Understanding Lymphedema Treatment
Carol: Yes, it does Many doctors do not tell their patients, “No, you know, you don’t need a sleeve.” What is a patient to do in that case? They won’t give them a script for a sleeve.
Julia Osborne: Well you have two options. First of all, many of you have a number of physicians on your team, if you’ve gone through breast cancer; or if you’re a number of years out, then you may not. But if you do have alternate physicians, one of them, I’m sure, will be willing to sign. But if that is not the case, then you can actually go and purchase your own sleeve. You can go to a certified fitter and you would have to find one locally in where you live and you can actually go and purchase the sleeve without insurance. They usually run at about $80 and they have a six months lifespan if you wear them everyday and if you only wear them prophylactically for flights and things like that, then it probably would last you a year.
Operator: Kim from Colorado’s on line; please go ahead.
Kim: Yes, I have a question about elevation. Because we’re in Colorado, what do we do when we’re traveling to lower elevations and then of course back up to the higher elevation? I live in the mountains, so I’m over 10,000 feet. What kind of precautions do I need to take?
Julia Osborne: I would recommend that you have a compression sleeve on hand with you. You may find that when you travel from the high elevation down, your arm does okay. But you may find that when you return back to the higher elevation, your arm struggles a little; or if it doesn’t struggle and you can’t feel it struggling, it is because of the way the pressure changes. So if you are concerned or if your arm feels odd to you, I would put the sleeve on for when you return back up to the mountains. If you’re going on a long trip, so a car, a drive in a vehicle for over two/three hours, then I would put the sleeve on for that too.
Kim: How long do we wear the sleeve after we reach a different elevation, like from an airplane trip?
Julia Osborne: Two hours.
Operator: Elizabeth from New York is on line; please go ahead.
Elizabeth: I have two questions. One is: Is there a limit of when you would wear that sleeve when traveling? Because I read on the Internet, it’s only up to one-year, that you don’t need a sleeve after a year. Is that true?
Julia Osborne: In my opinion no. Basically my thinking is that once you have that structural damage done to your lymphatic system through surgery and radiation, even though you can build up some of the endurance of the lymphatic system there, that damage is always there and therefore you always run some degree of risk of getting lymphedema, unfortunately, for the rest of your life. Now clearly immediately after surgery and for the first year, the risk may be a little higher and as you stabilize and you build up endurance, that risk will decrease. But unfortunately there’s always a small risk and we never quite know exactly what the threshold of that risk is. If you find yourself on an airplane and your lymph system becomes overly stressed and you do go past that threshold and you don’t have a sleeve, then you can end up with lymphedema and this does happen. I have patients who 15/20 years after come to me with lymphedema from a long international flight or something like that. So I disagree. The risk is always there. It may change, but it’s always there and I would always protect against it.
Elizabeth: My other question was: I find that whenever any type of housework I do, I could be okay and all of sudden when I do any type of housework, I swell up in the armpit underneath the arm and like where my drains were from the mastectomy.
Julia Osborne: That’s very observant of you and that happens a lot. What’s happening is that is what I call an inverted caumas [sic], a little precursor to lymphedema. You are essentially overstressing that area by doing the housework. I’m certainly not saying that you shouldn’t do the housework, you should, but you may be just doing it for too long of a time period in one go. So I don’t know how many hours you’re at it, but you may want to cut down.
Elizabeth: Well it takes me a long time because I also have compressed disk in my neck and stuff. My doctor says it’s not even lymphedema, but I’m swelling; my left arm is bigger. I went to lymphedema specialist and he ordered an air compression sleeve. But when I use the sleeve, I swelled up more.
Julia Osborne: No, that is… Don’t use the sleeve and it’s not lymphedema, but you’re overstressing your shoulder and that surgery area, so you’re… It’s a precursor and any day, if you really overdo it, you could get lymphedema. So the swelling right now is not, but it’s your body’s way of telling you that you are doing a little too much and you either need to shorten the time period or spread the housework over more days so that you don’t get that swelling.
Elizabeth: So you’re saying don’t use the air compression sleeve.
Julia Osborne: Personally I would not.
Elizabeth: Okay, because I found I swelled up and it took about a week and a half before the swelling went down after using that sleeve.
Julia Osborne: Exactly. I would not irritate anything that’s not irritated. So my personal opinion is: No, you just need to change how you’re doing your housework.
Operator: Karen from Florida’s on line; please go ahead.
Karen: Yes, thank you. My therapist recommended or did with the massaging, just as you recommended; and I felt good about that. She also included a home program of exercises to do in the bandages or the compression sleeve. Do you use that in your therapy as well?
Julia Osborne: Yes, and the only reason I didn’t really talk about that tonight is because I felt it might be complicated and people might want to know what the exercises were so… But, yes, I strongly advocate that. She is absolutely on the right track and keep going, yeah.
Karen: Good and she says to do with the garment on.
Julia Osborne: Yes, because you’ll be activating those muscle pumps a little more strongly and that will move the lymph fluid. That’s why she wants you to do it like that.
Karen: Okay, and then another question I have for you is: Are there things such, you’ve mentioned housework now, and I appreciate that, are there other things that we can look out for in our everyday lives that will help keep this in check?
