Hi all! Its been awhile since I have been on. I have been very busy basically trying to get back to a normal life. I will be starting work full time again next week and I flew back to PA to see all my family for a week. Anyways, here is my issue. My neck, jaw, and mouth are always so stiff and sore especially when I wake up in the morning. My left side neck and shoulder was sore and stiff prior to rads from the neck dissection but it has more than tripled since the radiation. Now the soreness and stiffness is on the righside and the back of my neck, my jaw is always sore like I have been clinching my teetch together for hours. I also cannot open my mouth that wide and can barely stick my tongue out. I am assuming this is the radiation forming scar tissue that is making me sore sore. I bring it up to the doctors and they basically shrug it off saying that I need to stretch and maybe get a massage. I take like 3 steaming hot showers a day to relieve the pressure. Does anybody else have these issues as well? Other then that I am doing fairly well! My taste isnt 100% but its 100% better then it was and I am finally able to eat pretty much what I want however some stuff loves to get caught and stay in my throat! I find a lot of things I just cannot tolerate anymore that I loved and somethings like mustard when it hits my tongue just explodes very weird. I still have a slight burning on the bottom left side of my tongue and mouth toward the back where I guess I still have some mucositis hanging around. I still cannot use regular toothpaste, the flavoring is still way too extreme so I am stuck paying $8 a tube for biotene that goes so fast when you brush your teeth 5 times a day now! lol, though I did get on ebay last week and this guy has 6 tubes of biotene sensitive for $13.99 shipped! So if anyone uses that take a look! Hope everyone is well.......well as good as expected! I am set to have another CT and PET in either Dec or Jan. I want to do it in Dec for INS purposes of course! Hate to start the new year off with a $2000 ded! lol!

Jim, I have that stiffness and it is worse in the mornings too. It makes it difficult to eat anything that isn't soupy. Just keep fighting and experiment with foods as you go. As for biotene tooth paste, I buy it at walmart for $5. 27 I think it is a tube. The mouth wash is $5.97 a bottle. It sure is nice to hear that you are back to being almost normal. LOL You are an inspiration to ones like me that seem to have halted any progress. Jim

Jim

I hope you are doing daily jaw stretching exercises - I opted for the Therabite device which I really needed this second time around. I had very similar stiffness this second time after the surgery and even more radiation so I was sent to two different therapists: one for my shoulder& neck and another for my jaw and mouth. The exercises & therapy really helped. I hear you about getting medical stuff done this year before the next deductible.
Best wishes and congratulations on returning to work.
Charm

Hi Jim. Glad to hear you are doing so well so soon after treatment. My husband just had an appointment this past Monday with his Oncologist and he brought up the issue with his jaws still being sore. He said it is from the radiation and also didn't seem concerned with it. The area that bothers him the most is right underneath his ears, both sides where the upper and lower jaw meet. Continued good health to you!

Thanks, ok well now that I know this is normal I will like everything else just learn to deal with it and take it one day at a time! Charm I do not do any regular exercises however I do stretch the hell out of it everyday about a million times trying to work out the stiffness...lol so I guess that is what you are talking about! Once I get back to work I will be talking and moving around all day so that should probably help with the stiffness! This past week I flew back to PA where I grew up and on the plane ride there I was thinking about all my favorite food that I cannot get in florida and became extremely upset that I wasnt going to be able to eat any of it.....WELL! I took care of that and powered it dont! lol, my wife is like are you seriously going to try and eat that....lol hell yea I am is it gonna hurt and be hard, yes, is it worth it....yes! Before I left I was told that I probably wouldnt be able to eat bread ever again by my ENT.....wrong! lol, I had a cheesesteak though I only ate half the roll! Had a chili cheese dog from my favorite spot though that chili def burned at the end! lol, had stomboli, dutch potato salad and amish macaroni salad, sweet lebanon bologna and cheese though couldnt dip it in the mustard and to top it all off I had 3 guiness on sunday as I watched my Eagles lose to the Raiders! I have to say it was a great weekend...oh and I went to the Penn St. homecoming game and it snowed 4 inches! Froze my you know what off but once again all worth it.....Thank God I brought extra Percocet!!!!! lol, I took that weekend and lived it like nothing ever happened and that is exactly what I needed and wanted to do! All my family and friends of course wanted to talk about it and I told them flat out dont even ask me about anything I am here to clear my mind and re-start my life! I will say they all said I looked better then I did 8 months ago when I got married! lol guess I really did need to drop a couple LBS! Gotta love family and friends!

Jim,

I think you are really doing amazing well, particularly with your eating.

For the tightness in the mouth and jaw, you might consider chewing gum. It was recommended and since I no longer have that problem it may have worked (I have quit chewing gum now).

Jim

Glad to see someone celebrating with delicious food. More power to you. I would still recommend specific jaw stretching exercises, even if nothing more than opening your mouth as wide as you can and holding it for thirty seconds, shifting the jaw to the right -hold 30 seconds, shift to left hold 30 seconds. Do that series 5 times in a row, 5 times a day. If you search the board, others have posted similar exercises. The reason I push this is that trismus is very sneaky and creeps up on you months after the radiation. You'd think regular yapping etc would do the trick but it really won't. I want you to be able to eat those mouthwatering foods in all the years to come but if the muscles scar up and become rigid, it's much harder.
Now all you need is a trip to Philly's Reading Terminal to get a real cheese steak.
charm

Jim
In rereading your culinary adventure, perhaps you don't need to be worrying about trismus right now. Easy easy test, take the middle three fingers of your non-dominant hand and if you can easily place all three fingers between your canine front teeth, you have the bottom end of a normal range of motion. Anything less though and you would be wise to do the exercises.
Charm

Jim, all I can say is good for you. If I had even one goos place in my mouth and some way to mash food, I would try this too. LOL My hero and I am jealous. Hell, soup is even too hard to eat anymore.

I am 5 months post treatment and I can just get 2 fingers in there. I think it got worse over the last couple of months, so I have been stretching my jaw as much as possible.