Is that a gun in your mouth

or the 3 finger salute for Trismus?

Trismus - First of all, you are not likely to even know what that is unless you have had radiation for head & neck cancer treatment or some other unfortunate incident that has produced this vice like grip of pain.

You have to have dealt with trismus before anything else. Much like putting on underwear before dressing. It is part of why I developed the Mind Food Body Program - all the things you have to get under your belt before the process of eating can begin.

Trismus was simply the most frightening thing I had ever encountered. In fact it was more frightening than the cancer diagnosis. At my worst I could not get a single finger in my mouth. My jaws would not open wide enough to allow it, commonly known as lock jaw (except its not the same thing), this is when the muscles spasm preventing the mouth from opening properly. Temporomandibular joint dysfunction for those on the medical terminology path.

Pain.

That’s a whole other issue that came part and parcel with the wonderful world of trismus. The pain was indescribable, it had to be endured if I was ever going to eat again. Most of the practice time was spent in tears, the sheer agony of jacking my mouth open whilst caring for teeth, will they crumble? Cleaning teeth was problematic and getting my mouth open became my only goal at one point.

Trismus, this side effect of head & neck cancer treatment is brutal and in many ways and for many people, will always be an issue.

What is not spelt out to you is that if you can’t open your mouth wide enough, you can’t eat. By eat, I don’t mean the second stage of chew and swallow, I mean the actuality of physically getting a spoon or fork full of food in to your mouth. Soup is a great place to start for obvious reasons, using a straw was not a helpful tip for me, I could not draw liquid up any length of straw and to this day still struggle with that due to changes in my mouth structure.

You have to deal with trismus before anything else. I started whilst pouring commercial formula into my PEG Tube, I researched and found not much to guide me or help me, I didn’t want to purchase an expensive contraption to undertake what should be a very simple process. I was told to not let it get on top of me (easy to say not so easy to do) but to undertake a stretch process every day.

So I sat every day with regimented precision the process of getting my mouth open again. Known as a “convenient index” - that’s an oxymoron, there was nothing convenient about it. In fact it took persistent dedication and some research to produce the “convenient index” of three fingers in an adult mouth as the normal range of mouth opening.

I produced my home made mouth jack (tongue depressors measured to my ideal range of mouth opening) with a rubber band, a texta and a stop watch. Days turned to weeks and my pain threshold was pushed to its absolute limit.

I did an episode on it here back in 2021.

The important thing to note is that perseverance pays off.

One of my food goals (and I also talk about the importance of milestones, goals and strategies in the Mind Food Body program) was to eat a lamburger with beetroot relish. I had to enable my mouth opening enough to incorporate the “bite” into a burger. The actual swallowing of food is a whole other lesson. The tactic is increments in advancement of stretch and practice, every day until you have your best “convenient index”.

First attempt 2021 success 2023

Trismus is a tough side effect of head & neck cancer treatment. I had the added benefit of yoga knowledge and was also driven by ensuring my dentist had good access too, I called it the three finger salute, it was the topic of most of my conversations (speaking with trismus means you speak through your teeth) and became my focus for a number of months.

At times it felt like a gun in my mouth. The pain, the unknown and was it all in vain?

I was literally left cowering in the corner with fear, pain and disillusionment. It was not an easy journey and once mastered then I began the long road back to eating.