Throughout my late teens and most of my 20’s, I lived in ignorant bliss when it came to my ears. My “bad” ear was stable enough that it didn’t bother me. Once in a while I would have nagging thoughts about the cholesteatoma coming back, so I would make an appointment with my ENT to reassure myself. He was affiliated with Yale, so I figured he would know what he was doing. He said my ears had obviously been through a lot but that things looked fine. All the time I wondered if I could really trust him and if maybe he was just too nice.
Something about reaching 30 made me start thinking more seriously about my health issues. I decided to find another ENT and get a second opinion on the state of my ears. I did a Google search for “best ENT in CT” and found someone else nearby.
On my first visit, I am brought into the “Micro Room”, which is a stark white room with a reclining exam chair in the center. The windows along the back wall are covered with vertical blinds behind which there’s nothing to look out at except a flat gravel roof and brick walls of the buildings next door. The only pictures on the walls are schematic diagrams of the inner ear and a poster promoting the cessation of tobacco use. Behind the chair, out of view of the patient, is a cabinet with innumerable drawers housing a plethora of medical equipment. There is a swiveling metal arm similar to the kind you see in a dentist office, except this one has something like binoculars on it instead of a lamp. That is the microscope that they will use to see what’s going on inside my head.
I sit in the chair and face the tobacco poster. It’s a slightly abstract drawing of a man’s face with arrows indicating all the areas that tumors can develop if you don’t quit chewing tobacco or smoking cigarettes. I look at the linoleum tile floor and around at the ear diagrams. I wonder how many ear diagrams I’ve seen in my life, and yet, if you sat me down with an unlabeled one and asked me to name all the parts, I’d have to stop after about three words. As I sit there idly, I can feel my anxiety creeping up. I try to soothe myself with thoughts of what I’ll do later that afternoon.
After a while, the doctor comes in. He is younger than previous ENTs I have visited but I realize that the older I get, the more youthful doctors seem by comparison. We talk about my situation for a few moments before he lays me back and takes a look in my ears with the scope. He explains that the right ear has tympanosclerosis, or calcification of the ear drum. The ear drum is also heavily scarred from childhood ear infections and tubes.
Now for the bad ear. He is surprised at the condition of my left ear and asks me how often I have had the mastoid cavity cleaned out, and when was the last time I had it done. I can’t remember. “About a year ago?” I underestimate. My pulse quickens as he comments on the horrendous state of the cavity and I anticipate that a cleaning session is about to commence.
When I was 9, after my radical mastoidectomy, I added a new medical procedure to my repertoire. The not-entirely-pleasant mastoid cavity clean-out. Or simply put, getting my ear suctioned. I’ll spare you the graphic details of a radical mastoidectomy but visualize, if you will, taking a melon-baller and scooping out the inner ear a couple of times. Removing all or most of the functional parts of the ear and even some of the skull bone in the area. You’re left with a cavity, or a bowl. An empty space. Since the normal function of that area has been destroyed, the ear can no longer clean itself out naturally. So stuff builds up in there. Not copious amounts of stuff, but stuff. Dead skin cells, ear wax, who knows what else.
As a kid, my ENT at CHOP (Children’s Hospital of Philadelphia) would bring me into a darkened room and have me lie on an exam table. His microscope was connected to a camera which displayed the images on a t.v. screen on the wall at the foot of the bed. I always squeezed my eyes closed because I was terrified of seeing my own insides (or anyone else’s, for that matter). As I lay there, he would insert the suction in my ear and I would feel a light tugging. The device would make slurping sounds, like when you’ve reached the bottom of your milkshake but continue to suck at the drops on the bottom of the glass. Sometimes the left side of my tongue tickled as he poked and prodded inside my head. My mom would watch the t.v. screen with interest as the doctor commented on the process. It usually lasted a minute or two and then it was over. If I felt dizzy, I would lie there a little longer until I could function.
My new doctor is surprised that the Yale doctor hadn’t told me I should come in more often for cleanings. My heart sinks a little. I’m frustrated that I haven’t been given better information about my ear (or perhaps I chose not to comprehend what I’d been told). I make a mental note to put forth more effort to ask questions, research and be an advocate for myself.
At first the suction feels good, like scratching at an itch I can’t otherwise reach. It has literally been years since my ear has been suctioned. As he manipulates the tool down further into my ear, it becomes a little uncomfortable. I try to focus on something else, to breathe steadily and relax. But my body is tense: my shoulders stiffened and my hands gripping the arm rests as if I’m expecting to be thrown from the chair at any minute. Breathe… Focus on your breathing, I think to myself deep breaths…
Now the sensations have move beyond uncomfortable. There is painful tugging, as if he is pulling on a scab. “Ow!” I quietly exclaim. Always a courteous and obedient patient, I try not to make a fuss. The tugging, scraping and tickling sensations continue as doctor mutters about how much debris is in there. After several minutes of this, my attempts to remain calm have been forgotten and my focus now is to keep from breaking down in tears.
I’ll admit now that I was feeling very sorry for myself in that moment. It wasn’t fair that a young, healthy person like me would have to be subjected to this medical torture. Not to mention, I didn’t have good health insurance and here he was talking about how I needed to come in for ear cleanings every 3 months. How could I pay for all that? My friends were out spending money on fun things like vacations and houses and… student loans.
Finally, another great tug and the feeling of a chunk of something being ripped out of my ear is more than I can handle. The waterworks turn on. I sniffle quietly as the tears roll back towards my ears. The assistant puts a comforting hand on my arm. “It’s okay honey, just let it out.” Little does she know what she’s suggesting. “Letting it out” would result in a sob-fest that would be hard to stop, so I choke it down and wipe my eyes with the tissues she hands me.
Mercifully, the doctor determines that he has done enough damage for the day. He prescribes ear drops to put in every night and instructs me to return in several weeks time for further cleaning. He tries to cheer me up by saying that we made progress and that if we stay on top of things from now on, it won’t be so bad.
I cry in my car as I drive home from the appointment. I feel defeated. Knocked down. Scared. That night as I put the drops in, I cry some more. I realize that I’d been fooling myself to think that I’d ever be free of the issues that come with EEC. I realize that I am the only one who can choose to improve the situation. I resolve to get serious about my ears and figure out a way to pay for the medical bills that loom ahead of me.
As I write this, over 3 years later, I realize how important that crappy day in the office was. I didn’t know it at the time but it was a turning point for me. Since then, I was able to find a better paying job (one with amazing health insurance!) and I have been dedicated to getting my health issues reigned in. I’ve accepted that EEC is going to be with me for life but I have decided to take as much action as I can and try to stay on top of it. As I prepare for tomorrow’s surgery, I am keeping a positive outlook and remembering to keep it all in perspective.
xx
Uncommon Heather 