Ameloblastoma: What Happened Next

ameloblastoma surgery story
Risa Nye updates us on her progress with her ameloblastoma.
1 Comments / 15 Shares

N.B. Part one here: part two here:

​​Even though my doctor explained what would happen during the surgery to remove the tumor in my maxillary cavity, I was in denial. I heard but didn’t really hear what he said: he would remove part of my palate and would take “margins” to make sure not a single generative cell was left behind. (My highly aggressive—but benign—tumor, called an ameloblastoma, can recur from just one cell.)  I would likely lose another pair of teeth from my upper right jaw. And although he would be careful with the nerves, there would probably be numbness that might last a year, or maybe forever. Hard to predict.

The operation, which lasted over five hours, went pretty much as expected, but I found myself unprepared for the post-surgery life changes I faced and continue to face after a year. Sure, I understood about a liquid diet for a few weeks, and the fact that I would have to get used to wearing a prosthetic device (called an obturator) at all times. But I was not prepared for the way I would lose normal range of motion in my jaw. I could barely open my mouth to slurp soup from a spoon or milkshakes through a straw. My friends and family generously supplied me with all kinds of soups and soft foods, for which I expressed my gratitude. Even so, the time and effort it took to eat or slurp anything tired me out, and I found myself unable to finish much of anything—including favorites like pudding, Cream of Wheat and thick, creamy soup. One of the unintended consequences of this difficulty and discomfort has been considerable weight loss. No complaints about that part of it, but since I’ve been able to eat solid foods, I find myself carefully considering my choices based on mouth feel, texture, and estimated duration of consumption. For a while, I described this as “eating like a toddler” or being on the “It-Hurts-to-Eat Diet.” And it did hurt to eat.

 Even now, a year later, I’m not able to chew certain types of food, must cut anything chewable into tiny bites, and cannot eat anything I have to bite with my front teeth, which are still numb. Also numb: the right side of my mouth, inside and out, which means after a lifetime of being quite adept at it, I am no longer able to put on lipstick without looking. My upper lip and the area just under my nose on the right side are also tingly-numb, making it hard for me to tell if my nose is running (socially awkward and requiring that I keep copious amounts of tissues handy), or if I missed my mouth with my fork or spoon. In the beginning, when I was numb over a wider area, I didn’t trust myself with a fork at all. For the first few weeks, I would have a small hand mirror on the table next to me, so I could keep track of what was happening with my face while I ate. These days, I just issue a disclaimer to my dining companions so they will give me a heads up if necessary.

An obturator like mine serves two essential functions: it covers the roof of my mouth—more specifically, the two thirds of my palate that remain—and extends upward into the area where the tumor used to be, so I can safely eat and drink and talk and it creates a barrier between the oral cavity, nasal cavity and maxillary sinus. The appliance looks kind of like a souped-up retainer/partial denture with a built-in sidecar. When I take it out, I cannot make sounds that are distinguishable as speech. With no barrier between my mouth and those other cavities (which is what happens when my obturator is in its Polydent bath, just like my grandmother’s dentures back in the day), talking is out of the question. My prosthodontist, who created the version I wear now, had to rethink, recast, and recalibrate it so I can swallow easily and smile with confidence. This version is color-matched to my gums, and bears three replicas of my departed teeth which, because of their color and shape, are impossible to identify as imposters.

During one follow-up visit to my maxillofacial surgeon, I asked if he could show me on a model what he’d removed and how he did it. I knew the surgery had taken longer than he’d anticipated, and the tumor was closer to my right eye than I’d realized, but I didn’t have a real understanding of what happened in the OR. He said, “Sure!” and went to another office to find a model of a skull. He came back with it and pointed to where he’d made incisions and so on, but after about a minute I said, “Um, maybe I don’t want to know after all.” What I do know is that when my obturator is out, there is just a big void past my upper right canine.

The obturator has a sort of built-up “crater” (what I have called a sidecar is described in more technical terms as the “bulb” portion of the obturator, which is generally hollowed to make it lighter to wear) in the part that extends into the area where I have no palate (also known, sadly, as “the defect”). Water or other liquids of equal viscosity can collect in the crater which then acts like a reservoir. If I take a drink of water, for example, then look down at the newspaper or my phone, I’ll likely notice some leakage. My young grandson appreciated my ability to have whatever I drink immediately come out my nose, but I found it to be a nuisance. The latest obturator has a tiny hole located toward the rear of the crater, which allows proper drainage—at least most of the time. I’m working on the “drink and tilt back” routine to see if it fixes the problem. After a year of this, I’ve become used to the idea that I may always have the potential to do some pretty gross party tricks.

Several months after my surgery I posted a picture of myself with a red circle delineating the “numb zone.” At that time, it extended to just below my right eye, included most of my right cheek, and the entire right side of my nose and corner of my mouth. While I don’t check every morning, patting my fingers on my face in a circular motion testing for numbness or a tingling sensation as I used to, I can tell that the red circle would contain much less today. That indicates progress.

My doctor says the numbness and the “pins and needles” tingling might dissipate even more over the next year. I hope so. It would be nice to be able to give real kisses to my grandchildren instead of the self-protecting “air kisses” I give now. I’ve accepted that my jaw’s range of motion won’t improve much beyond where it is, which means farewell to licking an ice cream cone or having a hot dog at the ballgame.

 I don’t know if I’ll ever get used to my new normal. After only a year, it’s hard to predict.  People who don’t know I’ve had this surgery are shocked to hear about it, since it isn’t something you can tell by looking—or so they tell me. People I talk to also claim my speech sounds fine, but I struggle with the letter “s” and a few others, especially when I’m tired. Cold weather makes the whole right side of my face feel stiff and tight, as though I’m wearing a Phantom of the Opera mask. Sometimes the notion that “this is forever” hits me hard.

In the larger scheme of things—as I know full well—ice cream and hot dogs are not worth shedding a tear about. I realize I got off relatively easy. So, for now, I’m just taking baby bites and baby steps as I continue to heal and focus on the bright side.

Comment on this story using Facebook.