One of the things I’ve talked about before was the lack of emphasis by all the medical folks on maintaining the opening of my mouth during treatment. They were (and are) all wonderful people, and I wish this part of things had been addressed before it got to this point. After nine months of eating through a tube, plus the radiation to the jaws, and the lack of general use, my oral opening went down to about 15mm. After seven years, it’s down to around 12mm, worsening despite efforts with the torture device for passive stretching. Part of the problem is that this came about long after the problems had solidified, with the fibrous threads and scar tissue really taking hold and conspiring to continually clench my jaws together.
We – and by we, I mean my mom – spent days on the phone, trying to find anyone who had experience in dealing with extreme cases like mine, or who could offer any help at all. Some of this is for obvious reasons: I need to be able to open my mouth, and if it continues like this, that won’t be possible at all. Some of it is psychological: with a vibrant imagination, I can envision situations where I’m unable to breathe and the EMTs/medical folks are unable to help because they can’t get my mouth open. From time to time, this actually induces a bit of a panic attack, which feeds the really nonexistent emergency, which in turn feeds the panic. Not a good cycle to be in at all.
After hitting dead ends and receiving promises of callbacks, I resigned myself to having to expend really serious time and energy hunting around the country. But, we got a call back from one of the ENT offices, saying they might be able to help. “Might” is better than “no”, so on Thursday, we will be heading over to see this doctor and determine if there’s anything they can do to get me back on track from an ending I can see all too well.