Vol. 17 Issue 14
Learning About Lymphedema
ADVANCE went to an expert for information about current treatments
To find out about current trends in lymphedema treatment, ADVANCE conducted an interview this month with Debra Szalwinski, PT, clinical director at Tidewater Physical Therapy Inc., Newport News, VA, and certified manual drainage therapist. A PT since 1984, Szalwinski joined Tidewater as a staff therapist in 1990 and became clinical director just a year later.
ADVANCE: In your role as clinical director, what are your basic duties and responsibilities?
Szalwinski: I run the overall clinic, which includes 14 employees. We're a standard outpatient orthopedic clinic that treats a wide variety of patients. But within the clinic we also have a Lymphedema Treatment Center that I supervise.
ADVANCE: Can you tell me how many staff members are dedicated to the lymphedema clinic?
Szalwinski: Three. Two PTs and a PTA.
ADVANCE: Does that number include yourself?
Szalwinski: I do lymphedema evaluations, re-evaluations and run the program. But I don't do hands-on treatment anymore. And there is another PT on staff who does the same thing that I do in regard to the lymphedema clinic. So we really have two part-time staff members, one PT and one PTA, who conduct the evaluations. We do re-evaluations every 30 days after we stop seeing a patient. And the other two staff members do the actual hands-on treatment, which is decongestive therapy.
ADVANCE: Among the overall number of patients who come to Tidewater for treatment, could you estimate the percentage who receive lymphedema treatment?
Szalwinski: That's actually complicated to answer. There are therapists here who focus only on lymphedema and see six patients each day. Their schedules are always full, and they treat each patient for a period of time ranging from an hour and 15 minutes to an hour and a half. We also have lymphedema patients referred to us who don't necessarily need the full program. They just need education or garment advice, and they would be seen by a regular therapist. All of us are lymphedema therapists, but there are three who are dedicated mainly to lymphedema treatment. We also get many vascular edema patients, because we've kind of become known in the area as swelling experts. So we do a lot of wound care and see patients who don't have true lymphedema. If I took all of the patients with some type of swelling and put them together, it's probably about 15 percent of our overall patient population.
ADVANCE: Other than cancer treatment impacting the lymph nodes, what are some other causes of lymphedema?
Szalwinski: Only about 40 percent of our lymphedema patients are oncological; in other words people who have had their lymph nodes dissected secondary to cancer treatment. The rest of the patients could have lymphedema from a variety of causes. Primary lymphedema is something that people can be born with because they don't have a normal lymphatic system.
There are actually three different kinds of primary lymphedema. One is congenital primary lymphedema, which is at birth, so we see some children. Then there's primary lymphedema praecox, which develops during the teen years, usually when the person is going through puberty. Another kind of primary lymphedema is called lymphedema tarda, and that shows up most often in women in their 30s.
We also see traumatic-related lymphedemas, which could be caused by a great variety of traumasanything from a total knee replacement to a severe ankle injury or fracture. All of these are traumatic in origin and have caused damage to their lymphatics, with lymphedema affecting the lower extremity. Another example [of lymphedema caused by something besides cancer treatment] would be somebody who has had a deep vein thrombosis. The inflammation that occurs in the vein can also damage the adjoining lymph vessel. The DVT may be resolved but the person will be left with chronic swelling.
So there's a huge variety of situations that could start a lymphedema episode. Some people may have already not had very efficient draining lymphatics. Those people might say, "Why did this happen to me?" It's the same reason why one person might get varicose veins and the next person doesn'tjust because that's the way their veins work and are made. Some people can just be more predisposed to swelling if they have damage to their lymphatics. There are clinics entirely devoted to patients whose lymphedema was caused by cancer treatment that's just not how our clinic works.
ADVANCE: Among patients who present with lymphedema, apart from swelling being an obvious symptom, what are other manifestations of it?
Szalwinski: For one thing, people with chronic swelling are susceptible to infection, specifically cellulitis of the arm and leg, which can be a very serious complication.
In the lower extremity, people with chronic swelling also often develop skin problems such as ulceration. Then of course there are problems with pain, heaviness, weakness and functional limitations due to the size and weight of the extremity.
ADVANCE: Could you provide details of how lymphedema treatment is provided at your clinic?
Szalwinski: Yes, we provide complex decongestive physical therapy, which is the full program as developed in Europe and Australia. This includes manual lymph drainage consisting of about 45 minutes of hands-on stimulation of the lymphatic system by the lymphedema therapist. That is followed with medical compression bandaging, a layering technique, with low-stretch bandages. It's a bulky wrap, but very effective at stimulating lymphatic drainage. Patients are wrapped on their first treatment day and stay wrapped the entire time they're seeing us, which could be anywhere from two and four weeks.
Then the third component of our program is educational, where we teach patients about skin care and infection prevention. We educate the patient on how to self-wrap, or a family member on how to wrap the patient. We also teach self manual lymph drainage and of course all the do's and don'tsthings to be careful of to avoid exacerbating their condition. In addition, we teach lymphedema exercises, which represent another tool for patients to stimulate their own lymph system when they're not seeing us anymore.
ADVANCE: After the two to four weeks is over, would typical lymphedema patients be expected to keep the wraps on throughout their waking hours?
Szalwinski: When patients get to the end of their program and their swelling has come down as much as it's going to, sometimes that's all the way down and sometimes a plateau is hit, they're fitted with compression garments. These are either sleeves or compression stockings, of which there is a huge variety including knee-high, thigh-high and waist-high types of garments. It's actually an art itself to get someone into the right garment. But they wear the garment during the day, and some people have to continue to wrap at night. That's very variable. People that have had lymph nodes removed almost always have to do some kind of wrapping at night long-term. Some people wrap every other night. There are night-compression devices now being made by four different big manufacturers that take the place of bandaging and make it easier for people to be compliant.
ADVANCE: At your clinic, is there a difference in the type of treatment provided to a lymphedema patient who is there for oncological reasons as opposed to other reasons?
Szalwinski: The treatment is not different. The educational process varies because with the people who are there for oncological reasons, we have a really clear-cut idea of why they are swelling. And when we teach them what they need to do to maintain the health of their limb, it's sometimes more involved. We're better at predicting what they're going to have to do long-term. The other patients are easier to treat, if for example they started out with a vascular insufficiency that has turned into more of a lymphedema. Their swelling comes down faster and they often don't have to do as extensive self-management to maintain the reduction.
ADVANCE: How would you describe the general approach or mentality of patients who come to Tidewater for lymphedema treatment?
Szalwinski: Most of them are extremely grateful to have found a location where they can be helped. The situation is getting much better than when I first started providing lymphedema treatment nine years ago, but in the past people couldn't believe how many years they had to deal with swelling before finally [being referred to a place that could help them]. So many physicians were unaware that an effective treatment existed for lymphedema. And the fact that it's such an effective treatment is one of the reasons why it's so fun to practice. Almost every patient responds. We tell them the first day that [noticeable improvement] is probably going to happen. But they're often amazed anyway by how quickly they see a difference, usually in just a couple days.
ADVANCE: From your experience, do patients generally continue to be compliant after their treatment has finished?
Szalwinski: That definitely varies. I would say the oncological patients are often compliant. Some of our other patients are compliant for a while and then kind of fall off the wagon before coming back to see us again. It is a lot to do, and patients sometimes think they don't have to do it all and will gradually [become less committed to it]. Then they swell up again, and sometimes it takes that [repeat incidence] for them to realize how important it is to be compliant.
ADVANCE: Any other thoughts on the subject of current lymphedema treatment?
Szalwinski: We're noticing in the community of lymphedema now that many hospitals and facilities are feeling the pressure to provide lymphedema treatment because it has become so much more recognized as appropriate and effective. If they don't provide it, they don't have the competitive edge, can't get the referrals from certain insurance companies, that kind of thing.
So we're finding now that there are therapists at facilities who say they do lymphedema work, but aren't truly certified lymphedema therapists. They don't provide what we call full program, which consists of all those components I mentioned. They may do just manual lymph drainage but not wrap or teach the patient how to wrap. So we're starting to see more patients who are under the impression they received lymphedema treatment elsewhere and it wasn't successful, when in reality they just didn't receive the full program. That is a new trend in the world of lymphedema, and it does cause a little frustration [as a therapist] because if you're going to do this, you have to commit the time to do all components of it or it's not really effective. As I mentioned before, not all of our patients require full program, but we have the capability to provide it if they do.
ADVANCE: And patients get frustrated as well because they think they've tried the treatment already and it just doesn't work?
Szalwinski: That's exactly what happens. I actually saw a woman yesterday who told me her doctor thought she really needed to come here but that in her opinion, she had done [lymphedema treatment] already and it didn't work very well. With further questioning about what she had done, I found out that she really hadn't been through full decongestion treatment. So I had to do a lot of talking to convince her to [enter into our program].
Brian W. Ferrie is senior associate editor at ADVANCE and can be reached at firstname.lastname@example.org