Four Months Post Exchange - NOW I Need A Compression Bra? HELP!

Blessings2011

Hi, Sisters!

Short hx: dx'd in September 2011. BMX w/ SNB (3 nodes, all clear) and TEs in December 2011, Exchange to permanent saline implants in August 2012.

Immediately after exchange, I noticed that Lefty was quite a bit more swollen than Righty. The PS said it was excess fluid caused by all the pocket work he did at exchange (scar tissue removal, pectoral muscle release top and bottom, and lateral capsulorraphies on both sides) and that it would resolve on its own. (I didn't have drains at exchange.)

At each subsequent appointment,  I asked the same question and got the same answer... that it might take a few months to resolve.

I am now almost four months out, and for the past few weeks, have been having sort of a pinching feeling when I raise my left arm. I also noticed that the pectoral muscles in front of my left armpit are very tight, and there appears to be a vertical crease forming in Lefty.

Since the PS seems to be coming to the end of his expertise , I made an appt with the LE specialist at the hospital. I had seen her before, just after my BMX, for a minor cording issue that quickly resolved.

As soon as I took off my bra, she noticed that Lefty was significantly more swollen than Righty. She showed me how to do some manual drainage exercises (so lightly, not like I imagined!) and then she measured me for a Belisse bra and JoviPak post-lumpectomy insert for additional compression on the left side, especially in the upper pole.

She said she could't guarantee that it was LE, but it wouldn't hurt to try treating it as if it were. Funny, though, I have no swelling in my left arm or hand.

Any thoughts on this? Does it seem reasonable that I might be experiencing LE in such a small, defined area?

What can I expect with this Belisse bra and insert?

Would love to hear your thoughts!!!

p.s. She did think the pinching sensation and the creasing will probably resolve with relaxing the pectoral muscle. She said that deep tissue massage and stretching should relieve this problem soon. I'll see the PS again on January 29.

Binney4

Wow, Blessing, that's a real hodgepodge of information you've gotten!

Lymphedema in the breast, chest, side or back is called truncal lymphedema, and it can definitely be limited to a specific area, and very often doesn't involve the arm or hand. So that part is entirely in line with how lymphedema acts. All kinds of sensations are possible with truncal lymphedema as well, from "pinching" to tingling to aching to outright disabling pain.

But the treatment for truncal lymphedema is a variation of Complete Decongestive Therapy, which involves visits to a therapist for a couple of weeks for Manual Lymph Drainage (MLD), a gentle massage that moves the fluid out and reduces both the swelling and the heightened risk of infection that goes with it. In the process, the therapist teaches you to do the MLD yourself so you can maintain the benefits of the therapy. Unlike arm LE, truncal LE doesn't usually involve wrapping, but it does involve compression between therapy visits and after treatment ends, either from a compression bra or a cami or sport bra. The Bellisse is a very pricey item and difficult to fit, so unless your insurance is amazing you might want to ask about other options.

Here's information about truncal (breast/chest) lymphedema. At the bottom of the page are links to various other kinds of compression options you can consider:
http://www.stepup-speakout.org/breast_chest_trunckal_lymphedema.htm

If the woman you're seeing is not a fully-qualified lymphedema therapist, you might want to ask for a referral to someone who is. Here's how to find one near you:
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

Keep us posted, and tell us how we can help!
Binney

Blessings2011

Hi, Binney - thanks so much for your reply!

The PT I am seeing is LANA certified according to a framed certificate on her wall. She has been since 2005, and is the LE specialist and Senior PT at the hospital.

As for the MLD, I think that's what she was showing me yesterday. She gave me a handout (Lymphedema Home Program for Self Massage for Left Upper Extremity) with illustrations and instructions on how to do this very light massage...just brushing the skin, really....and actually placed my hands and showed me how little pressure to apply. She said to follow the instructions, and do it once or twice a day.

It was a challenge for me, as I'm used to doing trigger point therapy on muscles. This is just the opposite!

As for the Belisse bras, I will be getting two of them, along with the JoviPak inserts, at no cost to me. (Thanks, Kaiser!)

The PT measured me, and sent off the information to the vendor. (We don't have anyone local who sells them.) The vendor will pick out two or three sizes and send them to the PT, who will fit them on me and choose the best size. The rest will go back, and the vendor will send an additional set for backup. If there are any problems or issues, they can all go back.

I read in a forum somewhere that a woman found she could sleep in her Belisse bra, which gave her the freedom to wear her regular bra during the day under clothing.

Also, I understand there is a lymphedema-certified massage therapist in town, and I was thinking of giving her a call.

Is it better to have someone do this massage on you, or to do it yourself?

Thanks so much for the information...I have those sites bookmarked and will read them carefully tonight!