Static

I've never been particularly good with static. If there is something wrong with the TV, I have to turn it off. That scratchy, buzzing noise drives me to distraction. I am not a fan of road noise or loud fans or rumbling, idling vehicles. If there is something clicking or rattling in my car, I must find the source of the noise and fix it. I hate unanswered call bells, fire alarms, tornado and emergency vehicle sirens. Got it? Incessant noise is not my thing. It never has been.

That's the cruelest, most ironic part of my whole tumor experience so far. My ear buzzes. All. The. Time.

I want to get away from it. Take a little break. Have a few minutes of peace but I can't. It doesn't change pitch or frequency. It's constant. It gets louder sometimes, especially when I'm really tired, but never gets soft enough to ignore. When I'm in a restaurant or loud room, it makes it impossible for me to focus on what's being said. When a room is very quiet, the buzzing is right there making it impossible for me to focus on what I'm doing. I'm having trouble at work. Sitting down to do paperwork is almost unbearable. What did I say earlier in my nurses note? I can't remember. All I can remember is that my ear is buzzing and I can't get away from it. My husband is talking to me. "Huh? Sorry. I wasn't paying attention to you, I was listening to the static."

I've asked my ENT multiple times for some help. "There's really nothing to do" he tells me. "You just have to get used to it," "get a sound machine," "it'll get better over time." These are not acceptable. They are just platitudes that do not placate me at all. They do not offer hope. He tells me that it's my brain compensating for my reduced ability to hear. Stupid brain. The one time I want you not to work at your optimum level, you have to go and be an overachiever. I find it hard to believe that millions of people experience this tinnitus (stupid sounding fancy word for a really annoying problem) and no one has figured out a way to fix it or at least, reduce it. There are some clinical trials, some terribly invasive surgeries, etc. that I've read about online. There are support groups and other unhelpful things out there but none of them offer any hope of making the buzzing go away. I don't want to talk about it. I want it gone. I also find it hard to believe that we can re-train our brains to make us walk, talk and eat after terrible injuries but we can't train it to stop being noisy?

If you can't tell, this makes me really mad. That's frustrating because I know I shouldn't be mad. I should try to deal with it. Be calm and carry on. Rise above and be strong and all that. (More platitudes.) Maybe talk to some people online, get a little support, find out that people don't stop functioning because their ears ring. I'm getting these headaches and my neck hurts. I'm pretty sure these things are due to me clenching my jaw all the time. That's not a way to deal with this. It just makes me more miserable which makes me sink, just a little deeper, into the the little pity pit that I dig some days.

I guess I'll just wait until I go talk to this otologist next month. Maybe he'll have some ideas, suggestions or coping strategies that don't involve masking the buzzing with static.

So it begins

I have a tumor in my head.

I've known for a long time that I might have one but why would I give it a lot of thought? I hoped that I'd dodge that bullet and live my life tumor free. I'm not a lucky person. I don't win stuff. I have a reputation of being a bit of a black cloud. I shouldn't have been so hopeful in the tumor department.

It's not a horrible tumor. It's probably benign. It's slow growing. Right now, it's not pressing on anything major or causing seriously, life-altering symptoms. It's just really, freaking annoying. It's an acoustic neuroma or, more accurately, a vestibular schwannoma. The Acoustic Neuroma Association says they are "a benign (non-cancerous) growth that arises on the eighth cranial nerve leading from the brain to the inner ear." They say that there is a chance that they are hereditary but really they don't know what causes them.

I woke up one Friday morning (September 28th to be exact) feeling like I had a bit of a cold and, per my usual, my right ear was stuffy and ringing. It wasn't too bad. The little man had come home from daycare earlier in the week with a runny nose which usually leads to both of us getting sick. I took a cold pill, went to work, did my thing, lived my life. The weekend came and went with no change to my ear. I started getting a little worried. My ear was popping. I could feel it. My head wasn't stuffy anymore but the stuffy, cottonball feeling in my ear wasn't going away. And the ringing/buzzing was getting worse. I get an appointment with my son's ENT and head on in. I hope that he will diagnose some kind of eustachion tube dysfunction or inner ear infection, pop a tube in my ear and send me home on some antibiotic/steroid drops - follow up in a week and 6 months, easy peezy. Nope. The first thing they test is eustachion tube function. Pass. Then they do a hearing test. My right ear fails miserably. I can still hear some of the tones but I have a really hard time distinguishing all the sounds in words. The audiologist (who has the personality of a damp sponge) does her best to enunciate but I just can't hear all the words. It's frustrating. Now one thing that I've always had going for me is that I test well. I can think through multiple choice questions and I get stuff right. Not this time. You don't get partial credit. There is no multiple choice. You can hear things or you don't. I don't. I failed this test and I don't like it.

I guess I need take this story back even further and let you know why I've known that I might have a tumor in my head, or why I thought that one day I'd have trouble hearing. Remember Gregor Mendel and his sweet peas? Well, between my two parents, there are four ears. Three of them are bad. Think back to elementary school science class. My odds in the ear game were crap.

My father was born deaf in his right ear. The family legend is that his mother had German Measles while she was pregnant and that caused his deafness. Then, several years ago, he almost completely lost the hearing in his good ear. It was diagnosed as a Sudden Sensorineural Hearing Loss (SSHL). It's a fancy name that means you suddenly can't hear like you could a few days ago and they don't know why. Dad chalks it up to getting older and only hearing out of one ear for over 60 years. Then there's my mom. When she was in her 30s, she started getting dizzy. I remember that when we moved to Tuscaloosa, she had a very hard time riding in the car in our hilly neighborhood. I was 12 when we moved here so my memory is foggy but she was diagnosed with an acoustic neuroma on her right side. It was awful. Diagnostic imaging was not what it is today and they put her through some awful stuff. They actually injected air into her spine and let it rise into her brain to separate the brain and nerves (and tumor) so they could get a good picture of whatever was going on in there. I remember her being so sick. Once they diagnosed her, they operated on her brain by drilling a hole in the back of her head, pushing her brain aside and zapping the tumor with a laser. They shaved her head. She had tons of staples running from her neck to up over her ear. They injured the nerve that controls muscle movement on the right side of her face (a common side effect of the surgery) so her face drooped. Her right eye didn't blink so they sewed it half shut. She couldn't drink out of a straw or use a spoon well. She couldn't smile all the way. She was sick, sick, sick and it terrified me. The end result of all that was that she can't hear out of her right ear either.

Back to the ENT visit. He tells me that due to my family history, I either have a SSHL or, more likely, an acoustic neuroma. He says that I need an MRI but in the meantime we need to treat the potential SSHL, just in case. He says that when he sends most folks for the MRI, they have about a 1 in 50,000 chance of an acoustic neuroma. I however, have about a 1 in 50 chance. Lucky me. He gives me a prescription for a two week course of steroids and we schedule an appointment for the next day to have a steroid perfusion, the first of three, directly into my middle ear. My dad had this done and it helped some so I'm on board. I want to be aggressive. I want to hear. I want to pass the next test. The next day, Friday, I go back. My ear gets all numbed up, a big needle is pushed through my eardrum and I'm perfused. It hurts. The numbing medicine stings like crazy. Having your middle ear filled to the bursting point with steroids hurts. I really can't hear now. I'm swimmy-headed. I want to go home and cry. I start the "why me" game but I don't have time to play that game today. I have to go back to work. I have to help my patients. I have to go home and be a mom and a wife. I'm on call that weekend. My mom is coming up for a visit and to babysit. There is no time for a pity party.

MRI day comes and my cold has returned full force. I can't breathe, my nose is running non stop, both of my ears are stuffy, I ache everywhere and my teeth even hurt. I didn't want to have this test done in the first place and now I really don't want it done. I know rescheduling isn't really an option so I go. Mom has this done every few years to monitor her tumor. She tells me it's not that bad and that they don't stick you in a tube anymore. She lied to me. To be fair, she has been doing this for almost 30 years and she had one of the first MRIs ever done up at UAB. As I said before, diagnostic imaging has come a long way. Next time I have this done, I'll need a Xanax. I don't mind the knocking and the banging, rumbling, humming and clicking. I mind feeling like a stuffed sausage in a tube. I put on my brave nurse/mommy/nothing-gets-to-me face and make the best of it while verging on a panic attack. I hope tears don't show up on MRIs. Today I give in to the pity party on my way home.

The next day, I get a random call from my ENT's office. When I call back they tell me that they called to let me know that they requested copies of my MRI report to discuss with me. I know what they've found. No tumor would have gotten the "your MRI was clear" message. I have an appointment the next day, another Friday, for my second perfusion so the plan is to do that and discuss my MRI. My ENT shuffles through the pile of films, tosses one up on his light box and there it is. A nice, bright white, fluorescing spot on the right side of my head. The report says there is a "4 x 5 x 8 mm enhancing mass in the right IAC [inner auditory canal] most consistent with an acoustic schwannoma. It protrudes slightly into the CP [cerebellopontine] angle cistern. ... IMPRESSION: 1. Small to medium-sized right sided acoustic schwannoma as described above..." While I find the images of my brain pretty neat, all I can think is "dammit, I don't need this." We discuss possible treatments, referrals to specialists at UAB, etc. I decide that I'm not going through that whole perfusion thing again and I leave, deflated. I send the hubby a text with my MRI picture and I get :-( as a return message. Yep, that about sums it up. Today there is no pity party. One of my patients is dying and I have to be strong for his wife. I get home and my little man is overjoyed to see me. Today he is my ground wire, my center, my life. He reminds me why I can't and won't let that glowing dot on my brain ruin my life.

Now I'm in that waiting phase. I have an appointment with an otologic/neurotologic surgeon at UAB's Kirkland Clinic early next month. I'm trying my best to deal with not being able to hear and cope with the constant, high pitched buzz in my head. I'm in research mode and burn most of my free time online trying to make sense of the tumor in my head.