My Acoustic Neuroma

The Attack of the Killer AN

or

My Amazing True Story of Radiation

So there I was, living my “normal” life, minding my own business, not bothering anybody, when things started to change inside my head. Not the “I hear voices” kind of thing, but a true physical change with cells multiplying and dividing and who knows what other mathematical things cells do when they go rogue. I didn’t know things were changing, of course. Perhaps if I had known what an Acoustic Neuroma was or how it begins with Schwann cells running amuck on the auditory nerve (also called the eighth cranial nerve, it is responsible for sending information about hearing and balance to the brain) I might have had second thoughts on taking the retail sales job at a major national retailer that had me climbing a 12-foot ladder in our stock room. Yeah, I might have reconsidered that. But I’d never heard of an Acoustic Neuroma, much less the name of the cells that cover our nerves, or that once in a great while they can go crazy on us. I didn’t know it was growing because I hadn’t developed any symptoms and apparently as the one auditory nerve on my left side was being slowly assaulted, the nerve on the right side began to compensate and take over the entire job of keeping me upright and walking in a straight line. Along with the bad things, our bodies can also do amazingly wonderful stuff without us even knowing about it. I’m so glad, because a vertigo attack on a 12-foot ladder doesn’t sound like that would have ended well for me.

I did have something happen to me that I’m sure was AN related and it’s interesting that I even remember this, but I do. Sometime in the mid 1990’s I remember experiencing two separate instances of very short-term dizziness. I can’t remember what I had for lunch yesterday, but I remember lying in bed circa 1995 and having the room spin around me like perhaps I’d had one too many tequila shooters. Well, I’ve never even tried tequila shooters, so that wasn’t the reason. I thought maybe I had water in my ear and that had un-balanced me. It was a brief episode lasting only that night. I remember another time that happened also, but it too, was short lived. I doubt I even mentioned it to my husband. It passed, and life as I knew it went on. But the AN was still slowly growing, adding 1 to 2 mm a year, which to me sounds like something out of a 1950’s Sci-Fi thriller. The Thing Growing Inside My Skull!

Fast forward to the late fall of 2004. I was reading an article in the paper about a local news anchor that experienced a horrendously loud feedback from her earpiece and it left her disabled and unable to work in broadcasting. She was suffering from extremely loud tinnitus. It was one of the worst cases her doctors have ever seen. I was so saddened to read of her plight and felt very sorry for her. It was at that same time I also noticed that I had a little buzzing going on in my left ear. My husband has had this off and on for years and his is caused by wax build up in his ears. I figured that’s what I had too. So I made an appointment to get my ears cleaned out. Well, it was clean as a whistle. But it still buzzed and it was getting louder and by then I also had “fullness in the ear”. I didn’t know that term at that time. I just said, “Hey, feels like I went up the mountain and my ear didn’t pop when I came back down.” Or, “It needs to pop.” Or, “Jeez, my ear is driving me crazy!” I went to my family physician and for the next month or two we tried different things, and nothing made much difference. Bummer.

Finally my doctor referred me to the Ear, Nose, and Throat doctor. This was in April of 2005. I had my first hearing test and the left ear did have a significant hearing loss. That came on fairly quickly and I noticed it first on the telephone. People’s voices on the phone became garbled. At the doctor’s appointment, after my initial examination, I was given a prescription for a nose spray and advised to try a sinus rinse; a process of squirting a soothing ph balanced solution of water up your nose so that it comes out the other nostril. That’s a very Hindu kind of thing. Actually I do have allergy problems and that helped with some allergy issues, but I still had tinnitus and fullness of the ear and now the hearing loss. My doctor sent me to have a CT scan, and he told me that I “had no tumors.” I don’t think I’ll ever forget that he said that! He put tubes in my ears, like they do for children. There was no fluid behind the eardrum. I told him I had a funny taste in my mouth. He said, “Well, I don’t know what that is.” Another phrase to remember.

Now if I could go back in time and do that over again, I would. Because then I would say, “Okay, let’s review. I have hearing loss, fullness of the ear, a funny taste in my mouth and tinnitus. What do you think this could possibly be?” But I didn’t. And when I got home the only thing I “Googled” was tinnitus because that’s what I was trying to learn to live with. If I had Googled all of those symptoms I could have diagnosed myself. The key symptom my doctor was missing in my case was the dizziness. I would have had an MRI if I’d complained about being dizzy. I never had that symptom, except back in the mid-1990s and that never even entered my mind. A somewhat rare disease never entered my doctor’s mind either. Some ENTs are experienced with ANs; many are not. I must have gotten the one who wasn’t paying attention on the day they had the AN lecture. I know this now. At the time, I thought…well I don’t know what I thought. Maybe I didn’t want to think about it because then maybe it would just go away. Yeah, right.

So I didn’t go back. The little ear tube fell out of my ear, and for whatever reason, the fullness in my ear slowly went away, and for that I’m grateful. Then I got sidetracked from my own health problems when my husband told me that when he was walking from his office downtown to go to an appointment some blocks away, he experienced shortness of breath.. He quickly got to his doctor who sent him to a heart specialist who ran the tests on him. From there he had an angiogram and then angioplasty and three stents put in to repair his clogged artery. We discovered that he’d already had a “silent heart attack” at some point. This was a very stressful time for him and me. But he recovered from his procedure quickly and was back to work and he went from zero prescriptions to five just like that. This was in November.

Around that same time period I noticed that when I touched my face near my left ear, it felt numb. That scared me a bit. Okay, that scared me a lot. I called up and made an appointment for my annual physical. My appointment was for the first week in January. My doctor did the usual stuff and then I mentioned… “Oh and by the way, my face is numb.” Wow, did he move fast. He came right over to me and started asking questions and had a concerned look on his face. He said it was a nerve problem but he didn’t know why. (Well, he did know why, or at least guessed but he didn’t tell me that until later!) He referred me to a neurologist. But, in my clinic there was only one because the other one had just retired, so I couldn’t get in to see her until March 6th, five days after my 60th birthday. When I did see her, we went over my symptoms and by then my facial numbness had spread across my cheek to my nose and to my lips, up into my temple and part of my head and eye. It was hard for me to explain, because it’s just the skin. If I were poked with a needle, yeah, that would hurt. So that got me an MRI a few days later. Monday, March 13th, she called me.

My first thought, since she woke me up out of my morning slumber, was “ Oh my God, it’s the doctor!” The neurologist is personally calling me on Monday morning. This can’t be good. So she tells me they found a mass. I have a mass! So what exactly is a mass? It’s a benign (okay, that’s good) tumor (okay, that’s bad) called a Vestibular Schwannoma. Okay, never heard of it. And we’ve made you an appointment with the neurosurgeon. A NEUROSURGEON! After I hung up the phone, I sat on my bed in stunned disbelief. To this day I can return to stunned disbelief in a nanosecond, if I let myself. So here I am, 60 years old, and my first thought was, “I want my mommy.” Then, for a moment I felt her arms around me, telling me everything would be okay. My mother died when I was 15, but nearly 45 years later she came to give me a hug. Comforted, but still shaken, I went in and stood in the shower for 15 minutes trying to figure out how to tell my husband he has to come home from work and take me to the NEUROSURGEON. Well, that wasn’t an easy call to make. I didn’t want him to have another heart attack! I kept saying, benign, benign, benign. I also thought, “Well, so far my 60’s suck.” But, then, I was also happy to know that my symptoms were something. And it had a name.

That first appointment didn’t get us too much information. That doctor was handing me off to another doctor who would go over my treatment options. That would be Friday. So I had from Monday to Friday to look up everything on the Internet. And worry my family and me sick. I found the Acoustic Neuroma Association website and forum and decided to join. I was greeted with friendship and information, which I appreciated. Friday finally came and my husband and I saw Dr. M. We looked at my MRI and yes, indeed, there was this thing inside my head. Eeeeek! He explained about Schwann cells coating the nerves and sometimes a tumor arises from those cells in the auditory ear canal. And while this is a benign tumor, it probably would continue to grow, which is not a good thing, and he had plans to keep that from happening. He told us I was a good candidate for radiosurgery. Which meant that the dreaded brain surgery that I’d been afraid they would tell me to have had been replaced with radiation treatment instead. Sounded good to me! Well maybe not good, but better. This would be done at the Gamma Knife Center of Oregon at Providence Hospital in Portland, Oregon since that was the only game in town at that time. Since then a Cyberknife machine has been installed at another hospital and now there are more choices for radiation patients in our area.

It was still difficult for me to believe I was sitting in a neurosurgeon’s office discussing a brain tumor inside my head. This was just insane, bizarre and highly unlikely this was actually happening to me. So when Dr. M was about to leave I said, “I can’t believe I have something like this. I mean…I’m so average.” He turned to me and said with a smile, “Well, this is an average tumor.” So, okay, my AN wasn’t going to make the cover of Neurosurgeon Monthly, still, in my wildest nightmares, “brain tumor” wasn’t on my radar for me or anyone I know for that matter.

April 18, 2006, a year and a day after I first saw the ENT, I had my Gamma Knife treatment. My husband and I arrived at 6 a.m. One of the hardest things is to show up like they want you to show up. No metal of any kind. No makeup, no hair spray or mousse; no female beautifications. I don’t have a sports bra, so that meant no bra for me. All I could do was wear a baggy sweatshirt. Lovely. I know that should not be a matter of great concern at a time like this, but it was still uncomfortable for me to "au natural". Gamma Knife or no Gamma Knife, a woman's instinct is to try to look her best.

A week or so before the treatment I met the doctor who would be working with Dr. M at the GK Center and had the tour. I’d seen the CD they gave me to explain the procedure. I was about as ready as I’d ever be I guess. I thought that this was going to be an interesting experience and in a way, I was sort of looking forward to seeing what this was all about. I didn’t count on the strength of the Xanax that they gave me soon after arrival. I went to LaLa Land pretty fast. I really didn’t much care that they were going to put a head frame on me that had tiny pins that would stick into my head. And I didn’t much care that they would tighten it up with a screwdriver. I’d had the anesthetic cream put on to numb the area and then anesthetic injections in the four pin sites to further deaden the tissue, so all I felt was the pressure of the head frame being applied. And they had told my husband that I would probably not remember much of what was going to happen to me that day. Well, shoot. So, once I was framed up, they loaded me up and took me to another building to have another MRI done. This one was to fine tune the measurements needed for the GK. The doctors would look at this and determine the best course of action. I remember going over there, lying down on the table, and then being in the wheelchair van on the way back. I managed to have a bit of small talk with the driver and I said, “I wonder what this is going to cost?” He said, “Oh, about $10,000.” Yeah, right. Maybe he meant the ride in the wheel chair van.

I was taken back to my room and my husband was there waiting for me. He was watching television and I sat in the chair trying to be somewhat comfortable with a head frame on my head and trying not to drool. Then they were ready for me and we went into to the GK room. Now, all I remember is having something else attached to the head frame and lying on the bed. When I had the tour they showed me the helmet type things lined up on a table that they use. There were several of them and there were different sized holes all over the top of the helmet and in the course of the procedure different ones would be used. They attach somehow to the head frame I had on. It was just so “other worldly” to me, like I’d stumbled into the “Spock’s Brain” episode of Star Trek. They all left me and then they played my CD for me to listen to as I lay in the quiet room, getting bombarded with 201 highly focused beams of Cobalt 60 Radiation. I remember part of one song. I remember my doctors buzzing around me, sitting me up, laying me down. I remember being back in the room with my husband and talking about gardening with the nurse who, in my opinion, really runs the show. The doctors said I did great and that I was having a good time. So the Xanax made me compliant, relaxed, happy as a clam, and forgetful. My husband said he heard laughing in there, and Dr. M later said I did great and was having a good time. I suppose it’s nice to know I’m a happy drunk. I already had the funny hat, but I doubt there was any dancing on the table going on.

So at 11 a.m. we went home whereupon I got a massive headache. My husband shoved Tylenol at me. He went to the store to get my prescription and to get us lunch. I was hungry and I figured we needed fast food, even though we seldom indulge in that anymore. But I tell you, that Whopper and fries sure did taste good. He shoved more pills at me, this time Dexamethazone, a steroid given to reduce swelling. I started on a large dose and then tapered off of that for a week. Then, I toddled off to bed where I slept a dreamless drug induced sleep of a very tired woman. Later that evening family arrived with more food and I woke up to them bustling about in the kitchen. They were very concerned and caring. I’m sure I looked like I’d been drug through a knot hole backwards, but nobody gasped to much, so I guess I didn’t scare them that bad. My husband probably forewarned them. I had to take those steroid pills every 6 hours, so I had another dose at dinner and another dose at midnight.

I woke up the next morning feeling the effects of those pills. Zowie, wowie, I could have climbed Mt. Hood! I felt great. Beyond great. Nothing hurt. No aches, no pains, no headache, energy to burn. Wow! My auntie came over to be my caregiver and as she slept, I went for a walk. She had to practically superglue me to the chair to watch one of the movies we had lined up to see whilst I “recovered”. This is probably as close to realizing what a drug addict goes through that I’ll ever see. I was higher than a kite. My caregiver went home and then I began my downhill slide. Over the course of that week I turned into a shaky old woman. Insomnia is a side effect of that steroid. This was the worst part of my whole treatment. The weather was nice and I spent a lot of time sitting in our outdoor swing seat, just staring. I couldn’t concentrate enough to read. I’d watch some television. I couldn’t nap. I was cranky and impatient and short-tempered. I was so glad to get to the last of those steroids and to be able to sleep more than 2 hours. With great relief, my sleep returned to me.

I just had my birthday so it is almost a year since my diagnosis. My last MRI shows necrosis has begun which means that the tumor is dying and there should be no more growth. But nobody gets an Acoustic Neuroma without it affecting you in some permanent way. Those of us with ANs say that it may be “benign” but that doesn’t mean it’s friendly. I am left dealing with very little hearing in my left ear. There are only a few options for hearing aids for us and they are expensive and it may be that I might not like how it works and wouldn’t use it anyway. I have tinnitus, which I’m trying to learn how to manage. That is a very cruel irony that you can be deaf or nearly so and still feel like you are hearing noise from that ear. Actually it’s in your brain. It’s a phantom noise, and once your brain latches on to it, it is unlikely to let it go. Loud environments and things like too much salt, sugar, aspirin and caffeine can make it louder. I use a fan at night for “white noise” to help even out the tinnitus. Thankfully my husband is a sound sleeper and doesn’t object. Sometimes I think that I hear a radio turned low coming from another room. I’ve heard that the brain tries to make sense out of the tinnitus and that’s why people say that they hear people talking, or like me the sounds of a distant radio or television. So, I guess I did end up with “voices in my head” after all. As long as they don’t start telling me what to do, I guess I’m okay. Directional hearing is different. The sounds hit the bad ear and bounce to the good ear, so that I think that sounds are coming on my right side when in fact they are on the left side. It’s rather disorienting. I am unable to work in a retail store, where I’d worked before because the noise and stress can magnify the symptoms tremendously. I still have facial numbness on the AN side and a salty, sometimes metallic taste in my mouth. The left side of my tongue feels like it’s been mildly burned by something hot. That varies in intensity from day to day. So the symptoms that led me to find out what I have are all still there. I will probably have them the rest of my life. For some people balance isn’t a big issue and that’s been true for me. I do have some issues involving my balance, but it shows up in different ways. One is “car anxiety”. I can drive okay, but being a passenger can make me, for want of a better word - nervous, especially if there is a lot of extra movement going on such as passing big trucks, people pulling out in front of us, lots of vehicle commotion. I think we’re going to crash, or somebody is going to hit us. It’s very strange and hard to explain. It turns out I’ve had this problem for a few years. I used to go with a girlfriend on day trips for her sales job, just to keep her company. We had a great time, except that I started flinching and” braking” and carrying on in the car. She’d say, “Do you think I’m just going to hit the back of that car?” I say, “No, no, it’s okay. You’re fine.” Flinch, flinch.

I know I’m extremely lucky to come away from this with the problems that I have. Believe me, it could be a lot worse, and I know that. It could have been better, too, but that’s not what was given me. This is not life threatening. Not anymore. Dr. M and the wonderful team at the Gamma Knife Center killed it. Thank you very much. But, this is perhaps the most annoying, irritating, frustrating, and medically expensive thing I’ve ever had to deal with and coming to terms with this has been challenging.

So what I still have is a great family and my life. My husband has been wonderful. We decided that a brain thing and a heart thing six months of each other was enough medical stuff to last us for the rest of our lives. My people, those near and dear to me, have been supportive, kind, and curious about this crazy thing my body developed. And my AN family has been wonderful too. I love the fact that they can be serious and have so much information to offer and then we can be silly and use our cyber sense of humor. I am grateful to modern medicine and the miracles that are performed daily around the world in healing us in ways that were never even dreamed of not that many years ago. I repeat: 201 highly focused beams of Cobalt 60 Radiation being focused onto a tiny portion of a tumor inside my head! In keeping with my Sci-Fi analogy, I should have manifested some super powers after my treatment, but I’ll take cured. That’s amazing enough, don’t you think?