Well I've said sort of the same thing about getting PT, acupuncture, and lymphedema therapy. I think docs just want you cured, sure we all want that, and it is most important. So then you better ask someone else about quality of life issues.
I was told by my RO that the most important year to do the various exercises we were given was the first year. Ok, so I was not as good as Cheryl was during treatment getting to that. I have been faithful with it since that time. I have my neck stiffness issues. It was pointed out to me when I was getting lymphedema therapy pointers last week that I need to make sure when I do the exercises that I use the muscles correctly, that is not "help out" with my shoulder, even just a little bit, when bending my neck down towards it. Also relaxed and slower is better on them, so no just getting through it to say I did them!
Lymphedema. I don't have tons of it, but my neck is thin, and some people don't realize that it is swollen I guess. Anyway, it is difficult to find therapists that are fully qualified in head and neck. I was seeing a therapist who had the class work, but really not the experience. When I saw someone who did have the experience last week at MD Anderson, I learned (and unlearned) a lot. According to all parties, moving the lymphatic fluid helps a lot with circulation and that will reduce fibrosis. BUT you have to be careful you are moving it the right way, and not using too much pressure or you can create scar tissue. In one week of doing my routine according to their suggestions, I have noticed a difference.
I also have fibrotic areas that I was told would benefit from physical therapy myofascial release. It is actually a form of the classical myofascial release designed for radiation patients. Finding someone qualified there who has experience with head and neck patients at least in my state might not be so easy. I may wait until my regular check up in the fall to do that. The lymphedema therapists were also speech therapists, so that is out of their area.
So I read with interest about Emmett's physical therapists helping him.
As to acupuncture, I know I want to find someone with the right qualifications and experience. Cheryl, it is great that it helped you.
Yes, scar tissue hurts, and yes, it shows up on scans, and then it has to have clinical interpretation or even biopsy. The PA to my ENT oncologist told me that the lymphedema massage, the exercise, and even my weight lifting that I've started will provide benefits to me in the future. So I'm hopeful . . . as I have tried to be all along this road.
Best to all,
Anne
