GRRRRRRRRR I HATE LE..........

LW422

Hey -2. We finally got some rain this week! Thanks; I suppose I have always believed that after having 32 nodes removed that it was just a matter of time until I got LE. I was really hoping that the preventative LVA procedure would help me... and maybe it did. So many unknowns with this stuff. I have an appointment next month with the PS who did my LVA and I'm going to ask about having another procedure to try to get more connections in my arm.

Is "Joan" Joan Ong Yiu? That's the only Joan I see at MDA on the LANA website. Do you have any swelling or other LE symptoms in your arm? I'm just wondering how many people with mild LE are able to deal with it without wearing "garments." I'm going to go that route as long as I can.

I sent an email to the lymphdemachallenger.com website to see if there are any in-depth videos from JoAnn Rovig, and was surprised to get an email response from JoAnn herself! She is such an advocate and a genuinely nice person. Anyway, there are no other videos but her original ones are online at http://www.lymphedemachallenger.com/lymphedema-videos/ if anyone is interested. She also has a self-wrapping video and others on Youtube.

Rah2464

lw I have mild to moderate swelling in my arm, armpit, and trunk area on my cancer side. All this with only 4 nodes removed. But i find I tend to have "flareups" created by overuse of that arm or heat or perhaps something else like stress. Most of the time I can manage with selectively using gauntlets or sleeves or that wonderful compression bra that Minus 2 talks about. You just kind of have to try a bit of everything and see what works best for you. I haven't been able to find a rhyme or reason but I do think that routine lymphatic clearing by a knowledgeable lymphatic massage therapist worth its weight in gold. I see mine once a month trying to stretch it to every six weeks.

MinusTwo

lw -yup, that's the Joan. I do get some swelling in my chest & trunk - and it can move to my upper arm if I don't catch it.

Lucky you with the rain. I talked to some friends down by the Astrodome and they got a deluge. I'm up by 290 & the Beltway. So far we got ONLY TWO MINUTES on Tuesday and only a misting today. Lawn is brown & crunchy.

Edited to say - one of the major causes that can aggravate my arm is pulling/pushing a vacuum. Guess who doesn't do that often?

LW422

Thanks, Rah2464. I know that everyone's experience is unique (while at the same time it isn't!!) There are so many unknowns in the whole LE thing... who gets it, how severe, and why. I've been learning everything I can about the different self-care routines while basically living my life as usual. I'm calling the MDA PT on Monday to set up an exam and massage, and once again discuss sleeves/gloves since I've had ZERO success finding one off-the-shelf. (That was their recommendation at my last appointment; to get a sleeve "just in case" I fly or whatever.) Today my arm looks and feels totally normal, thank goodness. Hope you're feeling well these days.

Hey again, -2!! OMG, we got a little over 3" of rain in two days. Our lawn and landscaping has totally pepped up today! I'm going to get back to MDA ASAP for a consult and a massage. I'm not noticing the truncal swelling any longer; my PS claimed that was "surgical edema" but it took learning the Lebed Method and lots of stretches to get that resolved. Honestly I haven't found a medical professional (surgeons, PAs, PTs, etc.) that I have had any confidence in as far as LE knowledge. Even the LANA-certified PT I saw last time seemed fairly clueless; they all insisted that I didn't have LE but I know my body and my right arm has definitely changed.

HAHA, vacuuming!! While I was having chemo last year I bought two robotic vacuum cleaners... one for upstairs and one for downstairs. I have been amazed at how well those things work!! That was some of the best money I have spent in years.

I hope the "LE Sisters" will find their way back to this thread. It seems that there isn't a lot of LE support anywhere, so we all need each other... especially the newly-diagnosed.

Happy 4th of July weekend everyone. Hope you are all doing well.

Bong

Hi Lw44- Not sure if this helps but the PTat MDA recommended a just in case sleeve for me, with the appropriate sizing etc. I then took it to the radiation oncologist who wrote a prescription. Insurance covered it.

LW422

Thanks, Bong. I got the same recommendation from the MDA PT for the "just in case" sleeve but I was unable to find an off-the-shelf that would work for my granny arm. (Large upper arm, normal forearm and wrist) Even with a prescription Medicare doesn't pay for LE garments, which is a shame; they are medically necessary so why aren't they covered??

Speaking of the MDA PT... did you like the one you used, Bong? If so, can you give me their name? I haven't been impressed with the ones I have dealt with so far.

Bong

My husband and I liked Erin Austin,and a woman named Tracy. I met with them in conjunction with radiation at Mays clinic

LW422

Thanks. Do you know if they are LANA certified? I think I have had a session with Tracy. I liked having PT at Mays; it's a lot more private than at the main building.

Bong

Hi Lw44 - yes. They are LANA certified.