Advice for oral cancer patients

It’s apparently pretty much inevitable that if you don’t have your teeth pulled prior to surgery/radiation/chemo that you’ll end up losing them/having them pulled at some point down the road, based on everything I’ve read, heard, seen, and experienced. So, a bit of advice both very specific to this and for general purposes: make sure you’re keeping your mouth opening as free as possible during treatment. No one really stressed this to me when I was going through treatment, and between the radiation itself and the disuse since I was eating through a tube directly in my stomach for nine months, the increasing closure, scarring, and atrophy snuck up and suddenly my opening was a mere 12 mm. Go get a ruler and see how tiny that is – or better yet, take your thumb and put it in your mouth. I can’t do that without it taking a bit of effort to jam my thumb in and scraping it on my upper and lower incisors.

It will be painful to keep the stretching going while also going through radiation because of the burns, and because the treatments sucks the life out of you, you won’t want to, but do it anyway (and heck, the docs will prescribe painkillers anyway). The alternative is to try to deal with it after the fact, either by using stacks of tongue depressors – not fun, very inconvenient, and not terribly effective – or by use of a passive stretching device, like the Dynasplint or Therabite. I tried the former, but sent it back during my fun-filled summer of surgery for a spot of lung cancer and the subsequent recovery. I have since picked up a Therabite, which has some pros and cons. The biggest con is that while the Dynasplint can be used hands-free with the balancing rods, the Therabite really can’t if your teeth are not in the greatest shape or have been weakened from the radiation and resultant xerostomia, as it’s a bit front-heavy. The Dynasplint also has a screw-like setting and hinged mouthpieces that allow you to set a particular stretch setting and still get the mouthpiece in and out without losing that setting. The Therabite unit is manual, which means you can go overboard and try to do too much at one time, but it is lightweight (plastic), and still has a gauge on the lever, although without a mirror or someone else to assist, you won’t be able to see the gauge. Since I work almost exclusively from home, it’s easier for me to use either device as often as I wish – right now, given the rate my teeth are falling out/having to be pulled and the fact that I need to be able to open far enough to get dentures in, very often every day – than it would be for someone who works in a traditional office, but the Therabite has a carrying case and as mentioned, is lightweight.

My single largest issue with both is the mouthpiece pads. While I liked the Dynasplint hands-free ability, because I could not open my mouth widely enough to get the thing in my mouth with both pads on the mouthpieces, I could only put one pad on the top, while leaving the bottom plain plastic. This led to the device swinging left and right if I moved my head, to the point where in one instance, the entire thing almost came out of my mouth. I can just barely get the Therabite in my mouth with both upper and lower pads on the mouthpiece, and this is actually a good stretch without even squeezing the lever at all.

The number one pro the Therabite has on Dynasplint is cost. The Dynasplint is a leased device, and because my insurance company would not pick up the cost, completely out of pocket to me, month after month, regardless of whether or not I was using it. The Therabite I actually picked up via Amazon, for about four hundred dollars – about one and a half months of a lease on the Dynasplint.

Of course, most or all of this could have been avoided if it had been made vitally clear the combined effects of radiation and lack of use on the jaws. The limited opening makes eating painful and difficult (and eventually, may make eating off-putting altogether), dental work more painful and difficult than it is already, followup exams with the ENT painful and difficult, and so on and on. It also presents issues with other medical procedures that may require intubation – like going under the knife to remove a wedge of a lung, for instance. Luckily, all of the medical staff have been able to work with me to get things done, but sometimes late at night when I’m trying to get to sleep and I have a spasm roll through my neck, my throat gets tight and I wonder if, in the event of a real emergency that required something be done in my mouth or throat, whoever was attempting to treat me would be able to do so.

So there is my advice: keep stretching those jaws even if you’re not eating real food for the duration, and even if the burns from the radiation make it painful at the time. You’ll be glad you did when it’s all over.