I would definitely recommend PT for the stiff neck problems and lymphedema. Mine started each session with a nice moist heat wrap for 20 minutes and then gentle massage followed by stretching of my muscles and arms to get better movement. Each session was closed with a 5 minute back massage. See if you can find a PT that deals with head an neck issues. Maybe your RO can recommend one. PT is usually covered by insurance. Regular massages usually are not.

Take care,
Eileen

Eileen, I finally got authorization for PT and I am going to do it because according to my ENT and EZJim it does not get better, only worse. That is just so hard to comprehend with this dang disease. I'm so used to being a fast healer. I broke my shoulder three years ago and was back to work in a week after surgery. I was in pain but I could still type and I could take the pain as I knew it would get better in time. But to ask the ENT when my mouth is going to feel better and have him say, don't look foward to it. It will probably just get worse. That just floored me. I sure didn't want to hear that. I need to get a little different attitude towards food and quit trying to be a wonderwoman and think I should be able to eat anything by now. It's been four months or so since radiation ended. I guess I don't have much patience. And my family doesn't understand anything about radiation to the mouth. They just liken it to the radiation two of them have had to their breast and don't see why I have side effects since they didn't have any except burning. Of course their radiation was also only about 30 seconds compared to our 20 minute zapping.

I too have a tingling in my tongue and according to my ENT a lot of scar tissue which is painful. I am still using my painpatch and afraid to come down anymore, because I do not want to feel any of the pain. My ENT did tell me it may not get much better than now, but it is not going to get much worse either. I hope he is right. The wonderful gift of radiation. I also try to look at it in this way: I am cancer free and knowing that the pain is not from cancer but just the side effects I can live with that.

I do everything I have been told to do for the burning tongue including brushing it 2 times a day, but it continues to burn away as it wants to,. For my neck, in the morning I get the shower as hot as possible and allow the shower to do a massage on my neck an shoulders for a few minutes. I turn my body slowly in a circle and make sure my neck and that area are completely massaged by the heat. It helps for a couple of hours. Maybe not good, but for me it works.

Glad to hear you got script for PT and hope you find a good one. Did the doc give you any recommendations? Ask the PT to start with moist heat for 10 to 20 minutes. It helps so much.

As to eating, you need to stay away from the spicy stuff. If your tongue is still burning, has you been checked for thrush? What are you doing for teeth? Can you chew?

If it now summer and all those nice veggies and fruits will available. Try some of them- have some fresh blueberries or strawberries in heavy cream or yogurt or on pancakes. I could eat tomatoes but some find the them too acidy early on. Keep sampling stuff. Just because it didn't work this week dosn't mean it will or won't next week.

Take care,
Eileen

After a year, fresh hot peppers and some salsa still causes burning in my tongue. It was a good 6 months before it did not burn all the time.
This seems to be the slowest part of healing, but it is still improving. I can however eat hot sause like it was catsup, so it can get better. Be patient.

Ditto on the PT! They started me out on the moist heat also and it felt so good. She did say the longer you wait, the harder it will be. I think it took several weeks and then that was enough. Everyone I talked to after PT said they noticed the difference. I just held myself differently.

I wake up with my neck feeling tight, but just do my stretches and I'm good.