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Lymphedema Prevention and Treatment:

What You Need To Know


February 25, 2006
Trudy Turvey, MS, PT

LANITA MOSS: Through that clinic, I have, since 1999, seen more than likely would be in your legs and your
Welcome, everybody, to “Lymphedema many individuals with lymphedema. My approach abdomen. It can be in many different places.
Prevention and Treatment: What You Need to tends to be not quite as “cookbook” as you might There are different ways of categorizing
Know.” My name is Lanita Moss. I am one of the have encountered, those of you who have lymphedema. Primary lymphedema – they call it
co-founders and vice president of the Young lymphedema. I try to look at the latest science and hereditary, but that’s not necessarily the truth of
Survival Coalition [http://www.youngsurvival.org]. see every individual as an individual, because if you it. It is a lymphedema that we don’t totally
It is an absolute honor to be here this weekend with have lymphedema, your lymphedema is not like understand; we don’t understand either of them,
so many young women [and] that somehow, out the person’s next to you. Everybody’s lymphedema frankly, very well. [Primary lymphedema] might
of dumb luck, three women about seven years ago is different, and you’ll respond to treatment [arise] because there are malformations or there is
pulled an organization together that can impact so differently. That is something I have observed a poorly developed lymphatic system from the get-
many people in their lives. I am honored to be in through my time of treating people. go. This lymphedema might not show up for years,
the presence of all of you guys, and I’m glad you Many people go to clinics and are given a but later in the teens or even adulthood, something
made the trip to Denver this weekend. cookbook way of approaching their lymphedema. might trigger that. The treatment for that
I would like to introduce our speaker, Trudy Some of that cookbook works and some of it lymphedema is the same as for secondary
Turvey, the president and clinical director of doesn’t, yet the whole cookbook is expected to be lymphedema, which is really what we’re here to talk
HealthLinks Clinic in Boulder, Colorado. She has followed. That’s not how anybody should approach about today. Those of you here who have
over 30 years of experience as a clinician, any treatment, least of all lymphedema, as far as lymphedema, it would be categorized as secondary
administrator and teacher. She’s well known for I’m concerned. I encourage you during this lymphedema, and it’s from some type of trauma or
her expertise in the areas of postsurgical therapy presentation to please ask me questions. You might insult to the system later in life.
for breast cancer, lymphedema and exercise have tried something, if you do have lymphedema, Let’s talk a minute about the anatomy. The
assessment and training. She has been a speaker that didn’t work. The question is, “Well, why didn’t lymphatic system is not a very well understood
for the nationally acclaimed Day of Caring. She it work for me? It worked for so-and-so.” I will try system – I should tell you that. When your
values her personal relationships with her patients to help you through that. physicians don’t know what to do, it’s because this
and, above all, offers individualized quality care to If you feel comfortable, if you have system was not really addressed in medical school.
each of them. I’m going to turn this over to Trudy. lymphedema, would you let me know that in the Perhaps in medical school, survivorship wasn’t as
She’s going to give her presentation, and then we’ll audience just with the raising of your hands? much of an issue, but now we have many, many
do a question-and-answer period. Thank you. My other experience is that people survivors, and lymphedema as a complication of
TRUDY TURVEY, MS, PT: with the diagnosis often know a lot more than the treatment or the disease certainly exists plentifully.
Thanks, Lanita. Well, thanks for being here. people who are treating it, so if you have something The lymphatic system, by the way, is
I’m happy to be here and absolutely amazed at to offer, this is the time to offer it to people, microscopic. For someone to actually dissect the
the number of people who are here. HealthLinks because I’m really open to hearing whether lymphatic system is a very specialized dissection; [it
Clinic in Boulder addresses the needs, such as something different worked for you. I know requires] someone with skills beyond the normal,
lymphedema, of individuals who have been everybody else would welcome that as well. if you will, anatomist. It is microscopic. These
diagnosed with cancer. We try to help people Let’s talk a little bit about what lymphedema capillaries – they’re called lymphatic capillaries –
once they’re diagnosed look at their lives in terms is. For those of you who do not have it and many of them lie right underneath the skin. That’s
of survivorship – what are you going to do to be perhaps have not been exposed, lymphedema important to know because that’s part of why the
the healthiest survivor? – and try to pull together essentially is an accumulation of fluid. It’s in the treatment approach is used. These capillaries
all kinds of things like nutrition and exercise, tissues. If you’ve had breast cancer surgery, it would connect to deeper vessels, which connect and go
lymphedema care, postsurgical care and most obviously be in your arm, your trunk, your through nodes, and the fluid is filtered through
emotional support. breast, sometimes your back. If you’ve had neck the nodes. It ultimately gets back up to the heart
surgery, it would be in your neck. If you’ve had and dumped back into the cardiac system to be
surgery for, say, colon cancer or ovarian cancer, it put in with the blood, and back out it goes.
Lymph fluid is not a special fluid that people cancer survivors. Their arms became very swollen, people, of course, who did not have radiation
with lymphedema have. It’s fluid that I have and and now they do have lymphedema, but they did who’ve had lymphedema. It’s not a cure-all, refusing
anyone else has. They call it lymphedema – not have it prior to the infection. the radiation. In fact, we know radiation does
“edema” meaning swelling, and “lymph” because Insect bites – we’ll talk a little bit more about improve chances for survival, so I wouldn’t want
it’s the lymphatic system that’s not working very how important insect repellent is for you all – and someone to make that choice – and radiation adds
well. Some people have a sense that it’s some other burns: The reason some of these things cause only 1 percent to 2 percent in terms of the total
fluid, but it’s really not. lymphedema, like insect bites and burns and risk for lymphedema.
To put it in a nutshell for you, you have arteries infection, is that the body is going to respond to Tumor, of course, can block the lymphatics.
delivering proteins, tissue nutrients and fluid to that and send a lot of blood to try to heal. When When I get a patient who has new lymphedema,
your tissues. For my arm to work, my muscles need more blood than normal is sent and the lymphatic the very first thing I’m going to ask is, “Well, what
those nutrients. Once my tissues are done with it, system is impaired, the system cannot handle that test has your physician done?”We need to make
the venous system brings back the majority of it. overload. There is a much greater supply of tissue sure it’s not a blood clot. We need to make sure it’s
The lymphatic system brings back approximately nutrients than the lymphatic system is prepared not new tumor. Should you develop lymphedema,
10 percent of what’s not used. to handle. The surgery for breast cancer most of you don’t go straight to the therapist who’s going
The other very important thing about the the time involves removal of nodes. When you to provide lymphedema therapy. You go straight
lymphatic system is that because of its structure, it remove those nodes, you remove part of the to your oncologist so he or she can do these tests
is able to bring back larger molecules – the protein, lymphatic system. and make sure you don’t have a clot and you don’t
the fatty deposits. Hence, if it’s not working, that Try to visualize this with me. Nodes are not have tumor. It’s very important, because treating
stuff stays out in the tissues, and therein is the discrete little things that physicians can pull out lymphedema with tumor preset, you won’t get
reason for the infections, the cellulitis that people one by one. They are, by and large, embedded in anywhere – you can’t. The tumor needs to be
get. That’s a very important thing to understand, your tissue. When they’re doing the surgery, they addressed as to where that tumor is, and probably
because one of the biggest issues for people with reach in and pull out this bunch of tissue, and there will be some other chemo or radiation to
lymphedema is the whole infectious process. maybe there are four nodes in there for me; maybe manage that.
WOMAN: there are seven nodes in there for somebody else. Any questions about the causes?
When you were talking about the lymph There’s no discreet way of pulling them out. WOMAN:
system taking bigger things, do you mean bigger Occasionally there will be an enlarged one, and I’m curious about what you were just saying
toxins? perhaps that could be pulled out. With that [tissue] about having a clot. What kind of tests would you
are all of these lymphatic tubules that are do for that?
TRUDY TURVEY, MS, PT: connected there, so now you’ve lost these ways for
Well, bigger molecules. Proteins are larger the fluid to get back through the nodes and back TRUDY TURVEY, MS, PT:
molecules, and those can’t travel through the venous into the central system to be handled by the cardiac They would do an ultrasound.
system. They’re too large to get into it. system. That’s what this surgery does. WOMAN:
WOMAN: I’ve had people say, “But they only took one Of your arm?
Oh, so if your lymph system isn’t working, node out.” It is our hope that sentinel node surgery
TRUDY TURVEY, MS, PT:
they get stuck? can reduce the risk for lymphedema. In fact, the
Of the arm. Any time new lymphedema
fewer nodes you have taken out, the less is your
TRUDY TURVEY, MS, PT: appears, I would say nine times out of ten, an
likelihood of developing [lymphedema], at least
They stay there. Right. What are the causes ultrasound is done to rule out a clot. Let me give
as far as we know right now. Even with a sentinel
of lymphedema? Why would one have you an example: tamoxifen. If you were newly put
node [surgery], I have had patients who have had
lymphedema? Well, certainly surgery, and that can on tamoxifen and you got some arm swelling, that
lymphedema. It’s not a way of totally preventing
be any surgery. It could be knee surgery, surgery could be a clot, and usually that is painful. That’s
it, having just one node removed – it’s important
totally unrelated to cancer. For individuals with a one way to differentiate, but don’t diagnose
to understand that.
cancer diagnosis, it has some particular things that yourself. I mean, truly, that’s a life-threatening
Radiation itself destroys lymphatic tissue.
we’re dealing with. emergency and you need to have that addressed.
Radiation essentially causes the tissue to be non-
Radiation, tumor, venous insufficiency – when With tamoxifen, as many of you may know, one of
elastic and non-functioning. “Fibrosed” is the way
you see elderly people walking around and their its unpleasant side effects is blood clotting.
you might describe it. Those tissues become
legs are really swollen, that’s not just venous This is very important: I have had many
scarred, and once they’re scarred, they’re really non-
insufficiency. What happens is the lymphatic people who have been treated for lymphedema
functioning; those tissues will not regenerate. There
system gets overwhelmed, so those individuals also when really what they had was postsurgical
is some good evidence that without radiation,
will respond to lymphatic therapy. Infection – I swelling. You can imagine, if any of you are in this
lymphatic tissues can regenerate, but not across
have two people in my practice right now who did category, getting some swelling after your surgery,
the board. Saying to yourself, “Well, darn it, if I
not have lymphedema but got infections in their going to a therapist who claims to have
hadn’t had that radiation, I might not have that
arms through some other process. They are breast lymphedema experience, and he or she says, “Oh,
lymphedema,” that’s a really iffy thing. I have seen
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my gosh, you have lymphedema. You need to get WOMAN: them do that. I don’t care where else they want to
these treatments. And, by the way, you didn’t have The first time I got lymphedema, a doctor – put the [needles], but not in that arm.
insurance, so you’re going to have to pay for these how did I find out I had lymphedema? They didn’t IVs: I had another patient who had a problem
out-of-pocket, and they are about $1,000 to do any type of tests. It just swelled up and I took with putting them in the opposite arm, but you’ve
$2,000. And you need to wear a sleeve for the rest different types of therapies for six weeks, and then got to make the health care worker work a little
of your life.” it went away. harder and find another place for that IV. She had
I have had patients who have had that done, TRUDY TURVEY, MS, PT: an IV put in her surgical arm, and she got arm
and the depression that follows that and the trauma Well, we’ll talk a little bit about the going away lymphedema and breast lymphedema. This is
of that, to me, is just really unnecessary. Most business, because it doesn’t always go away. number one: Don’t let anybody do this.
people after surgery are going to have some Good skin care: Again, I say these things
swelling. It would be unusual to not have some WOMAN: because these are things you can do. In the winter
swelling in your trunk, in your breast tissue area That’s what she said. when we get these little cuts … on the end of our
and in your arm. It usually resolves in six to 12 TRUDY TURVEY, MS, PT: fingers – they’re very prevalent, and it’s hard to not
weeks. The treatment is to use your arm. Move it, Lymphedema is its own little monster. Let’s get them. Try to keep your skin very well
because moving it is going to help that lymphatic talk about prevention, and then we’ll talk about moisturized, because dry skin is more prone to
system function. Elevate it – that kind of swelling treatment. … You could just go to bed for the rest having openings and more prone to inviting
does respond to elevation. of your life, and you could still get lymphedema. bacteria in.
Lymphedema, unless it’s very, very early, and I say that by way of telling you to throw out the I urge people to use something that does not
even then it’s a little questionable, does not respond guilt. This is not about guilt. You could get it; you have a fragrance, because you never know when
very well to elevation – maybe a smidge; not a could not get it. It’s not because you stood on your you might have a reaction to a fragrance. Some of
whole lot – but [postsurgical] swelling will respond head or you had too much wine or anything.You my elderly people, I tell them to just use the canola
to elevation. You can do hand open-and-close just get it. oil in the cupboard. That’s great – non-aromatic,
exercises; that will also facilitate the lymphatic People have said to me, “Well, I was really and it really keeps the moisture in. Put moisturizer
system. Remember, this is not lymphedema, so if bad.” Well, the last thing any of you need is to on when your skin is still wet, not after you’ve
you have a gut sense that, “Oh, gosh, I have this perceive yourselves as bad. You have had more than dried, because the whole idea of cream is to keep
swelling [but] I just had surgery” and someone’s your lion’s share of things to deal with. moisture in. Once you’ve taken it away, the cream
told you that, try to get another opinion, because Lymphedema is going to come or it’s not going is just there.
it’s really not lymphedema. to come, and then the question is, “What do we Protective gloves: I urge people to do this for
WOMAN: do?”There are a few things I can tell you, however, a couple of reasons. If they work with roses in the
I’m confused, too, now. I’ve got lymphedema. that had they not happened, this person, at least garden, thorns can really cause a problem. I am a
I say it’s been like six years, but last year I had three at that time, might not have gotten lymphedema. gardener and I hate gloves, but around the rose
surgeries, and it would usually swell up my arm The first of them is infection. It’s not like you bushes is a good place to wear them. Also, use
more after the surgery. The last one was in go around asking for infection, right? Sometimes protective gloves when you’re reaching into the
December. … It kind of swells up after the people end up having maybe a second surgery. oven, because burns can cause lymphedema. Your
surgery, but I’ve still got lymphedema. Do I need Maybe their margins weren’t clean, or whatever body wants to heal that burn, so it’s going to send
to go somewhere to make sure it’s not? Can I have reason, and they get a little infection. They might a lot of stuff there. Those are the two places I
the swelling after the surgery and lymphedema? get some lymphedema. Patients who get that kind, think are most important in terms of gloves.
for the most part, have a good chance of being Insect repellents: If you have an arm or a leg
TRUDY TURVEY, MS, PT: treated and having it be minimal. that already has some kind of impaired lymphatic
You could have both. If you already had Of all of the things the National system and you get a mosquito bite … it’s an
lymphedema and then you had some more surgery, Lymphedema Network [recommends], not letting invasion of the system, and your body is going to
you could have some additional swelling that goes someone put a needle in that surgical arm is try to heal that area, right? It’s the same thing as a
on there. For that, the treatment would be the probably the most important thing, because a burn. Use the insect repellents. I know people have
same. You would wear your sleeve or your needle opens the skin. Bacteria get in there, and a problem with DEET and all of that, but you
bandages, whatever you’ve been used to. You could the lymphatic system does not like having bacteria can use the other ones and just put them on a lot
get some treatments, some massage – I will do in there. I don’t care what shot it is. I have a patient more frequently. That’s a really important one. I
massage for this, but I would never put someone in right now who is 30 years out from her surgery. had a gentleman who had primary lymphedema.
a sleeve for this swelling. Thirty years – you can imagine that at that time He just all of a sudden had these legs that swelled.
Let me tell you this so maybe it will motivate she had the radical mastectomy. She never had We had treated for about six weeks, and he was
you. The earlier you get to it, the more likely it is lymphedema until she got a flu shot 30 years later. looking great. He walked out in his garden with
to respond. If you would treat it now, it would be Of all of the things in the world I think to tell shorts on; his leg came back bigger than when I
much better than if you wait six months, and you’ll people, it’s don’t let anybody put a needle there. first saw him because he had one mosquito bite.
have a good chance of having it go down. That includes acupuncture needles. … Do not let Please be careful about that.
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WOMAN: If you think you have [an infection], run, don’t you understand the physiology of it, then when
I was just wondering, is the lymphedema worse walk, to your physician and get antibiotics. I try other circumstances come up that I missed and
[when there’s] bigger, more swelling? Is that how to get my patients to think about this way ahead of didn’t address, you can say, “Huh, this is probably
you tell if it’s worse? time. If they travel, they need to know where they what’s going to happen here. I better take care of
TRUDY TURVEY, MS, PT: are going to get antibiotics if they’re out of the this this way.” That’s why I’m emphasizing this.
Yes. That’s how it’s graded. There are a couple country. I’m thinking of one patient who had gone Use oven mitts when you reach into the oven so
of different grading systems for lymphedema, but to Costa Rica. She was on a hiking trip, got a ton you don’t get a burn.
a simple one uses mild, moderate and severe grades. of bites and didn’t take antibiotics. Oh, my Saunas and hot tubs – the biggest question I
Mild is less than an inch compared with the other. goodness – she was so swollen, and not for get is, “Can I please go in the hot tub?”Well,
I don’t typically call that mild, but that’s the system months, but for years. Really, [if you get] an physiology, again: If your core gets hot, how does
that’s been set up. An inch to 2.5 inches is infection, take those antibiotics. your body try to cool down your core? It sends
moderate, and anything more than that is severe. Take a scrip with you if you’re going to be in blood out here, right, or to the legs? If it sends blood
the United States. If you’re out of the country, out here and your lymphatic system is compromised,
WOMAN: take the antibiotics with you. If your physician will it has a devil of a time getting rid of that.
I also have a frozen shoulder that I developed. give them to you, take the antibiotics with you so What I tell people is to go in up to here. Keep
If I do too many of the exercises for the frozen you can just take them immediately. Now, there is your arms out and keep part of your trunk out so
shoulder, the lymphedema comes and I get a fever. a difference between an infection and an arm that the heat can be dissipated without sending it out
I never get that swollen, but I get a little swollen, just feels warm. If the lymphatics get irritated – to your arms, but go ahead and go in. Saunas are
so then we cut that down. Can you ever redirect and they can get irritated by aggressive activity or the same way. It’s a little harder to keep part of you
your lymph gland system? because they’re going to get irritated – the arm out of the sauna, however, so I feel like maybe you
TRUDY TURVEY, MS, PT: may feel a little red, a little warm. That’s called don’t want to do that. To tell you the truth, do we
Yes – that’s what the treatment is aimed to do. lymphangitis, by the way. have good research about this? No. Those
I’ll talk about that in a minute. I’d also like to A lot of people postsurigcally have breasts that recommendations are purely based on physiology
address your frozen shoulder. When you say you are red and warm, and antibiotics don’t do anything. and what might happen. Have I ever had a patient
get a fever, do you get a temperature change, or That’s because that’s not an infection. It’s really a come to me and say, “I got this when I was in the
does your arm just get warm? lymphangitis, and the thing that helps that the most hot tub”? No.
is the massage that I’m going to talk about – very I’m a big believer in living your life, by the way,
WOMAN:
gentle lymphatic drainage massage. [The redness and not giving you a long list of don’t-dos. These
My arm and my breasts get warm, but I
and warmth] can last for months, but that is not are the things I’ve seen problems with, so I will tell
actually get a fever.
an infection. Any time you have redness and you those. I’ve seen more than one problem. These
TRUDY TURVEY, MS, PT: warmth, though, you should at least try the are not things I’ve seen once in my lifetime with
In that instance, probably what’s happening is antibiotics and see if that’s what’s happening. lymphedema. I’ve seen it over and over again. The
– well, one [possibility] would be the type of Temperature and chills: If you have once-in-a-lifetime things could have been anything,
activity you’re doing and the intensity of it. Because temperature or chills, it’s gone a little too far. You and I’ll give you an example of that a little later, too.
your shoulder is frozen, the lymphatic system need to get into your doctor or get into the ER. I Constriction: The biggest issue might be
doesn’t have a very good leeway, if you will. It’s not had a patient who came to me who had pretty backpacks, hiking, heavy purses. If you were at risk
open for that fluid to get through, and then it sits significant lymphedema, and we had been treating for lymphedema and you hang something here,
there, and then you get a little cellulitis. I’m going it. Her arm was a little warm, but the telling thing you are shutting off that pathway that’s already
to talk about cellulitis in a minute. was that she said, “Oh, Trudy, I’m so cold.” I mean, impaired. A good thing to think about doing: Get
Signs of an infection: Infection is really this was summer in Boulder, and she’s a big a fanny pack; get a purse that doesn’t hang on your
important for you to treat – not tomorrow, not woman, so it wasn’t like she was skinny and didn’t shoulder. Besides that, most people have shoulder
the next day, but as soon as you think you have an have anything to keep her warm. Systemically, she problems after their surgery anyhow, and that purse
infection. This type of infection can land you in was getting an infection. Not only was it in her is not helping them. I like to have people try to
the hospital if it’s untreated. What happens is that arm, but she needed IV antibiotics and needed to minimize that, and don’t carry everything but the
if the lymphatic system is not working – be in the hospital. Don’t ignore temperature and kitchen sink in it, either.
remember, the lymphatic system is responsible for chills – very important. Blood pressure: This is a big one. Everybody’s
bringing those proteins and fatty deposits and all Prevention of burns: Well, we’re not supposed been told, “Don’t have your blood pressure taken
of that back, and if that sits in the system, it’s a to be getting a sunburn anyhow, right? That should in that surgical arm,” because one person said, “I
medium for a bacterial infection without you doing be pretty clear to people. When you think about a got my lymphedema after I did the blood pressure.”
anything. Just sitting there, you can brew an sunburn, it’s a burn. It’s not just, “Oh, I’m tan.” Probably not. There was a study done, relatively
infection. People say, “I didn’t do anything. I don’t It’s a burn, and a burn is going to require your in the last couple of years, where they took women
have a cut or anything, and I have an infection.” system to respond to it. Again, a lot of blood goes who had carpal tunnel problems, women who had
And that is very true. to that area and tries to heal it. I’m hoping that if had breast cancer surgery – carpal tunnel, for those
Page 4
of you who don’t know, is basically a wrist-pain WOMAN: When I see people for exercise – these are
issue – and when they do that surgery now they What kind of doctor or massage person women who maybe were pretty active prior to their
put a tourniquet on, and you have that tourniquet would do scar tissue massage? diagnosis – and I hand them a one-pound weight,
on for four hours. TRUDY TURVEY, MS, PT: they look at me like I’m crazy, but I’m not. They
None of those people developed lymphedema, A physical therapist. need to start out very low, some of them without
and in none of the people who had lymphedema any resistance, and build up. I build them up from
did it get worse. Is the blood pressure thing a real WOMAN: one pound, five repetitions, up to ten. No pain
issue? I would say not. Do I still take blood But a physical therapist dealing with ... ? and no problems? Great – two pounds, five
pressures on other arms? Yes. Because people are TRUDY TURVEY, MS, PT: repetitions, then six, seven, up to ten and come
so freaked out about it, it’s not worth it to me to Dealing with lymphedema and breast cancer back; then three pounds.
freak them out more and give them the big, long surgery. By and large, they do just fine. They have very
lecture about the study. But, just so you know, it’s few shoulder problems, unless they had preexisting
WOMAN:
probably really not the issue. shoulder problems; then it’s a little different. A lot
You haven’t mentioned, I think, repetitive
Range of motion: It is really important for of women get rotator cuff issues, maybe because
motion.
you to have the best range of motion possible in they were really active before or they were really
that surgical arm. That includes minimizing scar TRUDY TURVEY, MS, PT: weak before, and there are some special
tissue. If you have not seen a physical therapist I’m getting there. We’re going to talk about considerations there. By and large, though, a slow,
after your surgery, you should see a physical gentle massage. Go get that massage, but around progressive resistive training program is how you
therapist who can evaluate the extent of scar tissue your shoulder and your trunk and your surgical want to do it. It may seem silly to you to lift one
and can treat it. Physical therapists know how to side, it should be very gentle, not deep tissue pound if you lifted 25 before, but I guarantee you
treat it, and it’s really important, because just having massage. Really deep tissue massage can worsen if you do it that way, you’re going to be far happier
scar tissue massage can minimize lymphedema. lymphedema or produce it if you’re at risk, so make and you won’t set yourself back.
That’s all it might take. sure your massage therapist realizes that and don’t
WOMAN:
Now, if you have full range of motion and do deep tissue massage there.
I was thinking more like using a computer
everything feels really lose in there, chances are you Active range of motion: This is my plea to get
mouse or washing dishes or even walking outside
don’t have a lot of scar tissue. But there are many the best range of motion you can get after your
with an arm swinging, like, in the heat. I haven’t
people walking around whose range of motion is surgery. That does not mean that you do the Reach
had swelling, but all of those caused my arm to
less than what I would say is desirable, and they to Recovery exercises and say, “Oh, great, I can get
ache for a longer period of time. One of the young
have a fair amount of scar tissue. Some people scar up here.”You know what? That’s not anywhere near
women I know who has lymphedema, it started
more than others internally and externally. You full range of motion. You really need someone to
to hurt after she was working on the computer
know, when you get cut, some people get scars evaluate that. Those Reach to Recovery exercises
and using the mouse quite a bit with that hand. I
there, and for other people it’s just flat as could be. are great to get you started, but it’s a rare bird who
just wondered what you thought of that.
That’s just a difference in our bodies and how can figure out, “I don’t really have full range of
much keloid we produce. motion and I need someone to help me with this.” TRUDY TURVEY, MS, PT:
Scar tissue massage is a very important thing Please go for that. The question – without knowing her, of course
if it’s appropriate for you. I was at a talk several Progressive resistance training: This is the whole – that I would have is whether lymphedema was
years ago where a woman on the panel was a repetitive motion issue. For a long, long time all of bothering her arm or she’s developing a carpal tunnel,
gardener, and she had some lymphedema and was you in the room – three years ago, even – would have which is almost like an epidemic that we have.
told essentially to never garden again. Well, if you been told to minimize your exercise and don’t do any Probably what happened in that instance is
tell me to never garden again, I’m checking out, repetitive motion. Probably some of you are being … she had irritation. She probably had some
because that is my love. It’s my therapy. It’s the only told that even today. It’s not the repetitive motion inflammation of her forearm tendons because of
thing that keeps me sane, and that’s what was true that’s a problem. It’s the eight hours of canoeing or the computer work. Again, the body sends blood
for her. She was just in tears. the eight hours of washing your windows that are a [and nutrients, etc.] to heal it, and her whole arm
She was also told she couldn’t go to altitude. In problem when you haven’t done it in months. swells because she has a compromised lymphatic
Colorado? What is that about? I couldn’t really say The research is showing us, and I will say to you system. What should she have done? She probably
anything in that panel because the person who was that PTs’ experience, PTs who specialize in this, is should have started on the computer very slowly,
treating her was on the panel, but the woman sat that if you train someone and start slowly and do for a few minutes. Work up to five, work up to
next to me in the next conference and I asked her progressive resistive training and get that arm strong ten, so those muscles are not going to get inflamed.
if she’d had PT. She said no, so I referred her to a with full range of motion, then the repetitive motion It’s the inflammation that’s the problem. It’s not
PT in her area who did scar tissue massage on her. is not an issue, unless she does it for eight hours. the activity itself; it’s what the activity does to us.
Her lymphedema went away. She was able to do But you know what? I shouldn’t be doing eight hours WOMAN:
all this stuff. So, don’t stop – I just want to urge of repetitive motion. Some of it is a little bit of So, an arm that aches without any swelling –
you to get good treatment. common sense in terms of what you do. is that an early sign of lymphedema or a concern?
Page 5
TRUDY TURVEY, MS, PT: TRUDY TURVEY, MS, PT: TRUDY TURVEY, MS, PT:
Well, it would be a concern for me. What you Ouch. I don’t know. If you wax, having never I would say those are more related to scar
need to know is that for an arm to be visibly done it, I’m thinking it would cause inflammation tissue. When you get nerve regeneration, the nerve
swollen, the tissue has to have an increase of about there. I don’t know. Those of you who do it, you’ve doesn’t always regenerate and produce normal
60 percent of its fluid in there. I can’t measure it got to tell me. Does it cause inflammation? feeling. The medical word for it is “dysesthesia,”
until it’s that high. Chances are, there is some fluid WOMAN: kind of like dysfunction, or abnormal feeling.
in there, and one of the best tests for that is to find If you’re pulling your skin, it could probably Sometimes that’s mixed in with the scar tissue.
someone who’s a specialist who can wrap you with … Sometimes you can get little nerve endings that
short stretch bandages and see if that helps. If it’s are stuck in that scar tissue, which is why scar tissue
a lymphedema issue, I would be willing to say that TRUDY TURVEY, MS, PT: massage is kind of nice. Also, at least people tell
is really going to help you. Most people say, “Oh, I would think it would inflame that area. me, it kind of never really feels the same again.
gosh, this feels so good.” Do you live here? WOMAN: Those might be some of the reasons.
WOMAN: It would be like sunburn. WOMAN:
Yeah. TRUDY TURVEY, MS, PT: Have you found swimming to be helpful?
TRUDY TURVEY, MS, PT: Yeah, it would be an irritation, and the body TRUDY TURVEY, MS, PT:
If we could find someone who knew how to is going to want to heal that. It may depend on I think swimming is a great activity, once you
do this wrapping for you, that would be a good whether you’ve always waxed and your skin is have good range of motion and if you start slowly.
thing. toughened there, whether repeated waxing would It keeps you really limber. The water pressure tends
coarsen the skin. I don’t know. to push fluids back into the system, and it keeps
WOMAN:
What do you mean by short stretch? WOMAN: you very fit, so I think it’s a great activity. We’ll talk
No, it’s much softer. about more activities, too.
TRUDY TURVEY, MS, PT: We now know that moderate exercise and –
They’re called short stretch bandages. When TRUDY TURVEY, MS, PT:
contrary to that study that came out a week and
you think about Ace bandages, if I pulled it like Oh, it’s much softer? Really? I would look to
a half ago – a diet with about 20 percent fat does
this, it would stretch forever, right? Well, short see if it’s red. That would be the indication to me
reduce recurrence. Is it going to reduce recurrence
stretch, that’s the amount of stretch. Those are the that it’s a little inflamed. It may be just fine. Again,
in 100 percent [of people]? No. But it is as
types of bandages that are used in lymphedema I would hate to tell you to do that, but people have
effective as or has the same risk reduction as taking
treatment. I urge you to keep walking, though. I done worse and been just fine. There is certainly
tamoxifen. Wow. That’s something you can do for
would never say to you, “Don’t walk.” Let’s figure no study.They do tell you to shave with an electric
yourself. I’m not talking about running or doing
out if we can help with this achiness and figure razor.
marathons. I’m talking about going out and
out why it’s really aching. I don’t know about you guys, but I have never
walking four or five times a week and doing some
Is it lymphedema? Is it postsurgical weakness? cut my underarm with a regular razor, so I think,
weight training three times a week.
There are a lot of reasons for that aching to well, why would you do that? The caveat would be
You all know – those of you who have been
happen. Again, let me say to you, please, if you’re over the scar that you had your lymph nodes
introduced to the lovely tamoxifen and what it
not exercising, please find yourself someone to removed from, because that doesn’t have very good
does – that weight gain is part of that. We’re trying
work with you on progressive resistive training as sensation. I would be very careful there, because
to mitigate that weight gain, and it’s also going to
well as some other stuff, which we’ll talk about. you might not know you’ve nicked yourself.
help the lymphedema. The lymphatic system
It’s very important for you. WOMAN: responds to activity. It does not respond to
Normal body weight: Not that people who Doctor, as opposed to pains in the arm itself inactivity.Think about patients who have been in
have normal body weight don’t get lymphedema, – I don’t have any pains in my arm – but I do often the hospital in bed for two weeks; if you look at
but increasing your weight or being overweight at enough in the armpit itself. Would that be relative their extremities, they tend to be swollen. That’s
diagnosis increases the risk. I have had people who to lymphedema in some way? because their lymphatic systems are not very active.
normalized their body weight after they came to Exercise is very important; that’s a big, big
TRUDY TURVEY, MS, PT:
me for lymphedema whose lymphedema by and moderator for these things.
How long ago was your surgery?
large was not visible to anyone but them and Signs of lymphedema: Well, often someone
myself. Losing weight makes a big difference in WOMAN: comes in and says, “My arm feels heavy or full.
lymphedema. Ninety-eight. My skin feels a little tight.” Everybody, look at
WOMAN: your wrist on the side. When you look, those of
What about waxing underneath the affected you who don’t have lymphedema, you should be
arm? able to see tendons and veins pretty clearly on both
sides. Sometimes one of the first signs is, “Huh, I
can’t see that tendon on this side, and my vein, it’s
Page 6
not the same.” Don’t ignore it; have someone look If you have lymphedema and you’re exercising, WOMAN:
at it. Also, your jewelry might be tight: “My ring you should have bandages on, or the sleeve. I think On the elbow side, I had no problems, just on
is tighter. My watch is tighter. My sleeve is tighter.” the bandages work better. They’re a nuisance – no the inside.
Something is going on there, so you need to find doubt about it – but I think they work better. Do TRUDY TURVEY, MS, PT:
some way of addressing that. they work for everybody? No. There are a number Probably that wasn’t a custom sleeve – I’ll
Let’s talk about treatment. First of all, good of people in my practice for whom they don’t do repeat that. What you can do is have a piece of
skin care. I already talked about that. Keep your a thing, and neither does massage. They end up in silk sewn in. They can do that at the place where
skin moist, clean; minimize the chance for bacteria sleeves because it’s the only thing that seems to they ordered it, like Juzo or Jobst, depending on
to get in there. The type of treatment that’s most matter, except for the exercise and losing weight. where you got it. People take it to seamstresses.
recognized for lymphedema includes the manual This person who’s treating you should know all That would be the best solution; anything else will
lymphatic drainage. It’s very light massage. of this. When you exercise, if you have just kind of crinkle and be a problem. Yes?
Remember, the capillaries are right underneath the lymphedema, use the bandages.
skin, so the skin being moved by that very light WOMAN:
WOMAN: I was going to answer her question. Maybe the
massage opens those lymphatics. Do you always have to get the bandages put
It’s very important to understand that there sleeve was too long. You can take some of the slack
on you, or can you put them on yourself ? out of it or put something ...
are people out there, including PTs and OTs, who
never have had any specialized training, so they TRUDY TURVEY, MS, PT: TRUDY TURVEY, MS, PT:
decide the best way to treat this person’s swelling is I teach people to do it themselves. It depends It’s a frequent problem, that elbow stuff. It may
to pump the arm up toward the chest, because on whether you’re left- or right-handed. If it’s your be a little too long or not fit you snugly enough at
that’s where all fluid is supposed to go, right? Well, right hand and it’s your left arm, you do pretty the top to stay up. That could be a problem. I
they do it deeply, and to tell you the truth, it doesn’t well. I teach families, whomever. would recommend, if you’re going to get an arm
really work. When you do deep massage, you’re WOMAN: sleeve, to get the silicone tops. For many people,
pushing against those lymphatics. You’re probably I have a question about the compression sleeve. the ones without a top slide down a little bit. It
closing them rather than opening them. I had a sleeve that was custom made. They did the depends on the shape of your arm as to whether
If a therapist who doesn’t have lymphedema measurements and all of that, but the sleeve seems it slides down. You might check that out. Yes?
experience says, “Oh, I can treat this,” you’re going to cut into my inner arm. If it’s a custom-made WOMAN:
to go, “Let’s talk about this a little bit. What kind sleeve, is there any hope that getting a different one My question is along the same line as the
of massage are you going to do? Where were you would help in that particular area, or is there previous question, except that I’m having problems
trained? What kind of training?” Let’s talk about anything I could put in that particular area that right here in the thumb area. It’s all red.
training, all kinds of training. There is Vodder would help?
training. There’s Leduc training. There are different TRUDY TURVEY, MS, PT:
TRUDY TURVEY, MS, PT: Is that a glove, or is that part of the whole
methods. There has been no study whatsoever
When you say it cuts, do you mean it rubs or sleeve?
that says Vodder training is better than Leduc is
it actually is too tight?
better than this. WOMAN:
What you really want to know is whether they WOMAN: It’s one sleeve. It goes from here up to here. It’s
have a good sense of this whole program of It rubs and causes almost an abrasion. It’s not getting sore and red in there. Would I do further
lymphedema management. If not, they won’t do tight at all, but it rubs. I still have the scars from damage if I put something like some cotton or
the rest. They won’t talk to you about compression the last time I wore it, so it’s a problem. something in there?
sleeves and bandages. They won’t talk to you about TRUDY TURVEY, MS, PT:
the exercise research. Be wary; be a good advocate TRUDY TURVEY, MS, PT:
Even though you were measured, it probably I don’t know that you’d do further damage.
for yourself in terms of these people. was not custom. You can get measured. Custom
Let’s talk about compression bandages and First, it’s not fitting you well if you’re red. That’s a
sleeves are for arms that have distorted shapes or concern. There is a type of soft, cotton batting.
sleeves. Along with the massage, you want to have are really, really big, and you don’t look to me like
some type of compression, because the Are you from here?
you qualify. Yes, they measured you, which means
compression does a couple of things. It supports you get a size one, two, three or four. That would WOMAN:
the tissues, and it feels better.The sleeve does mostly be my first question to whoever got it for you. I I’m from Houston.
that. For some people, it minimizes the fluid that’s would take that sleeve and say, “This isn’t working.
going out in the arm, and it maybe treats it a little I need something else,” because a sleeve should not
bit. For other people, what treats better are these cut into you. It should not cause problems, except
bandages that I just spoke to you about. In fact, we at the elbow there are some problems.
know that with those bandages on, particularly
when you exercise, you can increase lymphatic flow
by 15 times its normal rate. Wow, that’s great.
Page 7
TRUDY TURVEY, MS, PT: she got it after a plane ride – one out of 100 WOMAN:
You could try cotton batting, and there are a women. How does she know she got it because of I’m not sure whether this is lymphedema, but
lot of different types of gloves. Some of them have the plane? How does she know she didn’t get it it sounds like it, based on the slide you just showed.
seams in there. Do you have a seam? Sometimes because she lifted her suitcases, because she was If you have tightness in your arm and your wrist is
that is just not the right kind for you. It fits under stress, because she had a lot of salty food, swollen and your watch isn’t fitting anymore, does
everybody differently. because she sat on the plane like this? it just go away? And if it does just go away, is it
The one Margaret has just brought to me – There are a lot of ways to get lymphedema. not lymphedema? Don’t you have some kind of
see, hers is very different. Hers is separate. It’s also Unless someone is really scared, I don’t usually get treatment in order to make the swelling go down,
a lighter weight. With the ones that have the sleeves them [a sleeve]. The same with weight training – like you mentioned?
built in, you’re kind of committed to wearing that if you don’t have lymphedema, no, that’s not where TRUDY TURVEY, MS, PT:
hand piece all of the time, so you can’t take it off I start. Maybe, but I will tell you that for a lot of
for dishes and you can’t take it off to do anything. WOMAN: people, it does go away.
I try to get people two separate pieces. But it I was told specifically that … you have to do
should not be so tight. We have repeated problems WOMAN:
that. It can just go away by itself ?
with that.
If they measured you for a true custom one, TRUDY TURVEY, MS, PT: TRUDY TURVEY, MS, PT:
you really have the right to go back and say, “This I never had a patient who flew who came back It could. I would never tell anybody to not get
is not working for me.” With the standard ones, and said her arm swelled. I just had a patient who it looked at, though, because it might not [go
which are a lot less expensive, you end up having flew all the way to India and back who has away].
more of those problems and trying to solve them. lymphedema who said she didn’t wear anything
and it was fine. Does that mean that out of this WOMAN:
If it’s causing redness anywhere, though, you don’t
whole room one person isn’t going to come back If it does go away by itself, should you take
want that. That’s irritating your skin, and it could
swollen? Maybe, but why? Is it really because you precautions, like wearing the arm sleeve to go
cause breakdown. You definitely want something
were on the plane, or is it because you decided to fly, even though you said you don’t have to wear
different to be done.
lug those suitcases and eat salty food and caffeine it? Do you have to take precautions then? If
For those of you who have to wear sleeves but
and you didn’t hydrate well enough? I don’t know. you’re prone to it once, are you prone to it over
want to be fashion bunnies at the same time, we
I would not recommend that you [wear a sleeve] as and over again?
have something called the [Sliver Sleeve]. Kim is
going to show it to you. Stand up, Kim, and show a preventive, and the reason is that we don’t have TRUDY TURVEY, MS, PT:
yours. A lot of people don’t like that boring beige, any study. We have no study at all that says it Yes. Once you have it, you have it. There is no
and if you want to go out, I just wanted to show prevents it, so that’s a huge market and a lot of cure for lymphedema. Can it be minimized? Can
this to you. This is Kim’s new company, and she money. you actually say, “Well, my arms look pretty close
has some great bookmarks up here to show you WOMAN: to normal”? Yeah, you can definitely get there. But
what stretches you should be doing. … They’re all On that same note, I was told never to lift once you are at risk for lymphedema, you are
adjustable, and you can ask questions about them anything more than 15 pounds. always at risk for lymphedema. These precautions
after. I think they’re pretty cool. Another question? that I’ve given you, you always should have those
TRUDY TURVEY, MS, PT: in your head. Should you wear a sleeve every time
WOMAN: Oh, my gosh. Why don’t you just go to bed? you fly? As I said, I don’t think we know that.
I just had a question. I don’t have lymphedema
WOMAN: People tell people that, but there is no research that
yet, and I hope I don’t, but in lifting weights and
I know. supports doing that.
things like that, should you wear the sleeve when
you’re lifting or doing exercise like that now? TRUDY TURVEY, MS, PT: WOMAN:
I’m sorry. This just drives me crazy. You can I just gained a lot of weight, so I’m not used
TRUDY TURVEY, MS, PT:
lift 15 pounds, but not if you haven’t ever lifted to seeing my arms as large as they are, and it’s hard
My next thing about sleeves. If you have
15 pounds since your surgery. You get yourself for me to tell. Today I had a short-sleeved shirt
lymphedema, you should wear them. If you don’t
strong so that 15 pounds is nothing. That’s the on, and on my surgery arm, the sleeve was tighter
have lymphedema, I don’t know. I have a real thing
whole point of it, and that’s the research that’s than on the other one. What else can I look for
about getting people to wear sleeves if they don’t
coming out. That is not a recommendation to see if that’s a sign of lymphedema or if it’s just
already have lymphedema. It’s like being told to
anymore. It’s a recommendation if you’re just fat? My arm is irritating me, but it has been since
wear one when you fly.
postsurgical and you haven’t had any PT and you I had surgery.
Let’s talk about flying. That recommendation
haven’t healed and you haven’t done any exercise TRUDY TURVEY, MS, PT:
came after a retrospective study, which means they
to get you there. How old is your surgery?
wrote to everybody who had lymphedema on this
list and asked them how they got their WOMAN:
lymphedema. One of them wrote back and said August.
Page 8
TRUDY TURVEY, MS, PT: There is nothing wrong with being your own TRUDY TURVEY, MS, PT:
Was the sleeve tighter on the non-surgical arm? advocate. Don’t take that, “Well, you’re okay.”You Yes, it’s a diuretic. Lasix doesn’t help. Almost
WOMAN: know something is different, right? So act on it. everybody gets Lasix to try. I’m not clear about
It wasn’t as tight. It was tighter, yeah. I mean, The worst that could happen is that somebody why you would swell on the entire left side of your
I’ve gained a lot of weight. It was tighter, but it says, “Yeah, I think this is lymphedema; here is body. That doesn’t make physiological sense in
wasn’t as tight. what we need to do,” and you’ll feel better rather terms of just your cancer surgery. If it’s new and
than it getting worse. they haven’t quite figured it out, I would ask them
TRUDY TURVEY, MS, PT: to do a few more studies to try to find out why,
Are you right-handed or left-handed? WOMAN:
I was diagnosed at 25, and I’m 16 years out. because that’s not normal. Having both of your
WOMAN: (Applause) Sixteen years ago, they didn’t ever tell legs swell on a flight, that’s perfectly normal. Most
I’m right-handed. me not to do these things, and I’ve been doing people do; that I can see. Swelling in your left arm
them for 16 years. In the past six months or so, – that might be lymphedema.
TRUDY TURVEY, MS, PT:
Which is your surgical side? I’m having an extreme amount of swelling on the WOMAN:
left side of my body, which is where my surgery Normal?
WOMAN:
was. It’s not just my arm and my trunk, but all the TRUDY TURVEY, MS, PT:
My left.
way down into my leg, my ankles, my feet, toes, But it’s kind of odd that it would also come
TRUDY TURVEY, MS, PT: the whole shebang, and a lot of joint pain. with swelling in your leg. I’d be asking them to
You should have somebody look at it to see. I’m confused. Could it possibly be figure that out. You have to also remember that if
The best answer would be, “You’re fine,” but it’s lymphedema? Do I need to look at something else? you’re on a new medication, medications can cause
different, isn’t it? When something’s different than My doctor just gave me Lasix. I can’t say it helps. swelling. Arimidex can cause joint pain and some
what it was, that’s when you get it looked at. After flying in yesterday, I have to admit, I swelled swelling. Try to look at everything that’s changed.
Hopefully the answer from somebody who really up like a balloon on the left side of my body, and
knows lymphedema will be, “We’re just going to I’m very uncomfortable. WOMAN:
watch this, no big deal.” I say that a lot. Like, I don’t actually see an oncologist anymore.
TRUDY TURVEY, MS, PT: Three years ago, my oncologist said he didn’t need
“Okay, let’s just try this.”
Did you take the Lasix? to see me anymore. Do you think I should start
WOMAN:
WOMAN: with an oncologist? Should I see a family doctor?
I just didn’t know if there would be any other
Yes. Where do you think I should start?’
obvious signs that I could look for.
TRUDY TURVEY, MS, PT: TRUDY TURVEY, MS, PT:
TRUDY TURVEY, MS, PT:
Did it help? I’d be at the oncologist.
Well, that’s a big obvious sign. The other thing
you could do is measure yourself at home or have WOMAN: WOMAN:
somebody measure you. Measure yourself before No. Regarding the repetitive motion discussion, I
your wrist bones, at your elbow and then maybe TRUDY TURVEY, MS, PT: have a couple of things that I just want your
in the middle of your arm on both sides. If there Lasix does not help lymphedema – that’s opinion on. You were talking about carrying a
is a difference of more than a centimeter, or more number one. purse. What about carrying things like bags down?
than a quarter of an inch, I would want you to be TRUDY TURVEY, MS, PT:
looked at. You’d have to go to your physician. WOMAN:
What is Lasix? That’s okay as long as it doesn’t have the
Now, here is the thing. I have to tell you, I’m kitchen sink in it and your arm is prepared to carry
married to a physician, so I get to say anything I TRUDY TURVEY, MS, PT: it. I think that’s fine.
want about physicians. Our physicians are focused Lasix is like a water pill. It gets rid of water.
on the primary thing, which is the cancer, and that’s WOMAN:
WOMAN: What about pulling something like a suitcase?
as it should be. Many of them are not going to It’s a diuretic.
think a tiny bit of swelling is [a problem]. It’s your You were talking about lifting a suitcase. I understand
body and it’s your life, and I urge you to say, “Well, your point was whether you’re prepared to lift that
I appreciate that you see it that way, but I would kind of weight, but pulling something or pushing
like to see a physical therapist, and please write me something, like sweeping or a vacuum cleaner?
a prescription.” TRUDY TURVEY, MS, PT:
If you’re healed surgically and you’ve been
active and you start slow and you don’t decide
you’re going to clean the whole darn house, yeah.
Those are normal activities, and you should be
able to do them.
Page 9
WOMAN: WOMAN: TRUDY TURVEY, MS, PT:
Or you can use it as an excuse not to do that They just did it in Houston a couple of There is a way to progress push-ups, too. You
anymore. months ago. start on the wall, which is much easier than lifting
TRUDY TURVEY, MS, PT: TRUDY TURVEY, MS, PT: your body weight. Boy, that would be great for
Well, that, too. Let me see if I can just finish That is great. Look at that kind of activity your scapular muscles. What are the problems with
the slides, and then I’ll stick around for any other that people are doing. Golfing: Linda Miller is a exercise? This is where people get into trouble: too
questions. Deep breathing: One of the things the therapist in Philadelphia – those of you in that much, too fast. They don’t warm up and they don’t
lymphatic system responds to – it facilitates it, it area, Linda Miller is, I think, one of the best cool down, so your system doesn’t get a chance to
makes it more active – is deep breathing. When therapists you could go to; I trained under her – get back into an equilibrium. You need to gradually
you are exercising, if you are treating yourself in and she takes her patients golfing. She thinks it’s build your endurance for all activities, both
terms of lymphatic massage, deep breathing is one of the best things for range of motion, muscular and cardiovascular.
really important. It creates a pressure inside the strengthening, you name it. Vigorous, repeated activities when you’re not
chest. It helps to empty the system. It pulls in the Walking. There is a study right now on bench prepared – those examples I gave you were real life.
parasympathetic nervous system, which is your presses to see if it’s a problem, since you’re told Someone who was really fit prior to her cancer
calming one. That’s what facilitates the lymphatic not to do this. Swimming. Dancing. Sherry Lebed decided she was great. She went out and canoed
system versus the sympathetic one, which is your has put out a video on dancing for lymphedema. for eight hours. She could have just done that for
fight-or-flight, let’s get out of here kind of thing. I don’t know if it was her or her relative who had a couple of hours; she didn’t have to do the whole
That’s a really important thing. breast cancer surgery. Anyhow, it’s kind of cool. day. That’s the kind of stuff that happens.
Again, normalize body weight. Exercise: I Triathlons – we have patients doing triathlons. Keep hydrated. Keeping hydrated facilitates
cannot stress it enough. Flexibility exercises, Don’t limit yourself, but do it smart. Figure your lymphatic system, makes it move more fluid.
strengthening exercises, aerobic exercises, core out what it is you need to do to get strong and If you have lymphedema, during these activities,
strengthening exercises – all of those things are flexible, and take care of yourself and figure out do wear your sleeve and/or bandages.
good for you. Everybody in this room should be the best way to do it. Don’t give up something you What’s new? Well, gosh. I wish I could tell you
doing that if for no other reason than it’s love to do. wonderful things are new. I will tell you a couple.
something you can control. It’s a way to hedge your Something called kinesiotaping – anybody know
WOMAN: about this? What’s your experience?
bets about recurrence. It’s going to make you feel Just as an aside, you guys, I ran a marathon
good. It’s going to improve your quality of life, seven months post-surgery, and my arm didn’t get WOMAN:
and it’s going to help with lymphedema if you any worse for the wear. I developed lymphedema four years post-
have it. I heartily recommend that. surgery, and I’ve tried basically everything at this
Well, you all asked me about simple things. TRUDY TURVEY, MS, PT: stage. I tried the kinesiotaping as well. This is in
Let me tell you some of the wild things people Yay! the past couple of months. It had a short-term
are doing. Has anybody seen the dragon boat WOMAN: effect. When I put it on or wore it, you could see
stuff ? Not that I like doing them, but I was told not the difference, but I wouldn’t wear it all of the time.
WOMAN: to do push-ups because of the downward weight- I just continued to wear my sleeve. But it was easy
Yeah. bearing motion. Is that just a myth also? to wear.

TRUDY TURVEY, MS, PT: TRUDY TURVEY, MS, PT: TRUDY TURVEY, MS, PT:
It’s so exciting. These women in Canada, all Yeah, I don’t see why you can’t do push-ups. I We need more research in this. Let me explain
breast cancer survivors, some with lymphedema, wouldn’t tell you to do 20 to start, but ... to people. Kinesiotaping is a way of taping, and
some not – Susan Harris started this with one of you tape along the lines of where you want the
WOMAN:
her patients and trained people to row these dragon lymphatic flow to go. Margaret’s experience was
Oh, I wasn’t.
boats and compete. They did progressive resistive that it helped while it was on. Did it last for any
training, flexibility and aerobic activity, and you time after you took the tape off, Margaret?
know what? No one’s lymphedema is worsening, I’ve had a couple of patients I’ve tried it on.
and no one got lymphedema doing this. There are One was a post-surgical total knee replacement
now, I think, over 30 dragon boat teams in Canada, with a huge amount of swelling. I also did a
and it’s gotten very big in Australia, I’m told – over massage. But I couldn’t keep the bandages on her,
31 teams. so I thought, “Oh, heck, I’ll just try this.” I was
absolutely amazed. The next day, she came in and
it was probably down a half-inch. Her swelling was
a little different from lymphedema swelling.

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I just tried it on another woman whose The other big thing is that in Australia and a WOMAN:
swelling was the result of an infection, so it was number of countries they have used benzopyrenes, How much celery are you talking about?
relatively new swelling. While it didn’t change the otherwise known as coumarin – not Coumadin, (Laughter)
girth, what it changed was the induration, or the which many of you have been or are on, but TRUDY TURVEY, MS, PT:
amount of cellular debris, so there was some coumarin. This helps to break down that cellular I have no idea. I only throw that out, as I
change in the lymphatic flow. stuff and really helps lymphatic flow. thought, “Well, that’s very interesting that that’s
My sense is that we need some more research. Unfortunately, there were a lot of liver toxicity in there.” There is no study. There is nothing to
It may be that the extent of fibrosis in the arm is issues. There are foods that are high in coumarin: tell you. You might turn green before it does
the dictator of how well the kinesiotaping works. celery, for example. I thought to myself, “I wonder anything, so I don’t really know. …
I don’t know, but I think it’s an interesting area that if that would have the same effect as the coumarin
we’re looking at. itself.” You can get coumarin through some LANITA MOSS:
There is a physician in Arkansas looking at pharmacy in Texas. You would have a very different A quick housekeeping, guys, because we’re
laser and infrared. It’s a preliminary study; there time getting a physician to prescribe it for you here, running over. Thank you, Trudy, very much. It was
are no results. I did have a patient who used however, because of its toxicity. very informative.
infrared on her leg swelling. She felt it helped a We’re looking more and more. A new research TRUDY TURVEY, MS, PT:
great deal. I have mixed feelings about it, because group that’s been established is feeling like many Thank you. Great. Thank you. If anybody has
I continue to treat her. I’m not really sure. Then of you with lymphedema do: that there has got to any questions, I’ll be happy to be here.
again, only she knew how her leg felt. be some other way to do this. So, with hope, we [END OF TRANSCRIPT]
Then there are homeopathic remedies. Does may see that change.
anyone have any experience with anything that they
felt worked? There are a couple of things. They
are doing a study at [University of Wisconsin]-
Madison where they’re looking at horse chestnut,
which has been used in Europe for years for venous
insufficiency…

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