I have been holding my own despite dry mouth issues and the constant need for a water bottle. I continue to try just about anything nutrition wise however I am having some issues with getting weight back on. The doctors want to see me with more padding next time we meet in Sept.
Curious to hear from anyone who could speak to the aftermath of radiation over the long haul. I have a lot of stiffness in my neck especially in the morning. I stretch and do my mouth/tongue exercises. Does this improve? Is it a roller coaster ride of ups and downs because I was not noticing this at all previously? I also find I feel swollen at times but it is usually in the morning and it doesn't last through the day, in fact it is usually gone by the time breakfast is over. Not sure if this is something anyone out there can speak to but I think there is at least "1" someone out there who knows what I am talking about.

Find a good physio therapist - seriously - a combination of exercises provided by my PT, and acupuncture, and lymphatic massage ( to prevent lymphedema) - lymohedema ould account for he swelling. have all helped me - my neck is soft - and working a about 90 % - my arm too. I had 33 rads and a neck dissection. I'm a month behind you. All of this activity helps to minimize fibrosis if done within the first year. Take care!!

I so appreciate your reply. Where did you start to find the physio therapist. I have little to go on here. I haven't had anyone mention this as a possible option. I have heard from a nurse the possibility of acupuncture being a help for the lack of saliva and to stimulate them. I have definite swelling in the morning and then it dissipates. I will investigate. Thank you, thank you Cheryl! You are on top of it!

Hi,
You communicated with me, I think, before you started treatment. I know you were at Fox Chase. Jerry told me he had lymphedema treatment there. I would start there. Your lymphedema therapist may be a PT, OT, or Speech Therapist. If they are a PT/OT they can help you with those issues. There's not a lot of head and neck specialized lymphedema therapists around, so you might not have a choice in the matter. As a music teacher who has to sing on the job, and has to get ready for fall, I was glad to get pointers with speech therapy too.

Lymphedema therapy is great, I recommend it. Important to go to someone who sees head & neck, I've found. I found a PT who says she sees head & neck patients & will have an appointment in August for fibrosis issues. I can always make an appointment when I go back to MD Anderson with one of their PTs to check on me. The lymphedema therapist at MD Anderson was a speech path. who told me to try to get with a PT about the other fibrosis not related to lymphedema. I was told treating these now the correct way will help minimize radiation fibrosis because it will improve circulation. It will make you feel better I think. My lymphedema and my fibrosis were not really bad, but everyone told me, "good you are doing this now." And of course time helps as well.

You could ask Jerry who he saw or ask your doctor at Fox Chase.
Best,
Anne

Thanks for the advice. I never thought of Jerry as having this issue since he did not have radiation but after some more careful research and reading I can now understand the possible causes much better.
I have contacted Fox Chase this morning. The radiation oncology nurse said I could do something now but it is not something I have to act on immediately. She said it was more about body image and not so much of a medical issue. I have a choice to ask to come in and see the doctor and then they may recommend PT or not.
I think I will take your advice as well as Cheryl and pursue the PT and massage. I will speak with Jerry also because he may have gone to someone outside of Fox Chase.
Glad to hear from you. I have not been as steady with posts, etc. Hopefully I can get to visiting more regularly. It certainly makes me want to help although I never really know what help to give. I feel I have benefited from all of you!

I just have to disagree that it is only body image--sure if it is extreme. Those are the people that usually go in, and it is most often extremities, not head and neck.

I have noticed that the feeling in my neck has started to return, since I've started the massage. I was not expecting that. Of course, who can prove the connection, but I was not expecting it this soon. I mean all over my neck. Not a great feeling (painful) but a start. You have to massage very lightly so I do the massage in a way that I won't feel pain, but if I touch my neck otherwise I am getting sensation some places and pins & needles in places I did not have it before. They showed me how to massage my tongue because it felt so fat to me, and I started to get saliva after one of the massages. Furthermore, they do measurements on my face and neck and mine improved. Actually the measurements improved on both the surgery/radiated side and the non-surgery/radiated side. I do realize you did not have surgery.

When I inquired about it at MD Anderson, the doctor's office did not seem to think I needed it, but when I happened to visit with the lymphedema therapist, he said, "looks like you could use some help."
So--it's a matter of perspective. If you're into saving lives you naturally think of that first and quality of life does not come into the picture immediately.

Anyway, my doctor (ENT) gave me the referral. If you have swelling, yes it could leave you anyway eventually, but learning the massage is great and then you can always use it on your own once you know what you are doing. The deal is, this will improve circulation. So yes, ask Jerry.
Anne

NonaChris - have you been able ride again yet? I think that the exercise of riding/grooming has been helping my husband's lymphodema to reduce. I think he is about a month ahead of you in recovery - last rad was 3/18.

Ron's face is always swollen in the morning when he wakes up. It's from the lymphnodes being removed. Fluid builds up more on the side he slept on. It did go away. Now he is just 2 1/2 wks out from his second operation so his face is still swollen, bad on the one side where he had radiation, they say it will take him a bit longer to heal on that side. Good Luck!

Here is what a lymphedema therapist told me when I apologized for mine being "minor": "If you have surgery it is minor; when I have it, it is definitely not minor." The other thing I have is a thin neck. I thought about keeping it to myself how skinny it was because people already thought it was skinny and it is swollen. Now you can see my carotid again. I think it is better for me that the swelling is going down, but actually having a less skinny neck would look better! How's that for body image issues . . . I don't weigh much either, never have, but I guarantee that if I gained weight it would not go to my neck first.

Up to you, but as I said once you learn it you can always use the technique. I thought Jerry said they automatically referred him & that would have been the ENT.
Anne

Hi sorry I was away for a few days - back now - I agree with Anne - I don't think swelling is a minor issue. Fluids just sitting there, can hurt, and cause other issues - if you can get the lymphedema to subside it's great, same with physio... It a use it or lose it thing. Working at getting your arm strength and neck back is very important. my surgeon said he highly recommends it.