I finally found an LE therapist....

cinnamonsmiles

I saw an occupational therapist who supposedly knew how to treat LE last summer for severe scar adhesions on my chest and severe PMPS from my BMX w/ node dissection. I had 2 different ot's  that were wonderful for the scars and pmps. I kept complaining about feeling swollen,achey,a feeling like I had wide rubber bands on the back of my upper arms and chest side to the one in charge of my case. She would take arm measurements but do nothing. My last day of OT, she finally heard me about LE symptoms and gave me maybe 5 minutes of instructions of how to massage my arm and dismissed me.

I have been lurking around the LE section on breastcancer.org. I found that there were no certified LE therapists near me (closest was almost 3 hours away). I have been telling my family dr.,my pain dr and nurses about LE symptoms (my breast surgeon moved away and I don't have an oncologist).

Well, this summer my lower spine was hurting so bad I could hardly move, so I started PT for that. I got curious about the others that worked there and was reading all their info cards. I stumbled upon a woman who is part of the pilot program for cancer rehab for those that had or have cancer and need PT/OT for whatever AND it includes an individual exercise program. I was talking to my back PT about it and low and behold....that lady knows LE and how to treat it.

At my last family dr. appt she wrote me a prescription for the Cancer Stepping Stones and LE. The LE therapist happened to be at the front desk when I was making my first appt (the PT dept I am using is below my family dr). She took one look at me and could see I was swollen in the arm and the side truncal area.

Yesterday was my first appt. and yup, I have LE. She did massaging on my chest and arms. I started using the pump, too for 30 minutes. She doesn't have any sleeves in my size, so she is ordering one for me. I am so relieved to finally have found someone but not happy to have LE as well as my severe PMPS>

So in addition to the severe PMPS, I officially have LE that I have known I have had for a year. I also consider myself very lucky that it stayed a mild case and didn't turn severe.

So I now joined the Mild LE club....

I don't totally trust her because she was rushed and it was I that had to bring up the compression sleve so I am going to report back to you all my treatments to make sure I am getting the best care. I hope you will help me out if something doesn't seem right....

Thank you all for being here. I would not know all I know without you all! 

Binney4

Cinnamon, I'm so sorry! But on the other hand, I'm glad (even relieved!) that you're finally on the road to getting it under control. Yes!

The pump is not standard care, but an addition some gals use when the self-massage (it's actually called Manual Lymph Drainage, or MLD) is too hard for them to do regularly. Some therapists use it as a shortcut for hands-on full MLD. (They are sometimes working against time with a big back-log of patients and a supervisor who wants them to see more patients than they can reasonably see.) Especially as you're just starting out, you might want to ask her to do only the hands-on, and to take her time and do the entire routine. She should also teach you to do it yourself.

Since a couple of weeks of wrapping the arm in layered bandages is standard LE care, don't be afraid to ask her why she's not recommending that for you. If you're comfortable with her answer, that's fair, but if not you can talk over with her what your treatment goals are, and that you want complete care. Hopefully she was only rushed this time when you saw her, and once you're set up with regular appointments she'll slow down. 

If you're dealing with PMPS, did she talk to you about the LE? That might be a good discussion to have as well. There are ways to help control that too, lots of options for ways to provide compression, and hopefully she can help guide you to them.

If she's ordering a sleeve for you to wear, insist on a glove or gauntlet as well. Here's why:
http://lymphedivas.com/lymphedema/gauntletandsleeve/

Like I say, many therapists are pressed for time and "productivity" by their waiting list or their employers, so hopefully she'll be more attentive next time you see her.

Keep us posted, and hang in there!
Binney