Suzy,
I am so sorry I didn't see this post sooner. I'm not sure that I have any real answer for you, but I do believe a suggestion could help.
My mom, Rose, has lymphedema in her neck from a partial neck dissection, left side. She did NOT receive lymphedema treatment right away and when she finally did it had really progressed. Her neck at the time felt like that of a tree branch, hard as wood. She also felt it occuring and seeked treatment. In the beginning she went to the CCC where she was treated for everything; the therapists there were not able to help her as much as we had hoped. We looked into local therapists, there are not many who specialize in lymphedema treatment, at least none that we found who weren't sitting with a book open in front of them trying to apply this treatment. She was finally getting some decent help but then they said they felt maybe she should try some new methods not yet tried locally. It wasn't good. After about 3 months or more, I happened to open up to a lady I worked with about Mom's ongoing issues. She gave me the number of her lymph therapist (she had breast cancer) and I called right away. I scheduled an appointment for her and she has been going to her since. The therapist believes that once there is lymph node involvement you should seek treatment as soon as your surgeon/onc allows. My moms nd was on the left side, by the time we met Kim, the therapist, it was all the way across her neck. My mom was extremely uncomfortable and becoming less able to lift her head and turn her neck as she should have been able. Within one treatment we saw hope. You should see how pliable her skin and muscle is now. I call Kim the Miracle Worker. She is very passionate about what she does. I do believe she may be the person who might be able to advise you. She is in PA, but she has many contacts, and if my memory serves me correctly I think someone not far from where you are. Unfortunately it iate here and my mom is away on vacation with my dad (hooray! Felt well enough to drive all the way to GA) and is not available this week. I'm sure she would be happy to share her experience with you. If you would like to speak with her therapist, I am certain she could aim you in the right direction, email or PM me and I will forward you her info.
Do NOT give up hope! I believe there is someone who will be able to help you.
I'll be thinking of you, and praying too of course.
Donna