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9 Days in Mouth Excercise hints?

doitforoj's picture
doitforoj
Posts: 63
Joined: Sep 2009

Well guys I will have my 9th Rad today. First Chemo was last tuesday. Doing OK. Was hoping for a better week but doing ok. Pretty much already lost all taste for food. I have a appointment Monday for the speech therapist to do excercises. It hurts only when I open my mouth fully wide. Was wondering if anyone had some ideas for me to start doing now to get a jump on this.

Thxs
Kurt

white42876's picture
white42876
Posts: 20
Joined: Nov 2009

I think one of the important things to do is just swallow. I think water or gatorade is best because it will keep you hydrated. One of the things the nurses in the radiation area told my dad was to drink lots of water because it will just make you feel better! My dad starts radiation for tongue cancer on December 3. Please keep us posted on your progress!

Thinking positive!
Lisa

Landranger25's picture
Landranger25
Posts: 207
Joined: Nov 2009

Hi Kurt, was wondering how you were doing. Good to hear from you and glad you are doing OK. None of my Doc's really said anything regarding mouth exercises and I never had any contact with a speech therapist but I could feel the "stiffness" and ache in my jaw during my treatment. I would just try and open my mouth as far as I could everyday a whole bunch of times and work my lower jaw side to side and swivel it around. The only Doc who ever commented on my lack of range of motion was the surgeon who wanted to look down my throat and wasn't happy I could only open my mouth about 1/2 way. I still exercise my jaw this way even 5 weeks out. Understand your loss of desire for food. Keep drinking if you can. Keep that swallow reflex working and stay hydrated. I counted my rads as well. Hang in there. Every rad down is one less you have to do. Try to stay strong for those chemos. Congrats on one down. I found with the chemo that the week immeadiatly following was not the greatest but by week two I felt better. Keep grinding your way out of bed everyday and get this done. Don't be afraid to use your PEG. Water, food, whatever you can get in there. You need to stay physically strong as well as mental. Wish I could help more.

Mike

ratface's picture
ratface
Posts: 1232
Joined: Aug 2009

Hi Kurt

I have a list of jaw exercises they gave me. I scanned it and tried forever to get it in this message. Could not figure it out. I sent you my email and will just send them to you as an attachment.

Go to your PM's and drop me a line.

Rick

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

I'm not sure how much of it is from surgery and how much from radiation, but I developed scar tissue that impeded (and impedes) the range of motion of my mouth. Eventually, this leads to something called trismus that needs to be attended to, and I applaud your doctor for being pro-active in this regard. As others have noted, many do not, for some reason, think of this distinct possibility.

In my case, I was referred to both a speech therapist AND a physical therapist who specializes to some degree in working with folks such as us. In my case, the PT was of far greater value to me than the speech therapist.

For what it is worth, when we got together the first time, like you in the midst of treatment (and in my case almost immediately after leaving the hospital two weeks after the surgery), I do not believe I was best prepared to take advantage of the assistance. I am seeing the PT again, now, with greater awareness of the value.

Among the things we did and do:

Application of warm, moist towels around the neck and jaw area for maybe 15 minutes per session

Exercises to project the lower jaw FORWARD; when done without her help, I simply do as suggested, extending my lower teeth outward, but so that I can feel the lower jaw extending forward too. Hold for 30 seconds or until it becomes too uncomfortable

Extend the lower jaw to the RIGHT as far as possible and hold for 30 seconds

Extend the lower jaw to the LEFT as far as possible and hold for 30 seconds

Open the mouth, as someone has suggested, as wide open as you can, and hold for 30 seconds

Repeat these three times daily which is fairly easy to do when you are at home, but not so easy maybe at the office :)

My PT does some additional things that I cannot do myself, such as getting her fingers inside my mouth and massaging my muscles, pulling my jaw down or side to side, that sort of thing, and massaging my neck and jaw muscles.

You can also use popsicle sticks to sort of pry your mouth open, a cheap man's version of something called a Therabyte that is not so cheap and I would not recommend unless you anticipate a longer duration of time with the problem. I have one, and it works great, but I think the little thing costs over $400 while the popsicle sticks do pretty much the same job.

One thing that I have been instructed about is a tendency on my part, due to the trismus issue, to talk through my teeth rather than opening my mouth. When my mouth is open I am MUCH easier to understand, and had not realized on my own that I had fallen into that teeth gritting habit.

Hope this helps.

Take care,

Joe

doitforoj's picture
doitforoj
Posts: 63
Joined: Sep 2009

Thanks again guys for your advice and support. Seems like all I do on here is ask a question and then say a lot of thanks. LOL. Doing well feeling much better today. Food tastes horrible so not eating but 3 shakes a day. (throat does not hurt yet to swallow) and 2 shakes by tube. LOTS of water. Again thanks for the help.

Kurt

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