Any other newbies out there with Lymphedema?

I second that she should be manually doing the MLD. My LET guy always did MLD when I saw him - never a machine. In fact, he was originally opposed to them. But he finally changed his mind a bit after talking to other LETs around the country and I was the first one he ever ordered a FlexiTouch for.

It takes an hour for it to run the entire program. For me it does a much better job than I do with MLD. It is a large part of keeping my LE controlled, along with my day and night garments.

Something like this might help you move that fluid over to the otherside to drain better. It's a toilet/bottle brush and the foam partthat's all around it is gentle and It moves the skin and I can reach my back. I bend it a bit to customize it

Edited to say. Sorry I can't post the pic ipad is stubborn this morn.

An MLD machine (somethimes called a 'pump') is a computerized box that uses compressed air to simulate human done MLD. There are several different brands - mine is a FlexiTouch.

The only one I have actually seen (or used) is a FlexiTouch. There are 3 sections of garments used - a lower abdomen which also goes on upper thigh, a upper body section that is sort of like a best as it goes around the upper body and the arm section that attaches to the the chest section via velcro and extends to close to finger tips. These section have hoses that connect to the brain box for the air flow as programmed. As with human MLD, the cycle starts with clearing/draining the lymph nodes in thigh and lower abdomen, then it moves up to the chest area and finally onto and down the arm. This takes 30 min. to run. Then it reverses and instead of working in specific areas before moving on as in the first 30 min., for the last 30 min. it starts at the fingers and continually moves up over and down before going back to the fingers again to start the continual movement to gently move the lymph fluid to where it can be moved on away by nodes that were not effected by surgery. So it takes a total of an hour to run the complete cycle. I run mine daily.

There is no way to really predict who will or will not develope LE. Some of us have quite a few nodes removed, and some who had one (or none) removed. There are some who had many nodes removed but never develope LE. I have a friend who had minor, non- invasive knee surgery and she developed worse LE in her leg than I deal with having had 19 nodes removed. For me, my hand, fingers and wrist do not have issues but elbow region is where I have to fight it.

Sleeves come in different compression levels - not all of us can use the same level. Some have to have heavier but for me, heavy actually causes swelling so it's low level for me. But the opposite for some others. Be sure to also get a glove when you get a sleeve.

Also remember to be very careful of even a small cut/scrape or bug bite. Infections can set in quickly and get really bad. Others can give you more info about that - I haven't had any infections in almost 7yrs though I'm not very careful preventing injuries. What works for me is hydrogen peroxide.

MLD machines are not cheap. I don't know the other exact price (or rather your insurance would partially cover it or not) as my care is through VA and I get what is needed. When I got mine, I heard that FlexiTouch went for about $8,000 at the time but that was 6 yrs ago so prices may have come down since then.

If your worst area(s) is chest/upper body/back, a FlexiTouch should help as it includes the upper body in the massage. As I said there are other brands but I know nothing about them - somewhere I seem to remember they are not quite as 'pricey' but not sure.

If you are interested in seeing one, try - www.tactilemedical.com/products/flexitouch/

I had a single mastectomy 8 weeks ago. I feel slight swelling under arm and some shirts feel tight. How do I know if I really have lymphedema? I see PS in January.

I had a lumpectomy Nov 7 then again Nov 29 to clear the margins. Two lymph nodes were removed during the first surgery and were clean. I did have an infection at the lymph node incision and took a course of antibiotics. December 30 my left breast turned yellow - the color of a healing bruise. My surgeon put me on antibiotics to prevent infection. Two weeks later it turned a Brownish red color and became painful. Dr agrees that is us most likely breast lymphedema and is referring me to a physical therapist for massage techniques. Three days ago I started radiation.

My breast is very sore. I am taking meloxicam and Tylenol but it isn't really helping. I am wearing a bra at night but I don't know if that makes it worse. I have large breasts and almost all my bras have underwire - will that make it worse? As of this morning I now have ugly purple bruises under my breast. I just saw the dr on Friday. Any suggestions or similar history

I haven't seen anyone post the link to Step Up Speak Out - a wonderful LE site created with input from BCO women. This site has great info & will answer many of your questions.

http://www.stepup-speakout.org/