each time I call them but still. In short, there suited medical assistants
suck.
***I would later find out that
Cedar Sinai has been having a huge problem with Staph infections among their surgical
patients. Apparently, to save money they have switched from stainless steel to
nickel plated equipment.
Dr. Young: The neurosurgery office is on the basement
floor of a small building separate from the hospital. The furniture, carpet,
and walls were all a pale shade of blue. (Go Bruins! I suppose.) The
neurosurgery and neurology waiting rooms were separated by a half wall. The
neurology side of the room was full. The neurosurgery side consisted of me
sheepishly longing to not be the only person sitting there.
Everyone
who works there appeared to be in their late twenties and early thirties.
(Including my neurosurgeon) Alarm due to the youth quickly dissipated with interaction.
The boy checking me in was patient and helped me fill out my paper work
efficiently without being crude or condescending. A young lady came and pulled me aside and
while taking my blood pressure asked me if I had any preferences toward my
appointment; if there was any information I would like to give in privacy away
from the people I came with. The attention towards my privacy and desires was
incredibly refreshing and immediately put me at ease. Then after a quick ten minute wait the
neurosurgeon brought me back to the room and began my appointment.
His
age or my familiarity to doctors’ offices gave me a huge push of confidence
during this appointment. I asked him poignant questions and was quick to let
him know my priorities and concerns. I pushed him to get as much information as
I could. (The day before I actually goggled questions to ask him and picked
what I felt was important.)
He
answered most of my questions thoroughly. But his descriptions of my tumors
consistency and appearance varied greatly from the others which prompted me to
ask “How many tumors like mine have you operated on?”
He
answered, “That is not the right question to ask. Instead you should be asking
me if I have done surgery in that part of the brain before. The answer is yes,
many times.”
I
did not like this answer and pushed to get some sort of indication of
experience or familiarity. He wouldn’t give it to me. And instead gave me text
book definitions I had found myself after googling my diagnosis. I have to give
ti to him though. He was incredibly confident when he gave me these
answers.
Dr. Linskey: The UCI medical center is across from a
large outdoor mall and right next door to a juvenile detention center. The Neurosurgery
office is the first floor of a building almost fully made of windows. UCI had
over-nighted my paperwork to me and I had filled out the same forms I had been
filling out the past week before hand. I waited about 20 minutes and a nurse
brought me into a small room to take my vitals.
Shortly
after she left, a medical intern (about the same age as I—25 or so) came and
did all my function tests. She was incredibly bubbly and almost obnoxiously
positive and smiley. While her demeanor annoyed me, her interaction with my
neurosurgeon was strangely comforting.
Dr.
Linkskey is a short chubby man with little chubby fingers. When speaking to me
and going over my images he sat in a stool at my level and spoke directly to
me. He was able to treat me like an
adult while making me feel like he would care for me like his child. He care
and comfort with his young intern seemed to confirm my feeling.
But
probably most importantly, he said he could get all of the tumor out. He
listened to al lmy concerns and was willing to consider them in making
decisions. He didn’t make me feel silly or uncomfortable. This was my longer
appointment; an hour and a half but almost the most conforting. He didn’t dumb
down language that he thought I wouldn’t understand. He did not try to use
metaphors. (Neurosurgeon’s metaphors are a great reason for conspiracy
theorists to believe that they are stupid and useless.) And he answered all my
questions directly.
Ok, so here is my quick assessment of all the
neurosurgeons
Neurosurgeon
|
Hospital/ description
|
Pros
|
Cons
|
Noblett
|
St. Joseph’s Medical Center/
small private
local hospital
|
Personable. Kind. Patient. Treated me as an adult.
|
Unfamiliar with my type of tumor. Small hospital with
fewer resources. My surgery doesn’t happen there that often. Nurses at the
hospital are notoriously unkind.
|
Yu
|
Cedar Sinai /
large Hollywood private hospital
|
Big famous hospital of the stars. Fancy looking rooms.
World renowned neurosurgeon(according to US news).
|
STAPH INFECTIONS COMMON AMONG SURGICAL PATIETNTS. And
incredibly insincere atmosphere
|
Young
|
UCLA medical center/ large public highly ranked
hospital
|
Great personable staff. Best (according to ranking in
USnews) neurosurgery hospital near me.
|
Inexperienced neurosurgeon. I don’t want to be the one
to pop his epidermoid tumor cherry.
|
Linskey
|
UCI medical center/ medium sized public local hospital
|
Kind. Personable. Friendly. Experienced. Neurosurgeon
ranked highly (according to USnews.)
|
Smaller hospital.
The neurosurgeon appears to go on vacation a lot.
|
I picked Linskey.
