early stages of LE

jenjenl

I had a UMX with 15 nodes removed on 11/12, so it will be 3 wks post op on Monday.  My BS recommends PT for me at this time.  I can not lift my arm higher then shoulder height.  It's like the muscle in my right armpit is an elastic band and just can't go higher.  The back of my right arm is tingly.  Sensative under my armpit and shoulder blade hurts some towards the end of the night.  The area around my insicion is still numb and the end of the incision past the armpit is a little swollen.

This just doesn't make me feel better.

I put a heating pad on my shoulder...not sure if heat is a good idea.

Binney4

Hi, Jenjen,
I'm sorry you're struggling with all this! Good for your BS for being proactive about getting help. The best kind of PT help would be from a qualified lymphedema therapist, who could evaluate all you're going through and sort it out for you, as well as deal with any post-surgery issues. Here's how to find one near you:
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

The "elastic band" description sounds like cording (Axillary Web Syndrome) might be part of what you're dealing with. Here's information about it:
http://www.stepup-speakout.org/Cording_and_Axillary_Web_Syndrome.htm

You're going to get this squared away, Jenjen, so hang in there! Please let us know how we can help! Gentle hugs,
Binney

Momine

Jen, don't despair, but do get yourself to a good LE therapist pronto. A year ago I was about where you are. That tingling is lymph fluid, most likely. Even now (when my arm is back to normal) that tingling is my cue to wear my sleeve.

So, my BMX was a little over a year ago. At this point I feel well the vast majority of the time. I have sleeves for the arm, but do not have to wear them 24/7. I work out regularly (with the sleeve on) and am able to do most of the things I did before, with a few adjustments. The cording has completely cleared up and my mobility is close to 100%. The only thing that sometimes doesn't work smoothly is that move where you cross your arms in front of your body to pull a sweater off over your head. I can do it, but not always in one move.

I should also say that my swelling started in the armpit/trunk area. It took me a while to realize that the bra band was a very bad idea and was causing the fluid to back up in a fist-sized bulge above the bra band towards my back. So, I stopped wearing bras. Instead I use various cami options. 

jenjenl

Thanks for the feedback. Should I still continue with daily post op exercises until I see the LE PT?  Meaning circles, climbing up the wall, etc.  Or should I not push it to hard and let the pro's do it?

cowpower

Hi Jenjen, I just started with my LE Therapists on Tues, so your post caught my eye. I would have hooked up with them months ago if I knew how great they were. I had actual visible swelling in my upper arm so I am wrapped in compression bandages for a couple weeks. They suggested I do continue with exercises as they monitor progress in moving the lymph. I go 2x per week. At my Thurs appt, the size of my arm was already halfway back to matching my other arm. The best thing about them is they look at BC as a whole, not just LE. They told me they woud teach me subtle signs to look for in other areas, like possible shoulder damage from rads, continued tendon tightness from surgery and chemo, etc. I have already increased range of motion I didn't even know I had lost! I still hate the bandages, though :)p>

Momine

Jen I think the post-op exercises should be ok.

purple32

jen

I am  a newbie here , but you may want to avoid the heat as good i as it can feel.

Others will jump in if I am wrong.

Good Luck to you !

jenjenl

thanks purple...i had read another thread about the heat that made me question it.  It feels so much better with it.  Is swimming good for LE? 

carol57

jenjeni,

At three week post-op, there's a lot going on in the healing department! Binney's suggestion to try to get a referral to a PT who is also a certified lymphedema therapist is a wonderful idea.  Most CLTs are also PTs, so you would get double benefit from an evaluation: look for early signs of LE, and receive guidance on the best PT program for helping with your shoulder/arm mobility issues in a way that is also helpful for reducing lymphedema risk.

At three weeks post-op from a mastectomy, I think your arm-raise limitations are entirely normal.  And I am delighted to hear that your surgeon waited a few weeks after surgery before instructing you to start the wall walking or other stretches!  Because...studies have shown that stretching and other shoulder mobility and range of motion exercises begun after surgery can reduce our lymphedema risk, BUT only if we wait at least 7-10 days after surgery before starting them.  Several studies have found LE benefits of these exercises, but one very well designed study found that beginning the exercises within 7 days post-surgery raises the lymphedema risk 2.7 times, compared to waiting that week or so. The best-practice advice for those at risk of LE is to avoid raising the arms above shoulder level for ten days post surgery.

So:  It's probably ok to continue your stretches, but it would be best to confirm that, and to have your tingling checked out, by a PT/CLT.  That person will also be able to tell you if the tightness you feel is cording, which is often associated with LE, or if it's just the normal inability to reach after mastectomy.

Oh, forgot to say:  Swimming is great for LE, because water pressure provides compression. But keep in mind that to benefit from water pressure, your arm/shoulder need to be in the water.  So, breast stroke is better than the crawl/freestyle stroke, and even better would be some submerged-to-the-chin time, when you are slowly moving your arms against the water resistance.  I'd avoid the kind of repetitive motion that actual swimming brings to an arm, until you have had an evaluation by the PT/CLT.

Keep us posted on what you learn!

Carol