A Personal Account Of Seeking Treatment For Acoustic Neuroma

Choosing a Treatment For My Acoustic Neuroma

In this section, I describe in detail how I came to be diagnosed with an Acoustic Neuroma and how I decided to treat the tumor with Cyberknife. I describe the research I conducted, my consultations with numerous neurosurgeons, and my analysis of the different treatment alternatives that were available to me as an Acoustic Neuroma patient.

Initial Symptoms (top)

One day, some time in April 2007, an odd sensation of numbness materialized on the right side of my mouth, as if my right lip had been novocained. The sensation came from out of the blue, and I didn't think much of it. But then a week went by, and then a month. And the numbness remained. It even intensified a little.

Around the same time, I came down with mild bout of bronchitis and I decided to see a doctor to get some antibiotics and while I was at it, ask him about this bizarre tingling around my right lip. My doctor quickly wrote the antibiotics prescription, but the numbness stumped him. He poked at my face with a sharp object for a while, asked a bunch of questions, muttered a perplexed “hmm” every few seconds, and then referred me to a neurologist for further investigation.

The first available appointment was about a month later, so I continued going about my business. Except that gradually, a vague sense of "not rightness" began to take hold in my upper body. The facial numbness began migrating, shifting and evolving from day to day. I began to feel tension in my chest, like my heart was working harder for no apparent reason. I became restless and ill-at-ease. Increasingly concerned, I called my neurologist’s office for an earlier appointment.

The neurologist visit was brief and unremarkable. She conducted some motor and vision tests, all of which went fine (or so she told me). To get to the bottom of things, she ordered an MRI of the brain. I had the test a week later. By then, I knew something wrong. I just had no idea what it was.

On the morning of Thursday, July 19, 2007, two days after the MRI, I received a phone call at work. It was my neurologist. “How are you feeling?” she asked with a note of concern. From my response – a moribund “I’ve been better” – she could tell I hadn’t yet heard from my primary care physician. “Oh, you haven’t been told yet…?”

Diagnosis (top)

In a matter-of-fact tone, she laid out the facts: I had a fairly large tumor on the right side of my brain, measuring about 2.5 cm in diameter. It was called an Acoustic Neuroma and was almost certainly benign. I needed to consult with a neurosurgeon as soon as possible about treatment. She gave me the name and number of a neurosurgeon in my medical network – Dr. Gabriel Hunt – and told me to call his office to make an appointment. She asked if I had questions. I stammered and asked some rudimentary questions and scribbled the words "acoustic neuroma" on a notepad.

I hung up the phone, alone in my office. I went to a colleague's office for a work-related conference call, which I sat through in shell-shocked silence as my mind drifted to strange and frightening places. I returned to my office, closed the door and breathed deeply, a gathering sense of panic rising within me.

I realized that I needed to speak to an expert quickly to find out what all of this meant. I called Dr. Hunt’s office to make an appointment, but the first opening was four days later, on Monday. It was only Thursday. My heart sank in despair. There was no way I would survive the weekend without speaking to a specialist.

I googled the words “Acoustic Neuroma” and saw references to brain surgery and hearing loss, vertigo and facial paralysis. The reality of my diagnosis began taking root. My symptoms, which had been vague and diffuse, suddenly became more pronounced. The growth in my head seemed to come alive.

I left work and drove myself to the emergency room.

My First Consultation (top)

In the waiting room, I watched people of all ages and colors filing in and out, seated patiently in chairs lined against the walls. I thought how odd it was that none of them could see the growth in my head, and I wondered what hidden afflictions they and loved ones were enduring.

When I was called, I told the attending physician that I had been diagnosed with an Acoustic Neuroma and that I needed to speak to a neurosurgeon. “I think we can arrange that,” he said, to my enormous gratitude.

As it happens, Dr. Hunt, with whom I was scheduled to meet the following Monday, was at the hospital performing surgeries and agreed to see me in the ER. As I waited, the ER doctor conducted some routine exams and did a commendable job trying to reassure me. “I know this sounds nuts,” he said, “but of all the brain tumors to have, you picked the right one.” I chuckled absently, still feeling as if I were living someone else’s tragedy.

I was lost in these thoughts, still somewhat numb, when a young man strode over to me with a beaming smile. “Dr. Gabriel Hunt,” he said, shaking my hand vigorously. He must have read the despair in my face because his next words were: “You’re going to be fine.”

I could not help my initial reaction, which was disappointment at Dr. Hunt’s youth. He seemed to be in his mid or late 30s, just a few years out of his residency. I did not want my brain to be a training ground for a young, up-and-coming surgeon, however promising.

I braced myself and tried to learn as much as possible.

Dr. Hunt confirmed the Acoustic Neuroma diagnosis. The tumor is not malignant. It is a slow-growing tumor – the average growth rate is 2 mm per year – which means it probably has been growing in my head for many years. It is not life-threatening, unless allowed to grow unfettered. They are fairly common as far as brain tumors go. There are no known causes (cell phone theories are speculative and unproven). Due to the location and size of my particular tumor (2.5 cm or so, extending out of the ear canal towards the brainstem, though not compressing it), my tumor would have to be surgically removed.

My mind was reeling. Brain surgery?

Then he told me, almost offhand, that I would lose all hearing in my right ear. My chest seized and I grabbed the doctor’s arm. What?

Yes, he explained, due to the nature of the surgery, my right-side auditory nerve would almost certainly suffer irreversible damage. Yes, he was sure. No, there was really no way to avoid this.

All of my life, illnesses had been temporary setbacks, minor inconveniences that came and went, leaving nothing but a day or two of discomfort in their wake. But there was no pill or ointment that would make this tumor dissolve and go away. Even removing it in surgery would not make me whole. The tumor would leave its mark, exact its tribute. My life would be permanently marred by this random stroke of fate. It was unbelievable.

Dr. Hunt took me to a computer and showed me my MRI scans. They were terrifying. The tumor appeared starkly at the center of the image, a bright virulent mass glowing amidst of the placid grey of surrounding brain matter. It seemed enormous.

Using the scans as a visual aid, he explained the procedure by which the tumor would be removed: where the incision in my skull would be (behind my right ear), its size, the titanium plate he would use to cover the hole in my skull, the approach to the tumor, the delicate and imperfect process of separating tumor matter from the sensitive nerves in that area: the auditory nerve, the balance nerve, and most terrifyingly, the facial nerve, responsible for all movement of the right side of my face.

Dr. Hunt noted the risks of damage to this crucial nerve, explaining that some patients experience facial weakness after surgery but generally recover in weeks or in some cases a few months. I cannot recall what, if anything, he said about the risk of permanent facial paralysis. Because the balance nerve on the tumor side is clipped in surgery, patients feel intense vertigo immediately after the procedure and lingering symptoms of imbalance for some time afterward as the body’s other balance mechanisms compensate. He discussed some of the other potential complications as well – infection, spinal fluid leak, complications with anaesthesia – describing these generally as low probability events.

Overall, he did his best to be encouraging, portraying the surgery as serious but also fairly routine and the recovery as reasonably quick and assured, with patients generally recovered in a matter of several months.

The meeting lasted about an hour. Of that time, Dr. Hunt spent perhaps five minutes discussing (and dismissing) the principle alternative mode of treating Acoustic Neuromas: radiotherapy. When I asked if there was any possibility at all of preserving my hearing, Dr. Hunt explained why radiotherapy – which did offer the possibility of hearing preservation – was not an option for me. The tumor was already quite large, he said, and it sat adjacent to my brain stem and other sensitive nerves. It would be too risky to radiate amidst these critical structures. Plus I was young, meaning the harmful effects of radiation would have plenty of time to manifest themselves. Surgery was the way to go.

As the visit wound down, Dr. Hunt assured me that I had time, months even, to research my options. He told me that on Monday, I would meet with him and his boss, the head of neurosurgery at Cedars, to further discuss my treatment, and that I should relax and talk to other doctors and get comfortable before making any decisions.

This crucial piece of information – that I had time to do my research, that this was not a critical emergency – was hugely helpful and by itself made the trip to the ER worthwhile.

Reaching Out (top)

I left the emergency room in a state of out-of-body numbness, still not quite believing it was me living through these events. In one of those kind blessings that life will sometimes throw our way, I had been invited by a friend to Buddhist meeting that same evening. Unprepared to face my empty apartment, I went and was introduced to an extraordinary spiritual philosophy and practice that helped sustain me through months of anxiety and emotional upheaval.

In the days that followed, the stress of the diagnosis was tremendous. Sleep came fitfully, if at all. My mind was flooded with worse-case scenarios, harrowing images of a life marked by discomfort, pain, disability. I scoured the Internet with grim obsessiveness, reading everything I could find about Acoustic Neuromas and the various modes of treatment. Passions of mine like salsa dancing became vestiges of a distant and carefree past. I began mourning the loss of my youth.

For many weeks after diagnosis, all I could think or talk about was my AN. I began sharing the news of my diagnosis to family and friends and reporting to them what was I learning – basics about my condition, updates on research, the latest reports from my consultations. Their concern for my well-being filled me with a deep sense of gratitude, and I, in turn, was filled with the desire to love and care for them in return. It was a love that fueled me to press forward with hope and determination.

Together with family and friends, I began to process not only the intense emotions of diagnosis but also the complex and confusing information I was beginning to gather about treatment alternatives. Through a colleague and friend at work, I was put in touch with a highly-regarded neurosurgeon at Barrow Institute in Phoenix, Arizona, who became a guide and a touchstone as I inched my way towards a treatment decision. That physician pointed me to the House Ear Clinic, just a few miles from my apartment and the preeminent center in the world for the surgical removal of ANs, where I received one of several consultations that helped me evaluate my options. Another friend put me in touch with a woman who had been treated by Dr. Christopher Duma, who later became the first doctor to advise that I treat my tumor with radiotherapy.

I began to reach out to medical professionals via the Internet. I very quickly found the website of the Cyberknife Patient Forum, which is monitored by experienced physicians who advise and counsel (on a voluntary basis) patients that post questions about their condition. The day after my diagnosis – after learning from Dr. Hunt that I would have to undergo brain surgery and lose hearing in my right ear – I posted my first message on the Cyberknife board, asking for advice on my alternatives. Incredibly, I received a response from a neurosurgeon within hours assuring me that brain surgery was likely unnecessary and that I should have my MRI images evaluated by a radiosurgeon. Later, I would continue to post updates on the Cyberknife board and ask new rounds of questions to help winnow my choices. I plowed through old messages on the board, seeking as much information as possible about radiosurgery and Cyberknife.

Through the Cyberknife website, I learned about Dr. Steven Chang at Stanford, a neurosurgeon who has been treating ANs with Cyberknife since 1999. The same day, I emailed Dr. Chang, attaching my MRI report, and asking whether I could phone him to discuss my condition. A few hours later, Dr. Chang called me at work, provided an overview of the Cyberknife procedure and spent a good bit of time answering my questions. During the next several weeks, I emailed and phoned Dr. Chang several times with questions about my symptoms and my concerns about Cyberknife. He proved unfailingly responsive.

Fundamental Decisions: Surgery, Gamma Knife, Cyberknife (top)

Through these conversations and the other resources available on the internet, I began to get a grasp of the overall treatment landscape, which for me would involve two key decisions:

Surgery v. Radiation. This was the big question. The medical consensus seems to hold that tumors larger than around 3 cm must be surgically removed (though I understand that tumors somewhat larger than 3 cm can, in some cases, also be radiated), either in whole or in part. My tumor was just below the threshold, so radiotherapy was an option for me. Patients with small tumors are sometimes advised to “wait and watch” since some percentage of ANs simply never grow. Given the size of my tumor, however, it had to be treated, and the choices were either surgery or radiation.

The risk/benefit calculation between the options was fairly straightforward. In surgery, you have very high tumor control rates, quoted at anywhere from 95 – 99+% depending on the size and location of the tumor and the skill of the surgeon. Because the tumor is physically removed, certain symptoms like my facial numbness were more likely to go away, though this was by no means assured. And there is no administration of toxic radiation to your body.

On the down side, surgery presented the extremely high risk of hearing loss (anywhere from 80% to 95% or more for a tumor of my size, though the risk can be significantly less with a smaller tumor), a meaningful risk of facial nerve damage (anywhere from 5% to 20% depending on who I asked), and other risks associated with surgery, such as infection, swelling, anesthesia risks, and spinal fluid leakage.

There were quality of life risks as well. Postings on the Acoustic Neuroma Association Patient Forum suggested that surgery patients can experience ongoing post-treatment symptoms such as intense headaches and balance problems. These unknown quality of life issues, combined with the frankly terrifying prospect of potential facial nerve damage, contributed significantly to my anxiety about surgery.

On the radiation side of the equation, Gamma Knife (the prevailing technology) and Cyberknife (a newer technology) both achieve tumor control rates equivalent to surgery, in the range of 95 to 99+%, depending on who you ask. The risk of hearing loss is significantly lower. With Gamma Knife, anywhere from 40 to 60% of patients with useful hearing at the time of treatment actually retain it after treatment; the number jumps to around 70+% with Cyberknife. The risk of any facial nerve damage is extremely low, generally less than 1%.

From a quality of life perspective, radiotherapy seemed to pose fewer risks. Doctors seemed to suggest that patients more or less resume their former lives right after treatment, with some minor post-treatment symptoms such as fatigue and balance issues. On the other hand, because radiation does not remove the tumor, symptoms experienced before the procedure are likely to remain afterwards, though there is a meaningful possibility (I was told on the order of 30%) of improvement.

Originally, I was led to believe that in the very unlikely event the radiation fails, a surgical resection would be more difficult due to scar tissue and thus more likely to result in nerve damage. Later, I was told that a surgery also leaves scarring that would render a second surgical resection more complicated, so this factor ultimately did not counsel in favor of either treatment mode.

Gamma Knife v. Cyberknife. If I elected radiation, I would have to choose among two competing technologies: Gamma Knife, which has been the gold standard of AN treatment since the 1980s, and Cyberknife, which was introduced in the late 1990s or so. There are other radiation technologies out there, but these were the two that were on the table in my case.

There are two key differences between the technologies. First, Gamma Knife delivers radiation in a single dose while Cyberknife “fractionates” the delivery over a series of treatments, usually 3 or 5. Second, Gamma Knife requires the application of a head frame drilled into a patient’s skull to ensure accuracy, while Cyberknife relies on a non-invasive, robotic technology to do so. The head frame, though clearly unpleasant, leaves no lasting scars and in and of itself, I think, would not determine my decision. The key questions in my mind were: Is there any difference in the accuracy of the technologies? And is there any difference in the medical efficacy of single-dose v. fractionated radiation?

Simple enough. Or so I thought.

Additional Consultations (top)

On Sunday night (three days after diagnosis), my father arrived in LA from New York. By this time, I had regained a bit of my center. More than anything it was the prospect of brain surgery – the partial deafness, possible facial palsy or paralysis, ongoing headaches and vertigo – that filled me with dread. But my research had provided some tentative hope that I could treat the tumor with radiation instead of surgery, retain my hearing, avoiding the risk of facial nerve damage and the potential complications associated with a craniotomy. At least two doctors – Dr. Chang and Dr. Medbury from the Cyberknife board – had told me radiotherapy was certainly an option in my case.

And so when the time came for my second consultation with Dr. Hunt and Dr. Keith Black, I was guardedly optimistic. I understood that Dr. Hunt was trained as a surgeon, but armed with considerably deeper knowledge of my options, I hoped that Dr. Hunt would reassure me that radiation was at least a reasonable decision in my circumstances. I was mistaken.

Dr. Hunt entered the examining room, and once again, he insisted that surgery was necessary in my case, shattering my hopes. I pressed him further for his reasoning and here were his principal rationales:

  • My Age. I am 34 years old, meaning I will likely be around for 35+ more years, meaning there will be lots of time for the effects of radiation to emerge later in life.

  • Tumor Location. Because my tumor was adjacent to the brainstem, radiation could result in serious complications, such as difficulty swallowing.

  • Tumor Size. Measuring about 2.9 cm x 2.3 x. 2.5 or so, my tumor was too large to treat efficaciously with radiation.

Dr. Black joined the consultation. The head of neurosurgery at Cedars Sinai and a world-renowned neurosurgeon, Dr. Black is an imposing presence, a man clearly accustomed to being the authority in the room. He joined us briefly, essentially reiterating Dr. Hunt’s pronouncements with one important exception: he put the risk of losing right-side hearing in surgery at just 30% and the risk of facial nerve damage at just 5%. These odds were far more optimistic not only to what Dr. Hunt had told me but also to what I’d read and heard from everyone thus far, all of whom had put the risk of hearing loss at 80% at the very least and more likely closer to 90 or 95%.

Dr. Black did acknowledge late in the session that I could be treated with radiation if I elected to do so. The technologies available through Cedars Sinai at the time were Gamma Knife or, if I preferred fractionated radiotherapy, X-Knife (an older generation machine). His recommendation, however, was clear: the tumor should be surgically removed.

I left the office anxious and angry at the cards I had been dealt. More than anything else, though, I was afraid. Afraid of brain surgery. Afraid of losing hearing. Afraid of facial nerve damage. Afraid of my life changing forever.

Outside the medical center, I sat on a ledge and for the first time since my diagnosis, I collapsed into helpless tears. The tension was just overwhelming.

My father reminded me that I had been expecting the Cedars’ doctors to advocate surgery, which was true. I understood that Dr. Hunt and Dr. Black were trained as neurosurgeons and thus had a pro-surgery bias. But it was still terrible to hear their decisive pronouncement.

It was the first time I’d witnessed first-hand how a doctor’s particular training and perspective will determine the advice they give and the treatment they prescribe. If I had limited my consultations to Cedars, I would have learned virtually nothing of the most significant advance in the treatment of Acoustic Neuromas in the past 20 years: radiotherapy.

Until I was diagnosed with this condition, all doctors seemed more or less the same: some might have better bedside manners, but for the most part they could diagnose my condition and prescribe the right medication. I was now confronted with something altogether new: an area of specialized medicine marked by significant debate and disagreement, where doctors have their own theories, opinions and biases. To this day, I think all of the time about patients who do not receive all of the facts about the options available to them, or who are given only a distorted or incomplete picture, or who otherwise do not have the resources or wherewithal to research their alternatives. The inequities inherent in this system humble me, and at the same time make me angry and indignant. That is the main reason I created this website.

It took me a couple of days after my Cedars consultation to regroup and continue my research. One of the first things I did was post a brief account of the consultation on the Cyberknife message board, including the reasons I had been given for surgery. Once again, I received a quick response from a neurosurgeon calling Cedars’ conclusions into question and insisting that their rationales for surgery didn’t hold water. My young age should not be a factor because there was no basis to conclude that GK or CK posed meaningful long-term risks. The position of the tumor adjacent to the brainstem shouldn’t matter so long as the procedure is done competently. And tumors larger than mine had been treated successfully with radiation. He also called into question the odds of hearing loss and facial nerve damage quoted to me by Dr. Black (as did virtually everyone with whom I spoke). This did not surprise me. In fact, the odds given to me by Dr. Black troubled me to such an extent that I genuinely questioned his motives in providing them. Was he trying to provide hope and encouragement? Was he extremely confident in his own abilities? Were they based on his personal surgery results? Did he want to tilt the scales in favor of surgery? I was perplexed and frankly, skeptical.

I began scheduling additional consultations to get a range of opinions. Though I dreaded the prospect of surgery, I wanted an objective assessment of whether it was necessary, so I sought out doctors experienced in both surgery and radiotherapy. I made an appointment to see Dr. Christopher Duma, a prominent Orange Country neurosurgeon with a busy surgery and radiotherapy practice, and one with Dr. William Slattery, a neurosurgeon at the House Ear Clinic, the preeminent center for Acoustic Neuroma surgeries in the country. I also wanted to hear more about Cyberknife, the procedure that seemed to hold out the best hope of preserving my hearing, so I scheduled a third appointment with Dr. Steven Chang at Stanford. I scheduled the appointment with Dr. Duma on Friday (a week and a day after diagnosis), Dr. Slattery on the following Monday, and Dr. Chang the next day, on Tuesday. My plan was to complete these three consultations and make a final treatment decision.

On Tuesday, I had my first audiogram, which revealed that I had moderate hearing loss in the high frequencies in my tumor-side ear, with perfect word recognition. For years, I had been asking people to repeat themselves, wondering why they were not speaking more loudly or more clearly. Now I had an answer. Still, the results were good news: my hearing was still exceptionally good considering the size of my tumor.

On Thursday morning, the day before the first of these additional consults, I began experiencing unsteadiness and balance problems for the first time. This was a genuinely disturbing sensation, a feeling akin to nausea that made me withdrawn and tired and concerned that my quality of life would be permanently marred. Worse, I feared that the onset of this balance symptom meant I would have to have surgery, increasing my tension and anxiety. Sensing my growing despair, my dad motivated us to spend the afternoon relaxing at the beach. The surf calmed me, and by afternoon, the dizziness passed. I put a call in to Dr. Hunt, who suggested the symptoms probably were a product of anxiety since it was unlikely that there had been any tumor growth in the few days since diagnosis. I hoped he was right.

Consultation #3: Dr. Christopher Duma (Hoag Medical Center)
The next morning, we headed to Dr. Duma’s office in Newport Beach, California. I had emailed Dr. Duma about a week before with a copy of my MRI report and a synopsis of my condition. He responded briefly that Gamma Knife was the way to go and that I should schedule a consultation. I was looking forward to hearing a decisive pro-radiotherapy point of view.

Dr. Duma sat behind a large polished desk, with a huge hi-tech flat screen monitor looming behind him, displaying the stark digital images of my brain. It was apparent from his bearing and manner that he is a man at the top of his game, a self-assured surgeon in command of his craft. Minutes into the consultation, he issued his opinions decisively. In my situation, Gamma Knife was the way to go. Here were his reasonsL I am a young professional in the prime of life. Given the size of my tumor, surgery presented a meaningful risk of facial nerve damage – a serious complication best avoided if possible. GK achieved tumor control rates comparable to surgery – Dr. Duma’s personal rate was about 98%, without the risk of facial nerve damage and with substantially improved odds of hearing retention. About 60% of Dr. Duma’s patients with useful hearing retain it after the procedure. He scoffed at the statistics provided by Dr. Black and said I would almost certainly lose my hearing in surgery. With respect to post-procedure symptoms, he noted that my pre-treatment symptoms would likely remain since the tumor remains in place but indicated there was some possibility – on the order of 20 to 30% – of improvement. About half of tumors shrink with time after treatment though, bizarrely, the shrinkage does not necessarily result in an improvement in symptoms.

He reviewed the logistics of the Gamma Knife procedure. It is completed over the course of a single day, beginning with application of a head frame to the skull, followed by MRI or CT imaging, radiation planning and finally, the administration of about two hours of radiation. I would be put under a mild anesthesia while the head frame was drilled into my skull. The wounds from the frame would heal in a few days and leave no permanent scarring. After 10 or 12 hours or so, I would walk out of the hospital, ready to return to life the next day.

I was enormously relieved. And at the same time I was angry. Why, I asked indignantly, would any doctor advise surgery in my case when radiosurgery seemed such a clearly superior option? Surprisingly, Dr. Duma told me that due to the size of my tumor, this was not a “slam dunk” in favor of radiotherapy. He said it was more like 60-40 call in favor of GK (doctors love trafficking in percentages).

I asked Dr. Duma about Cyberknife and he quite frankly dismissed it. Dr. Duma is trained in both CyberKnife and Gamma Knife but he does not use Cyberknife for Acoustic Neuromas. He gave two reasons for this.

First, he felt strongly that there was insufficient data supporting the use of fractionated radiotherapy, i.e., radiation delivered in multiple doses, for Acoustic Neuromas. Gamma Knife, which is a single dose treatment, has a track record going back to the 1980s. Its success is documented and there has been observation of treated patients 20 years after the fact. Cyberknife’s track record, on the other hand, is just a few years old, making it impossible to know whether it will achieve comparable tumor control rates in the long term.

Second, Dr. Duma was convinced that due to the head frame, Gamma Knife is a more accurate machine in terms of the precision with which the radiation beam hits its target. My overall impression was that he believed Stanford’s advocacy of Cyberknife for the treatment of Acoustic Neuromas is quixotic and outside the mainstream of medical opinion.

It was a good consultation. Though I was disappointed by Dr. Duma’s assessment of Cyberknife, it was comforting to receive a serious and confident opinion in favor of Gamma Knife – a day-long outpatient procedure that would have me resuming life in a matter of days. My strong feeling was that I wanted to get through this ordeal without surgery and, if possible, with my hearing intact. That now seemed possible.

My father and I drove straight from Dr. Duma’s office to Laguna Beach, where we spent the weekend swimming and taking in the sun. For long moments, I almost forgot about my tumor and was able to relax and smile. My symptoms receded and it seemed possible, even likely, that things would return to normal in time. On Sunday evening, back in Los Angeles, I took my dad to a local casino to pass the time. After a couple of hours at a three-card poker table, my dad hit the proverbial jackpot: a royal straight flush with odds at 200 to 1.

Consultation #4: Dr. William Slattery (House Ear Clinic)
Monday came and I checked in to my appointment with Dr. William Slattery of the House Ear Clinic. House conducts more AN surgeries than any medical facility in the world, and if had elected surgery, it’s likely the place I’d have it done.

Dr. Slattery has a commanding knowledge of Acoustic Neuromas and he started the consultation by providing an overview of the biology of the tumor, its location and growth patterns, and its relation to nearby nerves. Using my MRI images, he explained his theory as to why my right-side hearing was still virtually intact despite the considerable size of my tumor. (Something having to do with the walls of the ear canal protecting the auditory nerve.)

With respect to treatment, Dr. Slattery did not have a decisive view in favor of either surgery or radiation. Each had its benefits in my case, and each its risks and downsides. Surgery offered the prospect of a total removal of the tumor but presented the meaningful risk of facial nerve damage (which he estimated at around 5-10%, if I recall correctly) and the near certainty of complete right-side hearing loss. Radiotherapy essentially eliminated the risk of facial nerve damage and offered a substantial possibility of right-side hearing preservation, but posed the risk that a future (and more complicated) surgical resection would be required in the event of failure. (Advocates of radiation strongly believe this risk exists whether you elect surgery or radiotherapy. Physicians on the Cyberknife message board will tell you point-blank that any doctor that says radiotherapy may cause cancer down the road should be dismissed outright.)

Dr. Slattery also is trained in Gamma Knife. I asked him about Cyberknife, hoping for an endorsement, but to my dismay, he essentially concurred with Dr. Duma. The decisive factor, he said, was Gamma Knife’s superior overall accuracy.

I left the consultation heartened that another doctor had green-lighted radiation as a viable treatment choice. But I was disappointed that Dr. Slattery did not endorse Cyberknife. The prospect of a 70+% hearing preservation rate was extremely appealing. But either GK or CK meant that I’d get through this without a hole in my skull or a stay in the intensive care unit, and that meant a lot.

Consultation #5: Dr. Steven Chang (Stanford University)
The next morning, I flew to Oakland to meet my buddy Jordan, who had agreed to accompany me to Stanford for my consultation with Dr. Chang. Apart from being my best friend, Jordan is one of the smartest people I know. Trained as a criminal defense attorney, I asked Jordan to bring the full weight of his considerable cross-examination skills to bear on Dr. Chang. I wanted to believe in Cyberknife. I wanted to be convinced. But if Jordan could be convinced as well, then I would know Cyberknife was a reasonable way to go. And given all of the conflicting opinions out there, reasonable was probably the best I could hope for.

We were shown in to an examination room and after some time, Dr. Chang appeared. In contrast to Dr. Duma’s charismatic swagger, Dr. Chang gives the impression of a socially-awkward scientist. He was not good with eye contact, which made him seem somewhat disengaged.

Bedside manners aside, though, my agenda for the consultation was clear: I needed Dr. Chang to address the doubts about Cyberknife that had been voiced by other physicians – in particular, whether long term tumor control rates would match those achieved with Gamma Knife and whether CyberKnife really was less accurate then Gamma Knife.

With respect to tumor control rates, Dr. Chang said there was no clinical or scientific basis to indicate that CK control rates will be any different from GK. Much of the data compiled since the 1980s relates to radiation in general without reference to a particular technology, and there is no data supporting the notion that fractionating treatment over three or five doses will result in different outcomes. I believe Dr. Chang referenced some data relating to a regiment of patients in Europe who were treated with an extended course of 30 or more fractionated treatments. These patients had tumor control rates in the 92% range. But CyberKnife uses three or five doses only – not 30+. Moreover, Stanford has been using fractionated radiotherapy to treat ANs since the early 1990s using an earlier generation LINAC machine, and the tumor control rates among those patients has been on the order of 98%. Cyberknife, a next generation technology introduced at Stanford in 1999, has achieved control rates of greater than 99+%. Since failure generally becomes evident within three or four years of treatment, enough time had passed since the introduction of Cyberknife at Stanford such that it would be apparent by now if control rates were lower than those achieved with Gamma Knife.

I moved on to the subject of accuracy. Dr. Chang stated point blank that Cyberknife is the most accurate technology available based on published medical research, albeit research conducted at Stanford. Though Gamma Knife has a theoretical accuracy rate higher than Cyberknife, a variety of other factors introduced during treatment – head frame placement, imaging inaccuracy, human error – result in effective accuracy rates that are slightly lower than Cyberknife. In any event, both machines are extremely accurate, with differences on the order of less than a millimeter. Given the size of my tumor, such discrepancies were unlikely to materially impact my treatment.

Other factors gave me additional comfort. The risk of damage to the facial nerve was tiny – less than 1% – and more than 70% percent of patients with serviceable hearing retain it after treatment, with quality of hearing at the time of treatment being the best predictor of future outcomes (good news for me).

With respect to other symptoms caused by the tumor, in most cases, pre-treatment symptoms generally remain the same after treatment. About 20-30% of patients see some improvement, and 5-10% see a worsening of symptoms. There was no way of knowing what would happen in my case. The facial numbness that had heralded my tumor’s arrival would likely remain, as would the bouts of dizziness and the more vague and generalized pressure and strangeness that I felt in my head.

One of tough things about radiotherapy is coming to terms with the fact that the tumor will remain lodged in your head for the course of your natural life. With both CK and GK, something like 50 percent or so of treated tumors actually shrink in response to treatment (sometimes to half their original size); the other 50 percent die without shrinking. In 20 percent or so of cases, the tumor swells in response to treatment and either will shrink to its original size or die in this newly enlarged state. They do not know why some tumors shrink or swell and others do not, and surprisingly, there is no correlation between tumor shrinkage and improvement in symptoms, though the post-treatment swelling may exacerbate symptoms. Yet strangely, removal of the tumor through surgery also does not result in the elimination of symptoms. The reality, it seemed, was that the area in which this tumor is lodged is so sensitive that it was extremely difficult to say with certainty what impact the tumor and its treatment would have.

So that was it. My final consultations were now over. I had spoken with some of the most highly-regarded doctors in the field, representing the three major approaches to treatment. There were no more experts to consult. It was time to make a decision.

The Moment of Truth (top)

I flew back to Los Angeles that evening intending to give myself a day or two to process what I’d learned. From the beginning, I had been leaning towards Cyberknife – the simplicity and ease of the outpatient procedure, the tumor control success rates, the possibility of hearing preservation, held tremendous allure. But Dr. Duma and Dr. Slattery had offered strong opinions against it, and I wondered if I was clinging too desperately to my right-side hearing, taking a reckless risk for the sake of a 15-20% better chance at retaining it.

Another factor lurked in my mind as well. A month before my diagnosis, I had let my firm’s open enrollment period lapse without switching out of my HMO, despite strange premonitions that I should do so. That lapse had plagued me from the moment I was diagnosed. At 34 years old, I figured anything I was likely to come down with could be treated just fine in an HMO – particularly since mine was affiliated with Cedars Sinai, a world-renowned hospital. What I didn’t bank on was a diagnosis where “fine” doesn’t cut it. I had a brain tumor, and I wanted it treated by the best – not just the best alternative available in my “network.”

Yet it had become clear that my insurance company had no intention of covering a Cyberknife treatment at Stanford. They had already denied the claim for my initial consult with Dr. Chang on the ground that other neurosurgeons at Cedars could provide a second opinion. What did Aetna care that as Dr. Black’s underlings, they would likely parrot his recommendations? Moreover, Cedars Sinai had purchased a Gamma Knife unit about six month before, making an comparable – and much cheaper – treatment alternative available in network. I was skeptical that Aetna would care much that Cedars had only just started using the machine, or that Cyberknife had superior hearing preservation rates.

All of this meant that I was looking at shelling out about $70,000 for treatment at Stanford, even though I was a fully-insured professional. It was madness. My only hope was persuading Aetna that Cyberknife was “medically necessary” in my case. Expecting the worst, I asked the schedulers at Stanford to begin the claims process. I was told that it would take a week to ten days for my claim to work its way through the various stages of appeal.

In the meantime, I had a conversation that called into question all of the hopes I’d been placing in Cyberknife.

A Final Crisis (top)

Soon after my diagnosis, I colleague at work put me in touch with his brother, a neurosurgeon at the Barrow Neurological Institute in Phoenix, Arizona. I had been periodically touching base with this doctor throughout this process, and he was kind enough to respond to my questions, give feedback and advice, and offer encouragement. He had no stake in my treatment except wanting to see me get well, and I felt fortunate to have him in my corner, offering neutral counsel.

In our very first conversation, he told me that Gamma Knife was likely my best option. He steered me away from Cedars Sinai on the grounds that they hadn’t treated enough ANs, told me about the House Ear Clinic and provided reassurance as to the abilities of Dr. Duma and Dr. Slattery. At each step of the way, he was a reliable sounding board, assuring me that I was on the right track.

After returning from Stanford, I emailed him one last time to let him know that I had decided on radiotherapy but was still choosing between Gamma Knife and Cyber Knife. A couple of days later, he called me at work with a note of concern in his voice.

He then told me in no uncertain terms that Cyberknife would be a mistake. Gamma Knife is a more accurate machine, he explained, and it has an established track record spanning more than two decades. Cyberknife was new and unknown and less accurate and there was no reason to take the risk. I cited the hearing statistics, but he was undeterred. Hearing preservation is important, he said, but regardless of my treatment, I would most likely lose my tumor-side hearing five years out. Moreover, this was not just his opinion. He had just been to a conference of neurosurgeons and had polled a dinner table populated with 8 neurosurgeons on my behalf. Every single one of them said they would go with Gamma Knife in my position. His message was clear: in light of what we already know about Gamma Knife, I would be nuts to subject myself to the unknowns of Cyberknife.

I thanked the doctor and hung up, feeling that I had been throttled back to square one. I knew that CyberKnife was somewhat of a cutting edge treatment, but until that moment, I had no real appreciation that as a new technology, it truly was not within the mainstream of medical thinking. Worse, my faith in Dr. Chang was momentarily shaken. Was he just another biased doctor, a propagandist for an untested technology invented by his mentor at Stanford?

I emailed the physicians from the Cyberknife message board to get their take on what I’d just heard. Sure enough, they repeated what I'd already been told about the arguments in favor of Cyberknife: taking into account all treatment factors, the machine is more accurate overall; Gamma Knife is a great option too, with basically the same success rate, but CK offered better accuracy and better hearing preservation rates, without the trouble of the head frame.

I sent a separate email to Dr. Jerome Spunberg, a Harvard-trained physician who volunteers on the CK message board, to get additional comfort on accuracy. With a day or two, he responded by email and confirmed that accuracy should not be a concern.

I was reassured but wary. The goal of pre-treatment research is to make the best decision in light of the available information. I needed to feel enough confidence in my choice that, come what may, I would never regret my treatment decision, even in the face of things gone terribly awry. I wanted the reassurance that I had done everything in my power to make the best choice, that given the information available at the time, I would make exact same choice again.

Yet reaching that point seemed impossible. I had respected physicians advocating two mutually-exclusive options. I had visions of myself struggling with post-Cyberknife complications, thinking back with shame and regret at all the warnings I had received and ignored. At the same time, I imagined going deaf in my right ear after Gamma Knife, wondering what might have been if I’d taken the chance on Cyberknife.

More consultations wouldn’t help; they would just confirm the radical split in opinions. I could not rely on doctors to break the stalemate. I would personally have to overrule one group of doctors and entrust myself to another. No one would do it for me.

And so I broke down the problem. By this point, I was comfortable that the debate over the relative accuracy of CK and GK should not sway the decision. The two camps were debating over fractions of a millimeter, and enough doctors had convinced me the difference would not impact my treatment.

The big question was tumor control rates. Gamma Knife had a positive record spanning nearly thirty years, with tumor control rates consistency measured in the mid to high 90s. Dr. Duma’s control rate was fully 98%. Introduced in the late 90s, Cyberknife was the new kid on the block, and while initial results were encouraging (with control rates equivalent to GK's), there was no data available on the longer term consequences.

I could scarcely imagine undergoing a radiation treatment only to have the tumor continue grow unimpeded. Apart from the psychological devastation, the potential physical consequences were frightening. In my case, the enlarged tumor probably would have to be surgically removal in a procedure rendered more complex and risky by scar tissue.

I was haunted by Dr. Duma’s admonitions. In his view, prior experiences with fractionation in Europe and at Johns Hopkins and Staten Island University had resulted in tumor control rates in the low 90s, suggesting to him that the biochemistry of Acoustics did not respond well to fractionated treatment. Low 90s were not bad odds, but as someone diagnosed with an AN – which strikes just 1 in a 100,000 – I was reluctant to bank on the numbers going my way. I had confronted Dr. Chang about these experiments and was reassured by his explanation that these episodes generally involved fractionating the dose over something like 30 separate treatments, as compared to the three or five sittings typical of a Cyberknife regimen. Further, Stanford had introduced fractionated radiotherapy with an older generation LINAC machine in the early 90s, meaning they already had compiled a nearly 15-year track record. Tumor control rates among patients up to 15 years out was in the realm of 98% – plainly comparable to Gamma Knife.

Even still, enough doctors had directed me to Gamma Knife (and away from Cyberknife) to give me serious pause. I needed additional comfort and to get it, I decided I needed to examine the medical literature myself. So I spent one manic afternoon reading the available medical abstracts on I typed “Gamma Knife" & "Acoustic Neuroma” (and variations such as "Cyberknife" & "Acoustic Neuroma" and "Acoustic Neuroma" and "Quality of life") into the search box and worked my way through results. To say this was excessive and neurotic on my part would be an understatement. But it was my process.

Many, many hours later, bleary-eyed and exhausted, I had reached two conclusions: first, the abstracts reinforced my decision to eschew surgery. Quality of life studies (see here and here and here, for example) suggested that surgery had a greater negative impact quality of life than radiation. Thirty-four years old, unmarried, without kids, my paramount concern was getting back to my irresponsible life in as whole and normal a state as possible.

Second, and more important, I could discern no meaningful difference in the tumor control rates achieved by Gamma Knife versus the other forms of fractionated radiotherapy that had been the subject of many studies in past decades. These studies (there are too many to link to) generally showed tumor control rates in the same range as GK (in the mid-90 precentage range). Taking into account statistical margins of error, the control rates were essentially identical. And with identical control rates, the decision between Gamma and Cyber was much easier. My right-side hearing was quite good, and it was beyond dispute that Cyberknife was more likely to preserve it.

I called Stanford one last time to run my conclusions by Dr. Chang. He returned the call a few hours later and we spent some time discussing accuracy and tumor control issues. He cited for me the peer-reviewed study concluding that Cyberknife is more accurate in treatment than Gamma Knife. He reiterated that the available literature on radiotherapy applied to both Gamma and Cyberknife. And he pointed out that insofar as Stanford has been using Cyberknife on Acoustics since 1999, they would already know if tumor control rates were lower than those achieved by Gamma Knife, since failures would be noted in patients treated three or more years ago. In fact, Stanford’s control rate was on the order of 99%.

The following morning I sent an email to Dr. Chang and the Stanford scheduler announcing my decision to proceed with Cyberknife. It took another two weeks to deal with insurance issues, including a recalcitrant HMO that refused to authorize the procedure until compelled to do so by the State of California. Finally, on August 20, insurance hurdles cleared, internally resolved, I arrived in Palo Alto with my mom, dad and sister for treatment.

Treatment (top)

As a Los Angeles resident, I’m accustomed to the lovely climate of California, but even I was taken aback by the glory of August in Palo Alto. Achingly beautiful, the mild summer days inspired in me praise and thanks for the manifold gifts of our world, in spite of the painful circumstances of my visit.

We reported to Stanford on Monday afternoon for an initial consultation with Dr. Soltys, a radiation oncologist who would provide an overview of the treatment. I cross-examined him with the same obsessiveness as the others – by this point it was habit – only this time I was rehashing familiar ground, getting final validation of my decision.

The following morning I spent about an hour having a CT scan done and a mesh restraining mask molded to my face. I would be wearing the mask during the radiation sessions to keep my head in place.

On Wednesday, August 22, I had my first radiation session. For fifty minutes or so, I lay down on a cushioned surface with the restraining mask pressed against my face, more or less pinning my head in place. Feeling like an entombed mummy, I withdrew to as deep a state of catatonia as I could muster, imaging myself to be asleep or unconscious so as to keep as still as possible. And in the meantime, the machine which I had read and heard so much about, the Cyberknife, hovered overhead, buzzing and clicking, firing radioactive beams into my skull.

In moments, surges of claustrophobic anxiety would rise within me, and I would be seized with a desire to rip the mask from my face. But I managed to best those feelings before they posed a problem. Otherwise, the procedure was as painless and anticlimactic as one could imagine. My last visit to the dentist’s office was a thousand times worse by comparison.

When the session ended and I bounded into the waiting room smiling and enthusiastic, my parents nearly collapsed in relief. Throughout this experience, they had mustered every last bit of internal resolve to be optimistic and encouraging, but it was not until that moment, when I emerged from my first treatment seemingly unscathed, that I saw the weight of their anxiety finally begin to lift. Their son was going to be okay.

In the downtime between my three CK sessions, my family and I enjoyed a vacation of sorts. We spent mornings poolside at the hotel, swimming, reading and sunbathing. I hit the gym and swam laps, hoping the increased circulation would help heal my fragile nerves and purge my body of toxins. We spent an afternoon strolling through the charming streets and alleys of Carmel and admired a majestic sunset on the rocky coast along the 17 Mile Drive. We spent another day exploring the neighborhoods and piers of San Francisco and eating phenomenal Chinese food at the House of Nanking in Chinatown. It was the first time the four of us had been alone like this in years, and I have to say, it was delightful, an almost dream-like interlude made all the more poignant by the circumstances of our stay.

On Friday morning, after the last of my three radiation sessions, we packed our belonging, piled in the car, and headed south on Highway 101, on the road back to Los Angeles and to the beginning of my life after Cyberknife.