Prelude 

After a few years of minor speech discrimination problems in loud rooms, I was finally moved to action when I realized I couldn't hear the alarm on my pager if I was sleeping on my right side, revealing a palpable high tone loss in my left ear. I will be forever grateful to my ENT (Ear, Nose & Throat Doctor) David Alessi at Cedar-Sinai Medical in Los Angeles for ordering an MRI after my audiology (hearing test) report indicated a lower threshold of hearing in just one ear (90% speech recognition in the bad ear). I had written it off to my college years working on rock & roll concerts, and since then, on my job in as a gaffer (lighting director) on movie sets near special effects explosions. The loss really isn't that noticeable, I had just thought it a good idea to monitor it. 

I scheduled an MRI in Beverly Hills in the morning toward the end of the week, knowing we always end up starting the workday late for night shots as the weekend approaches. I dressed into a hospital gown and my head was positioned in a soft open collar to minimize movement. The table I was laying on is then moved by the machine back under a polished plastic tunnel, more like a ring, maybe a foot or half foot away from my face. I actually enjoyed the MRI. It didn't sound like a jackhammer; maybe more like visiting the matter/antimatter engine room on the star ship Enterprise. A series of varying patterns of mechanical sweeps. I fell asleep for half the procedure, and I know there was an injection of gadolinium but I now don't recall the actual shot. 

Dr Alessi's office called me that afternoon, to schedule a follow up. He had warned me earlier, when he prescribed the MRI, that the hearing loss in just one ear could be an indication of a rare type of tumor in the inner ear. Though he later said such prompt calls are standard procedure, I was suspicious of the quick response from his office. 

15 Nov 2002

At my follow up appointment, Dr Alessi called me to his side to show me my MRI films. The MRI takes a series of images as if looking at the brain in wafers. Just below the level of my eyes, toward the center, where the brain narrows into the stem, on the left side is a white circular blotch, confirming I had a tumor. He explained it was small, benign, located in the canal of nerves between the brain stem and inner ear. And he told me I was lucky to be living in this day and age. Even five years ago, my options for treatment were much more limited. 

He deferred most of the questions to a neurosurgeon who shares a nearby office and was coming to see me in a few minutes. I went back to the waiting room, not the least bit alarmed, not having fully listened to what was being said, and thinking, "Great, some surgery, but now we know what it is, it can be removed, my hearing will improve." I was called back in to meet the surgeon, Dr Michel Levesque. He explained the three different approaches for surgery, and recommended the Middle Fossa method for me, explaining the window in the skull, nudging aside the brain, etc. and offered what I've since confirmed was a realistic assessment of the outcome. The usual surgical slight risks of death, comma, blood clots, etc. and the particular risks of this procedure, including partial facial paralysis, balance problems and deafness in the affected ear. He also mentioned the options of Radiosurgery, and of Wait-and-See because my tumor is small. 

As I drove home, my initial reaction was purely one of vanity. I despised the thought of facial palsy, of wearing an earring aid, of walking with a cane. I went to a movie with a good friend, and when we got out, I called the doctor's office to write down the name of the condition, so I could do some Internet research at home. When I did get home, I had lost the slip of paper, and it took some jockeying of words in my memory, "Auditory? Aural? Neurosis? Then a word common at work jarred my memory: ACOUSTIC... ACOUSTIC NEUROMA." 

After first misspelling neuroma, I hit the jackpot at Google, as I'm sure all of you have, if you've gotten this far. Tens of thousands of links. The horror stories came pouring out of the computer. Gold weights for the eyes. Terrific spells of spinning rooms and Vertigo. Infections. Spinal fluid leaking out the nostrils. What in Heaven's name have I gotten myself into? 

20 Nov 19, 2002 

Combing through the Internet on the weekend, my constant companion was Sable, my elderly aunt's cat whom I've assumed the care of. Oddly, she is hiding behind the computer and has stopped eating. I took her to the vet Monday morning. Now, after a few such episodes of boomeranging health, we decided it is pointless, perhaps even cruel to nurse her back to health, if that's possible, only to have her inevitably crash again. I spend a quiet hour with her before the vet comes in to put her down. I know this is the compassionate even the moral thing to do, but she is so scared as I bring her to the exam table. While driving north to tell my aunt of what has happened, I was filled with a nihilistic dread. Is it just the pity for the poor cat, and my apprehension at breaking the sad news, or is it also the nagging consciousness of my own vulnerability? 

Doing research, I had discovered the gentleman who perhaps could offer a balanced recommendation of treatment, a physician, Dr Jeff Williams at Johns Hopkins in Baltimore trained in both neurosurgery and radiosurgery. It wasn't long though before I discovered that Dr Williams died last summer, and as much as a shock it was to me at this moment, I cannot imagine what it must have meant to his family, his colleagues and his patients. It is great loss for all us, even those who never had the opportunity to meet him. By all descriptions, he was a wonderful person and the only reliable source I've ever been aware that might offer what we all at one point hunger for: a fair balanced opinion of which course to take. 

I remember something about the number five in the measurement of my tumor, though I don't recall the scale. 5 cm? .5 in? I hold up my fingers and realize both those figures are big, 5 cm is only a little smaller than a golf ball. Most of measurements in the cases I'm reading about are 1.5 cm to 3cm. Larger ones tend to have more devastating symptoms. I call the doctor's office yet again. What an ignorant patient I've been so far. Yes, my tumor is 5 x 8 mm. One of the smallest I've read about.  

Now my course of action is becoming clearer. I'm lucky; I've caught this early. My symptoms are absolutely minimal. Whatever I do, I must take advantage of both of those factors. I travel frequently, and I work freelance. So I can position myself to get treatment at any of the several facilities that now have become apparent to me as the leaders in treatment. Microsurgery at House Ear Clinic here at home in Los Angeles. FSR at Johns Hopkins in Baltimore, where I have a pending movie shoot this coming spring. Or FSR at Staten Island University Hospital in NYC, where I have several friends. Finally Gamma Knife at University of Pittsburgh, close to my family in Ohio. I gone several full rounds so far, deciding conclusively to go for microsurgery, then conclusively wait-and-see, then realizing radiosurgery is the only sane option and back around several times. 

22 Nov 2002 

I'm settled on radiosurgery, when I schedule an appointment with Dr Brackman at House Ear Clinic to give surgery one last chance to argue for itself. I drop flowers off at Dr Alessi's office on the way to my appointment to thank him again for finding my tumor. When I arrive at the House Ear Clinic, I realize what a large and busy institution it is. Dozens of people are in the waiting room, many of them coping with all the complications and conditions I've been reading about the last two weeks. Long ago in my twenties, I left behind my presumption of invinicibility. But now it has hit home that I'm tiptoeing on the cusp of a handicapped life. 

The clinic is in a fairly large modern building across the street from St. Vincent's, the small older hospital where they do their surgeries. It's in a typical near downtown LA neighborhood. Comfortable enough for me, but I think maybe a little intimidating for someone from out of town. I'm shown to one of many small exam rooms, and soon seen by a young doctor who does the preliminary. He performs all the same procedures I have done in the past month, though now I understand their purpose. He gently touches my face with a twisted cotton ball, to test my facial nerve, he rubs his fingers together at different distances from my ears, I stand in place with eyes closed, or walk toe to heal as in a sobriety test. He then gives me a thorough explanation of the nerve structure inside the canal. And I now understand how the tumor in a tight space crowds the other nerves, even if it hasn't yet attached or intertwined with them. 

After another wait as I read all the literature involving ear malfunctions and half of the LA Times, I meet Dr Brackmann. He speaks in a careful and deliberate manner, explaining the procedure and the probability of the complications. I learn for the first time, that the preferred procedure is to sever (medical euphemism: resection) the balance nerve, and allow the remaining side to compensate, rather than permit the damaged side to struggle. I'm very skeptical about this, and Dr Brackmann refers to several previous patients who are pilots and are now back flying. I've come prepared to do battle with him, but I find myself being convinced. He is, as expected, dubious about the prospects of radiation treatment, but he is generous with referrals to such physicians. He gives me a 3" stack of xeroxed articles concerning AN's and their treatment. Half of the stack is arguments against radiosurgery, and the other half is descriptions and results of Middle Fossa surgery. Every paper is a reprint of a medical journal article.

On the way home, I prioritize the list of possible complications. And as I do this, I discover I've already crossed a bridge without realizing I'd even made the first step onto it. It was impossible, unthinkable two weeks ago that I could lose vital senses. Gradually, without willing myself to so, I have gotten my mind around it. My brain tumor has now become a status quo of my existence. A bit to my surprise, I consider the hearing in one ear to be the most expendable sensation, followed by facial nerve, and lastly, I'm least willing to lose my balance. None of this list has addressed the real possibility of scent and taste problems, and chronic headaches, associated with many of the surgeries from patients whose stories I've read. If I am to have surgery I can schedule it for just after New Years. I am leaving for New Orleans in few days to spend Thanksgiving with friends; I can read the literature and absorb more of this. I decide to schedule a consultation at Johns Hopkins, and perhaps Staten Island. 

29 Nov 2002 

Having read all that Dr Brackmann has given me, and read more testimonials on the web, I am now heavily leaning toward having surgery and having it sooner rather than later. I realize that for some my early diagnosis would recommend wait and watch. With either treatment, better hearing going into the procedure supports a better outcome. Of course, if it doesnt work out, I will have been better off to live with what I have now for as long as I could. I will never know the what if. The tumor has taken 10% of my hearing already. I am willing to take the risk to stop it at that. In any case, only the worst of results can be worse than doing nothing. Eventually the tumor WILL take my hearing and facial function and balance. The unknowable factor is how long will it take to do that. 

I've gotten an appointment at Johns Hopkins. I call to do the same at Staten Island University Hospital, but their response is to request I send my MRI's and hearing results and then the board will evaluate my candidacy as a patient. Instead, I log onto their website and order an info packet. 

Everyone who has examined me so far is surprised that I'm not experiencing any tinnitus, so late one night in bed, I go looking for it. I can scarcely hear the waves down at the beach, and far beyond them is a barely perceptible high-pitched whine. It's been there for some time, I realize, but if I was ever aware of it, I assumed it was just the sound of my own head, or hearing itself, but it is indeed only in one ear. Of course now that I've found it, I can be aware of it whenever it is quiet. 

4 Dec, 2002 

The envelope arrives from Staten Island. There is a videotape and a series of articles written by their director of Stereotactic Radiation. The articles have only been published in their own newsletter, not in a peer reviewed medical journal. The video is as polished and manipulative as a late night infomercial. The work at Staten Island may well be cutting edge and may very well be the best answer medically. But they haven't convinced me with their sales pitch, and I've written them off. 

I have two choices left, House or Johns Hopkins. And until I definitely decide on one of them, I'm a Wait-and-See'er. 

19 Dec 2002

I fly to Baltimore, a city I'm very familiar with, having recently filmed there. I set up dinner with a friend, unpack and take the metro to Johns Hopkins. 

Again, but this time it's expected, I'm stepping into a large and busy medical facility. They've given me very explicit directions and offered help with accommodations, though I've found a good deal downtown on my own. The registration is long and tedious. I sympathize with those around me, some must be battling cancer, and their lives, I'm sure, are filled with the minutia of health care. 

I expect to wait as with all doctor visits and have time to review my literature for asking questions. But I am taken to the exam room just a few minutes after my half an hour registration regimen. Again, more of the same manual tests of sensations, this time by a young personable resident recently out of med school. She tests me with a very cool tuning fork/ hammer, that vibrates and holds its tone inside the narrow hollow core of a thick metal head atop the fork. This exam is the most thorough so far. I feel silly marching in place with my eyes closed, but apparently I've not demonstrated any effect of balance disorder to anyone so far. 

I do get a little time to review my literature while the doctor reports the results of her test to the specialists and they look at my MRI. Drs Rigamonti and Wharam enter, confirm with me that my symptoms are slight and then ask, "Then why are you here?" I'm a little puzzled, and then I realize they're wondering why I want to take action, if the current symptoms aren't affecting my lifestyle. A good question. I ask them if they agree that radio or micro surgery stand a better chance of good results if the patient has better hearing response going in. They do, but they strongly suggest that I wait three, or better, six months and get another MRI for peace of mind before making a decision. I ask them how accurately one can judge the relative size of a tumor between two MRI images when it seems impossible to line up exactly the same wafer of brain the second time around. They assure me a good technician at the same lab for both procedures with the same specs can produce an accurate picture. 

They address my other questions about radiosurgery. Though the doctors themselves, let me stress, aren't making any undue claims, I am curious why they would want me to wait if FSR is as noninvasive and safe as some other people do claim. The doctors are genuinely interested in my well being, speak highly of Dr Brackmann, whom I've told them will do my surgery if I decide so, and wish to hear of my course of action whatever it may be. They do not have a published study of their recent patients results yet, but they offer an email copy of such a work in progress. 

Back at the hotel, I'm a little doubtful now of my plan for prompt treatment. But I'm still heavily weighing surgery. Then I see an article in the Baltimore Sports section about a visit by Lance Armstrong to an area hospital, that alludes he wouldn't have needed brain surgery if the new BrainLab Novis shaped beam radiation gun was available six years ago. Is this something new? By my own experience, anytime I've read an article concerning something that I'm personally aware of, the gist may be correct, but the details in the article are always half untrue. And that's really to be expected when a reporter seldom is an expert regarding his subject. 

I look up Novis on the web. It is a brand name of a stereotactic radiation machine. Okay, I've been here. I chide myself for being so manipulated into second thoughts by the mere power of the printed word. One sentence by a naive reporter regarding a celebrity has had me doubting my two months of research and consultations. I am now less than a month away from my scheduled surgery.

6 Jan, 2003 

I am lucky that I have excellent health coverage in my industry. They have not argued with even one request so far. I am lucky I work free lance. I can schedule my own time off for recovery and have a job waiting at the end of it. And I am lucky that I am single, and that my time in recovery and out of the job market needn't affect anyone but myself. I am confident of my decision. 

Time will tell, ten years down the line, if FSR would have been the correct choice. It is not risk free. I just read a new testimonial on the ANA guestbook from a woman who lost significant hearing a few months after her FSR. Maybe the tumor has temporarily swelled after treatment. Maybe the fine fibers of the hearing nerve were already stressed and inevitably going to fail. Maybe the FSR itself zapped the nerve. Still, it is not the risk that bothers me. I don't think the inherent risk of FSR complications could be as daunting as the risks of surgery. I have no emotional or psychological need to know the tumor is in or out of me. I only care to try to preserve my senses.

Ultimately, my decision must be based solely on reasonably presented study of a series of recent patients. A study does not exist presenting the effectiveness of FSR at preventing long term tumor growth, because the present levels of radiation exposure have been used long enough to produce such a report. That is not the fault of the radiotherapy community, it is the fault of my tumor's bad timing. So, the pragmatic guy that I am, I am committed to Middle Fossa surgery by Dr Brackmann in three days. 

I have absorbed what I can in the last month, knowing I may never experience music or a movie quite the same way again, and almost surely not for several months after the treatment. I have a couple glasses of great wine, while my taste buds are still working normally. And, as a courtesy, in case the worst may happen, I've made out my will and as necessary, a living will and a medical power of attorney. I really don't consider death or coma to be any more imminent than it would be getting on a plane or even into a car. But being prepared is the polite thing to do. 

The risk of permanent facial nerve damage in the hands of a skilled surgeon, as Dr Brackmann surely is, is slight. I will have a period of perhaps hellish adjustment balance wise. I have been on countless airline flights, even a few times in an aerobatic airplane. I've been on boats, Navy ships, helicopters, camera cranes, and hundreds of roller coaster rides within a week's period filming and have peered off the lip of Half Dome at a sheer 4000 foot granite cliff. I've never been motion sick in my life, I can't tell you what it's like. That capacity may make my adjustment easier or tougher, I don't know. I know the vestibulars will be cut and I will have to adapt. I also know, it's within my power, completely up to me to regain my balance and eventually continue my recreational loves of running, cycling, skiing, and hiking, especially backpacking. I must risk my hearing to save my hearing. That is the one complication that I'm hoping for the best, but truly expecting the worst. We shall see. 

I have seen a lot of confusion, denial, and anger in the dozens, if not hundreds of personal stories I've been reading these past two months. The doctors didn't give me this disease. Without medicine, and science and culture, I wouldn't even know I had this tumor that would gradually kill me. The doctors, out of professionalism, profit and even altruism, have offered me a chance to minimize its damage. I am nothing but grateful to them. I can not blame any of them for believing almost exclusively in their own discipline and skill. Who would want a doctor that felt differently? 

It's my body, my tumor and my job to sort out what treatment suits my condition and my expectations of a remedy. Surely there are quacks and egotists and incompetents out there. The Internet and the democratic knowledge it makes accessible to all of us is as much a medical miracle as microsurgery or FSR. There is really no excuse, other than financial, for allowing myself to be bowled over into a treatment not of my choosing. I have enormous empathy for NF2 patients, and those whose tumors were caught too late to avoid some of the serious complications. The medical community has not come to a consensus on treatment. I've made a decision based on my age, the severity of symptoms, the probability of complications from the treatment versus the tumor itself, of what conditions I feel I can and cannot live with, and my acceptance of a problem that isn't going to resolve itself. 

It's reiterated in these pages over and over, but I've realized that it is true: No one I could find on the Internet or in any doctors office should decide for me what I should do. As it should be, only I can make this decision based on whatever limits of knowledge I've deemed necessary to live with and take responsibility for my own decision. I have no control over the existence of the tumor, but I can choose what treatment to seek. Having done that, I cannot control the surgeon's hands or the radiation tech's specs. Ultimately my greatest contribution is my own recovery. 

I'm sure I have no idea of how lousy I'm going to feel next week, or what the outcome may be. But I am looking forward to the challenge of dealing with what ever is coming. In the interest of avoiding a biased diary based on outcome, I have posted this prior to my treatment, and will update accordingly. Good luck to all of you.

Tom Newton <NEWTTAN AT aol.com>
Los Angeles, CA
January 2003

©

To Tom Newton's entry in the Patient Directory

Last Edited: Wednesday, August 13, 2003