I saw the physiotherapist today. She measured my arms every 20cm up the arm starting 40cm from the tip of my longest finger to see whether and how much lymphedema was there: anything more than 2cm on the arm is considered a significant amount. Also, the dominant hand and arm are generally larger than the non-dominant side. I think when I had it before there was only about 1cm of swelling.
I'm right-handed and the left hand and arm have the lymphedema. My lower forearm, upper forearm, ower bicep, and upper bicep are 1.5cm, 2.0cm, and 1.5cm, and 1.0cm larger than the right side. My left hand is 0.5cm larger than the right hand which is significant for it being a non-dominant hand. So I have lymphedema and it's a significant amount.
She explained that between the muscle or fat and skin is a space that fills with fluid via the arteries and capillaries due to the pumping of the heart. There are lymphatic vessels in that space that collect that fluid, after which it's sent back through lymph nodes to filter out waste products. The whole system is divided into four quadrants: right and left sides of the body and above and below the waist.
In my case, the fluid is blocked in most of the upper left quadrant due to a combination of factors. There are the lymph nodes that were taken out in my underarm when I had the primary cancer, and then the are the mediastinal lymph nodes that were taken out when we found out I had sarcoidosis, and then there's the area that was irradiated as part of my primary treatment, and then there's the morphea which has tightened the skin. All of that together means that the lymph channels are damaged or blocked and the skin is also damaged and tight so the fluid doesn't move.
Because that whole quadrant is blocked, normally we'd just move the fluid over to the other side. However, the missing mediastinal nodes make that difficult as there aren't as many channels available. So instead we have to move the fluid to the lower left quadrant which is a bit more difficult.
She did some lymphatic massage on me which basically pushes the fluid under the skin around and it definitely felt better afterwards. This kind of massage is very different from muscle massage; she described it as standing in a pool and making ripples that go to the other end of the pool. It's very slow and steady and relaxing. She's given me exercises to do at home that are supposed to stimulate the lymph system and fluid flow that are also supposed to be done in a slow, smooth, relaxing way.
I'll be seeing her on Monday and Thursday and during those visits we're going to continue with lymphatic massage while I do the exercises at home. She wants to see how things go this way - apparently it's important to not to try to force the fluid to move too fast or it can bound back. Then on the following Monday I think she's going to try to bandage up the arm with the foam bandage stuff and that stretchy bandage stuff that sticks to itself. It'll stay on for four days.
She said that the sleeve and gauntlet that I had before definitely wouldn't work since things were so different and that I will be needing a new set. She wants to wait to see how things are doing before we order the garments to make sure that I get the right kind with the right kind of compression in the right places. When I do get the garments, apparently provincial insurance will cover 75% of the cost if I have a thing that says that I need to wear it every day for six months. She'll give me the thing that says that because it'll be true.
We also talked about my upcoming trip to Philadelphia April 13 and 14. She said that I'll definitely need to wear compression garments when I fly from now on. However, she's not sure that it'll be time to order the compression garments before I go. She might be able to bandage the arm because it gets left there for four days and that's long enough for the trip. Another option could be for me to take the train there.
So... that's it, I think.