AN Journey and Lessons Learned
so many others with an Acoustic Neuroma, my journey started years
before I knew it. In 1991 I remember sitting in my living room
listening to music through headphones and thinking how the right
channel didn’t sound OK. I assumed that the stereo was broken
and I’d just have to replace it someday. Several months later
I woke up one morning to the chirping of some birds. When my
head rolled over on the left side, I noticed the chirping went
away, but came back when the left ear was uncovered. This was
the first moment that I realized that it was me, not the stereo.
spent some time thinking about it that day and came up with what
I thought was the answer. About a year earlier I had taken a
plane on a business trip when I had a head cold and when I arrived
at my destination the pressure in my ears was tremendous and
I couldn’t hear well for several hours. Well, I must have damaged
my hearing then was my conclusion. Other than being mad at myself
for having done something dumb in retrospect, I had my answer
and there was nothing to do but move on.
1 – Always have a significant change checked out by a physician
instead of self-diagnosing.
years later in 1994 the hearing didn’t seem any different but
there was always a "plugged up" feeling. I complained
about this during a physical exam and the doctor at my HMO scheduled
me for my first audiogram since grade school. This confirmed
that I had some unilateral high frequency hearing loss in the
right ear. The ear looked fine and there was no apparent damage.
Looking for reasons I got a variety of answers ranging from too
much rock music, maybe a firecracker when I was young, to "just
one of those things". What about the "plugged" feeling?
Could something be in my head causing it? I was told that it
was probably just a sensation relative to the loss of hearing.
I wasn’t comfortable with the answers, but I still assumed it
must have been the bad plane flight.
2 – Always take charge of your own health care. I believe this
is particularly true of HMO’s such as Kaiser where the focus
is on finding the highest percentage answer, not the unlikely
one. If you don’t feel good about the diagnosis, get a second
next seven years were fairly uneventful with regular physical
exams and occasional comments about my right side hearing, but
with no real heightened urgency on my part. In 2001, during my
check up I mentioned it felt like my hearing had dropped again
and the doctor scheduled another audiogram. It confirmed that
the right ear had deteriorated in the high frequency range. This
time, however, the audiologist was more proactive and scheduled
an appointment with an ENT who took several tests and scheduled
an MRI. Two weeks after my MRI, I met with the ENT and had the
bomb dropped on me that I had an Acoustic Neuroma.
sure my reaction was no different than anyone else. Fear, panic, "why
me" thoughts raced through my head all at once. My wife,
Nancy, was a great support as she immediately helped me search
the Internet in an effort to better understand this new problem
in my life. We found a lot of tremendously helpful web sites
and slowly began to get a handle on what an AN involved and what
the options were in treating it. While you have to be careful
about the validity of information that is on the Internet, at
a minimum it helps formulate questions to ask doctors.
3: Take advantage of all the resources available to understand
what an Acoustic Neuroma is and what your options are. One
of the best web sites I found was the AN Archive (www.anarchive.org).
next steps were to see neurosurgeons at Kaiser who immediately
suggested surgery and dismissed any discussion of radiosurgery.
They immediately proposed the Translab approach, which would
involve destroying all of my hearing in the right ear. After
further discussion they decided that the sub occipital approach
would be OK to give me some chance at retaining hearing. I also
inquired at to how many AN surgeries they had done and was told
around 400 in 10 years. They were also unconcerned if I waited
another 6 months before deciding. On the way home I had reached
a decision that I wasn’t comfortable with their approach or experience
level and decided that I wanted to seek out real experts to deal
with my situation. Fortunately, my employer’s health care coverage
gave me an option to move into a PPO.
4 : Acoustic neuroma’s are very slow growing. In all probability,
they have been there for several years before they are diagnosed.
Take the time to really understand what your treatment options
are and who the best physician is. Whether you choose radiosurgery
or surgery, look for the best of class and most experienced
doctor you can find.
in the SF Bay Area, I am very fortunate to have to two world-class
medical centers in UCSF and Stanford. I was convinced that I
would find a more suitable neurosurgeon in one of those places.
My next stop was to see Dr Jackler at UCSF who had published
many articles on AN’s and had performed somewhere around a 1000
AN surgeries. He also dismissed the option of radiosurgery for
the common reasons and recommended surgery via the sub occipital
approach. He indicated that while I only had a 10% chance of
retaining any hearing, there was an 85% chance of no facial nerve
damage and a 95% chance of total tumor removal. I was much more
comfortable being in Dr Jackler’s hands than the neurosurgeons
at Kaiser, but was still depressed over the risk levels associated
with the 3 primary objectives of the surgery.
then moved on to Stanford where I had an appointment with Dr
Schuer who was the chief of neurosurgery for a final consult
and intended to make a final surgical decision. This is where
my AN journey made a big curve. Dr Schuer listened to my overview
of previous consults and intended direction and then asked why
I was not considering radiosurgery. This stopped me in my tracks
and I proceeded to outline what I had been told about the risks.
Long term results were not available
2) The need to take MRI’s the rest of your life since the AN was still there
3) Concern over radiation induced malignancy
4) More difficult surgery if the radiosurgery didn’t work
Schuer suggested that I had not received very good information
on these issues and proceeded to bring in Dr Chang who was both
a neurosurgeon and a primary radiosurgeon with the Cyberknife
program. They responded to the issues very effectively by pointing
out the following:
Radiosurgery with the Gamma Knife (GK) had been used for over
30 years with extremely high rates of tumor control. In my subsequent
research it appeared that radiosurgery was more effective given
the amount of tumor re-growth following surgery which mostly
reflected the number of times only a partial removal is done.
2) There is no scientific evidence of radiation induced cancer and in fact
the rates are statistically the same as with surgery
3) The protocol for MRI follow up at Stanford is the same for both surgery
and Cyberknife treatment.
4) There is very little evidence that a later surgery is more difficult in
the hands of a good surgeon. I asked what their experience was and they indicated
there hadn’t been a failure yet to create that situation. I liked that answer
a lot better anyway!!
new information gave me a lot more to think about, which was
particularly difficult given I had resigned myself to undergoing
surgery. I was left in the position that every AN patient eventually
finds themselves. The final lessons of my journey reflect how
I reached my own final decision.
5: Neither treatment option guarantees a perfect outcome or
zero risk. Both microsurgery and radiosurgery have improved
dramatically in the last 10 years, but AN treatment is still
a significant procedure involving cranial nerves and proximity
to the brain.
6: Given lesson 5, I felt the best course was to choose the
procedure with the best odds. The 3 primary goals were tumor
control / removal, facial nerve preservation, and hearing preservation.
I researched several web sites and felt comfortable that the
odds significantly favored choosing the FSR protocol of Radiosurgery
in your physicians is always a critical factor in making a final
decision. A difficulty most AN patients have is the mixed messages
from surgeons favoring surgery and radiosurgeons biased the other
way. My final decision was made easier by the fact that Dr Schuer,
a surgeon, and Dr Chang, who did both FSR and surgery, both recommended
the Cyberknife. In light of their ability to do surgery, I put
a lot of weight on the fact that they felt my best option was
radiosurgery. Dr Chang also put me in touch with several patients
who had been treated with the Cyberknife previously and the ability
to talk with them was invaluable to me.
decision having been made, I mentally prepared myself for the
treatment. Since Stanford was having a new generation Cyberknife
installed, I had to wait several months for my treatment. I drove
Nancy crazy during that period as I kept second guessing my choice
up until the week before I was scheduled. The treatment itself
was done on an outpatient basis over 3 consecutive days before
Thanksgiving 2001. Candidly , the procedure was anticlimactic
compared to the process of getting there. Each day I laid on
the table with my head secured by the custom mask and listened
to the Cyberknife moving around me like a big electronic dinosaur.
While I took the week off from work and took it easy those three
days, the rest of my life was uninterrupted. I went back to work
the next week and resumed by workout schedule the day after treatments.
It couldn’t have been easier.
it was not without some post treatment reactions and problems.
About 2 weeks after treatment I started to have 30-60 second "flashes" of
vertigo several times a week. They were more of an irritation
than a problem, but then at 6 weeks I had a serious reaction
with vertigo and double vision lasting 3-4 hours. Undoubtedly,
this was due to some nerve irritation from the radiation which
was not unusual but was very disconcerting. However, it cleared
up and things have been uneventful since.
what are the results from my choice of FSR to date? This is being
written just short of 18 months after treatment and there have
been 2 audiograms and MRI’s taken since. The results have been
very positive! At six months, the audiogram showed that my hearing
was unchanged and the MRI showed that the AN was darkening and
was slightly smaller in size. After 1 year, the audiogram actually
showed some improvement in speech recognition and in nerve function.
The latter was significant as it suggested that the radiation
dosage had been tolerated well by the nerve. The MRI showed the
AN was essentially the same size, but had turned white again,
indicating scarring. Dr. Chang indicated that my AN was following
the classic progressions of an AN going through necrosis. I look
forward to another positive report in the next month and then
the appointments will be set at longer intervals.
hope that by chronicling some of my Acoustic Neuroma journey,
it will be helpful to those newly diagnosed and looking for the
right choice. There are many things that are learned during this
process and I have tried to highlight some of those that were
most significant for me. In my case, I am very thankful for having
had the opportunity to have been treated by the wonderful physicians
at Stanford and that a non invasive technology like the Cyberknife
was available. When I first started down this path I was resigned
to having a very risky surgical procedure and certainly a loss
of hearing and a possibility of other deficits. Instead, I never
saw an Operating room and my quality of life is unchanged. I
couldn’t be happier with how things have worked out to date.
Month Update: I
had my 18 month check up on 5/7/2003. All signs
continued to be positive. The MRI showed the AN as all white
with some black spotting indicating continued necrosis. The size
was essentially unchanged from the 1 year scan, but is about
20% smaller in volume than the size prior to treatment. The hearing
test was unchanged from the 1 year exam which was improved slightly
from the pre-treatment levels. Dr. Chang was particularly pleased
with this result as less than 5% of FSR patients see hearing
improvement, the general expectation being that it would stay
the same or slightly increase. This is certainly a far better
scenario than surgery offered where deafness was virtually assured
as an outcome. My balance and facial nerve function continued
to be unaffected. I will be checked again in six months but the
evidence is very solid now than the AN is dead and that there
is no negative reaction to the radiation by healthy tissue. It
would be hard to imagine a surgery outcome being anywhere this
Year Update, December 2004: All results continue to
be positive. The MRI scan shows the AN to be slightly smaller
than at 2 years. Hearing remains good and has maintained pre
treatment levels. Balance and facial nerve function also continue
to be fine with no deficits following treatment by the Cyberknife.
following link has some pictures from the last Triathlon I did
this summer which was Treasure Island. http://www.asiorders.com/view_user_event.asp?S=20&EVENTID=4370&BIB=2266 These
show that you can still ride a bike at age 47, three years after
getting treated by a CyberKnife 🙂
Year Update: In December 2005 I had my 4 year
MRI and audiogram post treatment. I met with Dr. Chang and
reviewed the results which continued to be very positive. The
AN still showed up as very “dead” and had actually
decreased a little more in size. This additional shrinkage
was somewhat surprising to Dr. Chang as most AN’s don’t
change in size after 3 years typically. Of course, I’m
always happy to get the news that it has gotten smaller. My
hearing test showed that everything was unchanged from pre-treatment
levels with speech recognition at 100% in the affected ear
and high frequency loss down to about 50 db. The facial nerve
function and balance continued to be perfect as they were prior
to treatment. Overall, the whole appointment was a wonderful
Christmas present! My next update will not be until 2007 as
Dr. Chang as moved me to a 2 year MRI interval.
view pictures of my CyberKnife treatment click here.
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