Since Damian asked: pics of the new teeth! Bonus inclusion of the view of the paralysis of my lower left lip and cheek area – hey, fuck you, cancer, you’ve had two tries at me and haven’t killed me yet! Excuse the ratty shirt, as this was a break during manual labor outside.
At the beginning of February, I went in for a bilateral coronoidectomy, a procedure that (it was hoped) would give me a larger oral opening and relieve the paltry 10mm space that was making it virtually impossible to eat, allow the dentist to work in my mouth, and so forth. That procedure was – for my circumstance after seven years of an ever-reducing opening – a resounding success: intraoperatively, they managed to open my mouth to 30mm before my jaw started dislocating. A few days after the operation, my opening was at 15mm, and during the followup last week, measured at 18mm. The single biggest problem is that those muscles are so unused to working that opening my mouth only using those muscles doesn’t really show the extent of the opening.
And so it was today at the dentist, whom I visited to talk about teeth. Implants are pretty much out of the question given the radiation to the jawbones and the risk of osteonecrosis (not to mention the possibility that the implants would simply fail to stay implanted and the potential of the posts to fall out, much like one of my repaired teeth that had a post buildup did), so our discussion revolved around dentures, and specifically, full or partial, and were any of the remaining teeth viable? I have six teeth remaining on the bottom; those all need to go, as they are either lose and in danger of snapping off, or they have recurrent cavities around the edges of where the crowns have been placed. On top, I have ten teeth left, all of which are in some degree of decay, but all but one of which are actually in fairly good shape, considering.
But, we’ve reached the tipping point on the tooth business, and instead of fighting a losing battle for the top teeth, which may have supported a partial denture but which would eventually have to come out anyway and thus result in the requirement to do a full denture, I’ve decided to go ahead and bit the bullet (so to speak) and have the rest of the teeth extracted. Since all my extractions are things I have to pay for myself, as I have no dental insurance, I’m hoping my oral surgeon will cut me a deal.
Today they also did impressions at the dentist’s office, an adventure in and of itself, since my opening is wider, but not as wide as a normal person’s, and the usual impression trays were still not fitting into my face. A little wrangling and adjusting/shaving down some trays, and away we went, managing to get all the impressions done on the first try each. Wondrous!
In about ten days or so, I’ll be heading off to have the teeth pulled and then to the dentist post-extraction to fit the pliable membranes under temporary dentures while the bones heal and my mouth reshapes itself. From there: hard plates, and a real full mouth of teeth for the first time in over half a decade. It should do wonders for my nutrition, which has taken quite a hit as more and more teeth have been yanked.
Overall: although I’d have preferred not to have been doing all this during the spring, as it’s put me behind on my gardening work, it’s still movement in the right direction to get back to some semblance of normality. Or as normal as things can be, anyway.
Guess who has some potential good news about getting their jaws pried apart? Me. After waiting three weeks to get an appointment with the original ENT who did my surgery, and then waiting an hour and a half past my appointment time to see him today, we talked to him about options to do something about the horrible trismus – going on over seven years now. The beauty of having been operated on by the most respected and senior fellow in his department at that hospital: the ability to be walked personally, by him, up a floor to talk to the surgeons there, and be put into the hands of another maxillofacial surgeon who took about three minutes to suggest a surgery I’d read about some time ago, but which everyone else seemed to think was probably not worth doing: coronoidectomy. He couldn’t guarantee this would solve the problem, of course. But at this point, having an oral opening down to 12mm, which is 2mm lost in the past year alone, I’m willing to try anything – even though it means being intubated through the nose and more PT afterward to keep working on getting back to some semblance of normal (and hopefully wide enough to get teeth in, given the rate at which they’re crumbling under the aftereffects of the radiation). So, they’ve put it in with their scheduler, who will call us with some dates and we’ll go do this thing to see if it will help. No one looks forward to surgery, but I am, as they say, cautiously optimistic.
Of the mouth, that is. We visited with a new ENT who examined me for the first time, and I have to say that sometimes it’s nice to get some fresh eyes on things – someone who is not completely familiar with my long, oddball history with oral cancer and the aftereffects. He thinks the problem is the muscle at the mandible rather than fibrosis, but wants to look at my last CT to check it out. He also wants to use the flexscope on me (that’s the one they snake down your nose to look at the back of your mouth and throat when you can’t open your mouth), something he could not do Tuesday, but wants to do next Tuesday on our followup, by which time he will also have the CT report and the scan itself. He asked if, when I ate soup or other liquid-y foods, I had issues with leakage. I told him I had gotten pretty good at keeping it in most of the time. He asked me if I drooled, at which point I laughed, because yes, in fact, from time to time, I do. He pointed out that I have some paralysis on the left lower side of my mouth, which I’d not really noticed as such before – I’d chalked it up to the chunks of muscle and nerve they removed during the surgery, which in turn affected my ability to fully close my mouth. I was right, but not for the precise reason.
In any case, we go back next Tuesday to see him again at which time we’ll have some kind of idea on a possible path forward. Which is good, because not being able to open your mouth is a real pisser (and because I have another tooth that’s cracked half off and it needs to come out, which would be a lot simpler for all of us involved – particularly me – if I could open my mouth a bit wider than 12mm).
So again, for those of you stumbling across this site because you searched for oral cancer: make sure that even when you’re feeding through a tube that you’re opening your mouth throughout treatment. Trust me, you do not want to go through the things I’m going through.