Would/does lymphedema work this way?

aunt_paula

Hi everyone--I thought I would update since I saw the lymphedema therapist today, and I was surprised by how the measurements turned out. I knew I could feel it in my left arm and hand, but didn't realize there was as much of a difference as there apparently is. In some pictures she took it didn't show much, but when she compared my arms out to my sides it was really easy to see. I really liked/felt comfortable with her, and she seemed very knowledgeable and very thorough, and I learned a lot. 

The plan is that I will see her weekly for the next six weeks and then we'll reassess where things are. She said that normally she would see someone five times a week initially to get the swelling down and get the compression garments, but I live two hours away, and there is no way I can do that, so she was very accommodating. Next time she's going to teach me how to do MLD and bandage my arm/neck/chest, then once the swelling is down I'll get my sleeves (she thinks it's worth wearing one on both arms, even though one doesn't seem to be swelling at this point--since I'm swelling on the side where nodes were not removed, she is concerned that I will end up with swelling on the SNB side if I don't) and glove and be fitted for a vest. I am feeling much better that things are underway. 

She did say that I will need to avoid extreme temperatures--in winter that's not a problem, since I'm inside most of the time, but how do you do that in summer? I live in the deep South--it's hot and humid if it's not winter!--and we are outside a good bit with late daylight, etc. She recommended not being outside for longer than 20-30 minutes if it's 95-ish or above, and that is sitting in a chair relaxing. How do you handle this and still get some outside time?

I know I'm forgetting a lot of what she said, but I wanted to update. I hope everyone is doing well.

Binney4

Hey, hey! It sounds like you've landed in a good place! So glad you're on your way to taking back control of your life!

Wrapping is usually arm and hand, rarely chest, never neck, but the MLD will be helpful for all those areas. Learning to wrap can be a challenge, but we're all here to cheer you on. Lots of options for breast/chest compression besides a fitted vest--check them out at the bottom of this page:

http://www.stepup-speakout.org/breast_chest_trunck…

Looking forward with you to the weeks ahead as you get on top of the stupid LE! Gentle hugs,
Binney

aunt_paula

I thought I'd update--I had my first OT treatment this morning. I ended up changing hospitals because the one I normally use is a couple of hours away, and that really wasn't feasible for traveling weekly, so I decided to try the local hospital and see how it went. It was really good, and though the OT was very up-front about the fact that she is not certified (there are none certified within 150-200 miles of me), she has experience and was very knowledgeable. She used a Hivamat (?) and did lymph drainage, and it felt so good (and reduced my hand and wrist measurements, though of course the upper arm measurements increased some) and taught me how to do MLD. The wrapping had not come in yet, but should be there Monday for my next appointment. I was amazed at the difference before the appointment in terms of my comfort; much less achy afterward, which I'll take! Monday she'll do treatment, then teach me wrapping. She will refer me back to the hospital/doctor that referred me when it's time for measuring for garments; she said that she did not want to run the risk of not doing it correctly since she doesn't do it all the time. She's considering going for certification, and I hope she will--we definitely need someone here. 

So, so far so good, and it's nice to have some progress!

Binney4

Thanks, Mods!
Binney