over a year since I had FSR with the CyberKnife, and I’m very
pleased with the results. My last MRI showed that the AN is dying,
and has shrunk a little bit. My last hearing test shows that
my hearing is basically unchanged from the level it was at before
I was treated with the CyberKnife.
I’m not eager to have any reason to need Radiosurgery again, but if I ever do,
I will make sure I am treated with the CyberKnife. No fuss, no pain, major gain!
I was diagnosed in April of 2000 with a 2.7 cm x 2.2 cm x 1.6 cm Acoustic Neuroma
(AN) on my right side, but I had already suspected that I had an AN before that,
so it wasn’t as big a shock as it could have been.
In 1991 I complained to my doctor that I was having problems hearing in noisy
environments, along with tinnitus. I belong to a large HMO, so it’s sometimes
difficult to get appointments for special tests in a short time. It took several
months to get scheduled for a hearing test. The Audiologist told me that my hearing
was within normal range. She couldn’t tell me why I had trouble hearing in noisy
environments. She said a hearing aid wouldn’t be of any use to me so I simply
found ways to cope, and ignored the problem.
Over the years I had more and more trouble hearing when I was in noisy environments
and I was really uncomfortable in crowded and visually confusing places (like
shopping malls), so I stayed away from them. I also had a few episodes of loss
of balance and getting dizzy, which I just chalked up to getting old problems.
My first real indication that something was very wrong came in May of 1999 during
one of my business trips to Japan. I woke up one morning and felt like my right
ear was plugged, and my hearing in that ear had pretty much disappeared. Since
I was in a very remote part of Japan, and I was going home in a week, I decided
to wait until I got home to have my ear checked. By the time I got home and recovered
from jetlag, my hearing had recovered somewhat, but the plugged feeling was still
there. I called for an appointment with my doctor, and got one arranged three
weeks later. That’s actually pretty fast for my HMO.
My doctor agreed that my hearing was not normal, and scheduled me for a hearing
test. My HMO moves slowly, and so the appointment to have my hearing checked
was not made immediately. In fact, I didn’t see the Audiologist until March of
2000. I should have raised hell about the delay in getting the appointment, but
I’m really busy (I work full time as a software engineer in Silicon Valley, and
I also run my own consulting business) so I just lived with it. I noticed that
when I was tired the tinnitus was worse. Sometimes I thought I could hear people
whispering behind me. In some ways, finding out about the AN was a relief, because
it meant that I wasn’t going crazy.
This hearing test was much more through than the first one. After the audiologist
was done with all the tests, she came in and told me that I had a loss of hearing
in the high frequencies in my right ear, and some loss of speech discrimination.
I asked if that meant that I would need a hearing aid, and she said that the
test showed that my ear was physically fine, so she was going to recommend that
I be scheduled for an MRI exam to check for nerve damage.
I’m intelligent. I’m very analytical. I’m an intuitive problem solver. As I was
walking out of the audiologists office, my thought process was something like
this: no physical damage to the ear, I’ve got proven hearing loss, there’s possible
nerve damage, an MRI is needed. Oh my God, I’ve got a tumor in my brain!
So, my next move was to do some research. When I got home I started to search
the web for hearing loss, tinnitus, and nerve damage. By the end of the evening,
I was pretty sure that I had an Acoustic Neuroma. I was leaving for another trip
to Japan the next week, so I shared my suspicion with my wife. Telling my wife
I thought I had a brain tumor just before leaving for two weeks in Japan was
not a particularly smart thing to do.
I returned from Japan in early April, and was scheduled to see an ENT to confirm
the results of the hearing test, and possibly schedule an MRI (can’t schedule
an MRI just on the audiologists say so). He checked my ears, asked a few questions,
and checked my balance. He said the MRI appointment would be scheduled in the
next two to three weeks. I had been hoping that I could have the test sooner,
but he didn’t control the scheduling.
I’d never had an MRI before, so naturally I was curious about the equipment,
and how it worked. The techs were nice, but firm. They wouldn’t let me play with
their equipment, so I grumpily acquiesced to their request to go into the MRI
room and lay down on the table. They said it would be a 3 minute scan, followed
by a 6 minute scan, and explained the rules (don’t move your head, don’t talk,
don’t yawn, etc.). I don’t suffer from claustrophobia, but it was somewhat uncomfortable
in the tube. There isn’t much room to spare for me. My arms brushed the sides
as I went in, and I had about an inch and a half clearance between my chest and
the top of the tube. After the second scan, they told me to wait while they checked
something, then said they needed to do another 5 minute scan. I knew they had
found the tumor. After that scan, they just left me in the tube for about 3 minutes
while the radiologist came in and looked at it. Then they pulled me out of the
tube, injected me with the contrast dye, and ran another series of scans. The
radiologist said that he thought he saw two Acoustic Neuromas, and needed the
dye to confirm it.
After the scans were done, I asked the tech if they had found two tumors. She
said there was only one (great relief). I asked if I could see the scan, so she
showed me. I was surprised at the size of the tumor. It looked huge to me.
I was called by the ENT and given an appointment about a week after the MRI.
When I got to his office, he showed me the MRI and told me I had an Acoustic
Neuroma. Since I already knew that, I just asked him what he knew about treatment
options. He said he had very little experience with AN’s, and would send me to
the HMO s Neurosurgery group. I was given my MRI to carry, and told an appointment
would be made for me. I immediately arranged for copies to be made of my MRI,
so I could get outside opinions. My appointment with the Neurosurgeon was 6 weeks
away, so that gave me time to decide on the treatment I wanted.
I had already decided that I did not want surgery, for a lot of reasons. I’ve
had three major surgeries in my life, and each one has been followed by a life
threatening infection. I didn’t want another one. I still have usable hearing
in my right ear, and I didn’t want to lose it. I already suffer from cluster
migraine headaches, and I didn’t want to chance making them worse. I didn’t want
to risk the facial nerve damage that can happen with surgery. Etc., etc., etc.
That left me with a fairly simple choice: which of the Radiosurgery options is
the best for me?
After doing a lot of research on the Web, I decided that I wanted to have FSR
(Fractionated Stereotactic Radiosurgery). I learned that Stanford had switched
to using the CyberKnife, which was developed at Stanford by Dr. Adler and had
just been FDA approved. I did a lot of looking for information about the CyberKnife,
and was impressed by its capabilities. Besides, I’m a techie, and new toys fascinate
me. My prime choice was the CyberKnife at Stanford.
I got a good lead for a contact at Stanford by asking one of the contributors
on the AN Archive that had had FSR at Stanford. Through the contact, I learned
that my HMO would send patients to Stanford, but of course the Neurosurgeon would
have to make the recommendation
Now I was faced with the problem of convincing the HMO neurosurgeon to send me
to Stanford. It turned out that it wasn’t too bad. He understood my reluctance
to have invasive surgery, and agreed that Radiosurgery would be just as effective
in treating the tumor, with much less risk to me. So it was settled. I was off
I met with Dr. Steven Chang at Stanford on June 30, 2000. We had about a 1.5
hour appointment during which he talked about radiosurgery, and I asked lots
of questions. After our appointment, I told Dr. Chang I was satisfied and would
like to have him treat me.
My FSR was scheduled for Wednesday, Thursday, and Friday (7/26 7/28). From the
patients perspective there’ s not much to radiosurgery with the CyberKnife. You
have to get a mask fitted and a setup CAT scan done about a week before, then
just show up on time each day, get on the CyberKnife table, and lie very still
for about an hour.
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