How long did it take for your mouth to stop hurting after radiation? I guess a better question, did it start feeling better after radiation? Also, do you now have your "permament" obturator? I have six more treatments. I am hoping for some relief.

Ditto on the mouth-opening exercises!!! I am way ahead of you two, and I do them many times each day, no longer with the Thera-bite, but my opening my jaw as wide as possible and sometimes helping add a bit of stretch by hand. XOXO

Colleen - You mean you are still doing stretching exercises several years into this? Does it continue to get better. I feel like I am at a stand still, can't make much progress. I think it would be easier to do if I was not in so much pain. Can you actually eat a sandwhich?

Wheels, it's different for everyone but for sure I still hurt after a little over 2 years out. In fact it is worse these last few days than it was then. But i think I have to balme my ENT for that. I think he tried to put my lower jaw and gums in another location. That young guy can put a hurtin on ya. LOL I wish you much better luck with this pain.

Stretching...My dr. almost forgot to mention exercises to me, and it still scares me to think of that. I did use the therabite religiously, and now I just try to remember to stretch as wide as I can as often as I remember. I don't think I would scar down if I didn't do this, but I feel like I'm a little tight if I don't do it for a while, and it's easy to do.....while driving, watching tv, etc.

How many teeth did you lose in this process? I lost 5 (would have been 6 if I had had my wisdom tooth on that side.) I still have my four incisors, and yes, I can and do eat sandwiches...anything I want. I am very fortunate....and more than a little chubby because of this ability!! I have some friends who find that they need to cut their sandwiches into bites, but I don't have to do that. I don't find the fake teeth in the obturator to be useful for much, so I do all of my chewing on my natural side. A dentist friend told me once that most people are one-sided chewers anyway. Sometimes, I try using the fake teeth for something soft, just to give the taste buds on that side a little exercise.
Tell me what you are dealing with, tooth-wise, and I'll have a better idea how to compare our situations.
Chris...you too....XOXO

[quote=wheels]How long did it take for your mouth to stop hurting after radiation? I guess a better question, did it start feeling better after radiation? Also, do you now have your "permament" obturator? I have six more treatments. I am hoping for some relief. [/quote]

Sharon - My mouth DID start feeling better about three or four weeks after radiation ended (it seemed like forever). It got worse for the weeks just after I stopped the radiation, and I had to increase my pain meds then. Finally, over the next few weeks, the pain subsided, and now, at seven weeks post-radiation, I am off the meds and pain-free. (I hope you could follow that!) In a nutshell, it gets worse after radiation, and then it gets better, but for me it took much longer than I had thought it would. Take your meds and know that the pain will end.

I still have my temporary obturator -- my prosthodontist isn't planning to give me a permanent one until my mouth is completely healed and not at all swollen (I'm betting a few more months from now). Is your temporary one doing the job for you? How's eating and talking? How's swallowing? Are you doing okay with the removing and putting back in, cleaning your mouth, etc.?

Good luck with your last few radiation treatments -- congratulations for getting through it!!! I will be thinking about you in the coming days and weeks -- don't be afraid to write with more questions as they come up! And hang in there if it gets tough -- this, too, will pass.

I forgot to say, about stretching exercises...I think we have to do them for the rest of our lives (roll of eyeballs). Yup. At least that's what it suggests in the literature I've read. It sounds, Colleen, like you do a modified version at this point -- I'm looking forward to that. I'm still doing it as many times a day, as many reps per set, as possible -- usually four or fives sets a day, 10-20 reps per set. Tedious, but pretty much every time I sit down I do it. In the car, too, just stretching hard with my mouth (hands on the wheel!).

Sharon, don't worry too much about being super-woman with the stretching when you are in a lot of pain; just do the best you can. When you are feeling better, you can push a little and see if you can increase your stretch (just a tiny bit each day, maybe), but that's a ways down the road for you if you are just finishing radiation. The post-radiation stage is enough to take all your energy, so devote it to taking care of yourself, managing your pain, sleeping, watching silly tv, etc. This is a time to baby yourself.

Take care -

I think I am doing pretty well with the temporary obturator. At first it was difficult talking and I felt like I had a strong gag reflex, and of course learning how to hold my head when drinking. After about four weeks (I went back to work) and felt like I was talking okay and had a routine down with cleaning, brushing and rinsing. I just made me up a little bag and carry it with me wherever I go. I still am uncertain about the eating out routine. It may be useful to chat on what others experiences have been (LOL), I will save that for another time.

Taking it out and putting it back in is not a problem, once I started doing the stretching exercies. Prior to that it was beginning to scare me! I really appreciate both of your encouragement on the exercises. I find after be reminded from you both I have a little more motivation. It is easier to comply when being told by someone who has walked in your shoes then from someone who has no idea.

Three radiaton treatments to go, the Dr. seems to think the pain will begin to lessen in two to four weeks??

It's hard to know how the pain will be and how long it will last...It varies so much from person to person! In my own case, my doctor was off by a couple of weeks, and I ended up feeling very disappointed that I wasn't healing "in time." (Your doctor sounds more realistic than mine.) So just go with the flow the best you can, and know that the pain will come to an end. And don't be afraid to ask for pain meds for as long as you need them.

I'm glad you're doing so well with your obturator!

Good luck with your last three treatments -- you're almost done!

Sharon, since I (fortunately!) didn't have to have radiation, I don't know what to suggest about the stretching. You need to ask your dr. But I have a friend with similar surgery...and radiation....who was not told to stretch, and now her jaw is so restricted that she can barely remove her obturator. She had surgery to loosen it, and again didn't know what to do about the stretching, and it scarred down again. She is quite miserable....so do ask....and don't wait long to do so! I realize that the tissues are perhaps fragile at this point....I don't know....so ask!! You sound like you are doing well.....It's quite interesting to me that three of "us" found each other. There haven't been many maxillectomy/palatectomy patients here. XOX