Still Unsure if its Lymphedema

Please get a referral to see a qualified Lympedema physical therapist to determine if you have it.

Hi!  I just finished my #10 visit to a LANA certified therapist for LE... actually 2 of them.  From what I've read and asked them, the diagnosis for LE is if there is measureable swelling.  I had to request my dr. to send me to them.  After 10 sessions, I have noticed a reduction in swelling in my hand, but not so much in my arm or chest.  It kind of goes up and down in my chest, but never goes away.

So after asking each therapist specific questions, this is what the conclusion seems to be:  there is a chance my LE will never disappear and that the goal of the massages and exercises and sleeve and glove are to keep the LE from worsening.  That is the main goal of all that.  LE will be there, but it's a matter of control. 

One therapist who has been doing this for 16 years told me that while the swelling may reduce, it's rare that it will disappear completely.  You will always have LE, but you may have less swelling or less pain (which was a big goal for me as I was in quite a bit of pain), but it is up to you (and me!) to do what we can to manage it and keep it under control.

After my therapy sessions end next week, I was told that if things get bad or out of control, that I should get another prescription and come see them again.

It's a bit depressing, isn't it?   Other things health-related can usually be "fixed".  But LE is one that can't be fixed. 

Hope that helps.  There is a lot of info online about lymphedema.  I should have known more about it because I waited until 5 years from my mastectomy to even recognize what I had.  If I had started earlier after that, I wonder if it would have made a difference.

Hang in there.  Feel free to "sound off" with me... maybe we can help each other get through this!

Thinkingpositive, you might try a paint roller to help reach your back area. Look around for different sizes of the roller part, as there are some small ones for trim work that have long-ish handles. Or, I sometimes use a foam roller, like this: foam roller , placing it against the wall and leaning into it as I move my torso up and down. This one has notches in it, but they're available with a smoother surface, and in various degrees of firmness. If you're not shy, a trip to the sporting goods store would allow you to perhaps try one against a wall there, although I'm not sure if you'll find one that's not stuck in a package you can't open.

I agree to see a therapist that specializes in lymphedema to get a qualified opinion. I went to one, did 12 therapy appointments several times when it got bad and my arm really swelled (all surgery involved). If you have it, then it will be a lifetime thing that will have to be managed. I am almost 5 years out, I have cording but I will say it is less. I did what my therapist said and massaged my scar tissue in that area, she suggested for the first 2 years spend 5 mins a day massaging by pushing and pulling the area so it would not form more scar tissue so I am not sure if that is what worked or if time is what helped. I found for me, what helps is a low salt diet and being active. If I don't move that arm around a lot, it will start to fill with lymph and become uncomfortable and swell. The other thing that helps me is a dry brush my body right before I jump in the shower every morning. I do it with the same pattern they showed me how to do a manual lymph drainage massage but all over. Otherwise, I have learned to manage it. I wear my sleve when I get on an airplane since elevation will always get me. Best of luck!

Anna

Thinkingpositive, I got cording too, went through 6 months of PT and no, it didn't resolve. It helped me with range of motion, that's better but not 100% (good enough, though) but the cording remains. They just shrug and say oh well, nothing more we can do. Keep stretching every day and it may go awayeventually. I will say it's not as bad as it was, but if it keeps going at that rate, it will be 20 years before it's gone.