I'm a big fan of treating trismus, and really like the Therabite device, which is dedicated to passively stretching the jaw muscle and is designed to do so safely and carefully. However, it's gotten very expensive -- over $500. I have had a lot of trouble finding a DME supplier willing to front the device to Medicare patients as they seem unsure whether they will be reimbursed (though they typically are if an articulate case is made).

The old-fashioned solution is to stack up tongue blades to place in the mouth for passive stretching exercise. The challenge with this approach is that the mouth has to open wide enough to accommodate the stack that is constructed to push the patient beyond what s/he can typically accomplish, so there is at least an initial stressor when inserting the stack into the mouth. Poor dentition can also interfere with this treatment, especially if there is a risk of breaking teeth.

A very important factor is that the stretching must be done SLOWLY, so as not to injure the muscle, which can be easy to do. The muscle can have a fairly rapid positive response to being passively stretched; however, it can also be injured easily if pushed too far too quickly.

Typically, with the Therabite I will have the patient (or caregiver) use the device to stretch the jaw muscle JUST to the point where a MILD stretch is felt. I will secure the device at this point to not open any further, and provide an exercise regimen that typically consists of stretches with a slow count to 7, 7 times in a row = 1 set, 3-4 sets per day. I instruct the family NOT to make ANY changes to the device settings until I see the patient again. Jaw muscle injuries are painful and take a long time to heal and I am very cautious about not causing them.

With the tongue blades, I attempt to create a stack that will also elicit the experience of a mild stretch for the patient, and then I tape them together securely. The best place for the stack in the mouth is on either side, along the upper and lower molars, to provide maximum distribution of pressure across the blades (again with the risk of breaking teeth in mind). I give the same exercise instructions.

For both approaches, the range of the jaw opening is slowly increased as the patient accommodates the device and feels no stretch when it's placed in the mouth.

Hope this makes sense and isn't too much information! Feel free to pm me for more info if you like.

Best,
Amy

On Mon, Jan 25, 2016 at 1:19 PM, Amy Roman <xxxxxx@sbcglobal.net> wrote:
Hi Listserv,
I know this isn't an AT question but we have a good number of SLPs/OTs and others on this listerv who specialize in working with people with ALS who I imagine will be best able to respond.  Please forgive my digression. 

Does anyone have any stretches, massages or other treatment  that they recommend to prevent or treat trismus (tightness of jaw muscle causing difficulty with opening mouth)?  I'd love any pictures, video links, descriptions, opinions, handouts, or thoughts.  I know we don't have a body of research on this topic to fall back on, but I have proceeded in my practice under the belief that we may help preserve the range of movement with gentle stretch and massage.  

I would love to know what others do or think about his.  Feel free to respond to me directly at xxxxxx@amyandpals.com but I think others may be interested in this topic too.  Trismus resulting in cheek, lip and tongue biting, teeth grinding, biting reflex interfering with oral hygiene, and exacerbated TMJ is a big issue for many people with ALS. 


Forbes Norris ALS Research and Treatment Center
2324 Sacramento Street
San Francisco, CA 94115
Cell (415)518-0592
Fax (415)600-3778



--
Amy Lustig, PhD, MPH, CCC-SLP
Restorative Speech & Swallow
419 Johnson Street, Suite 102
Jenkintown, PA  19046
215-460-1150
xxxxxx@gmail.com