What is lymphedema?

A disease impacting millions, unknown by many.

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What is lymphedema?

Lymphedema (pronounced [lim-fa-dee-mah]) is a chronic condition where protein rich fluid called lymph or lymphatic fluid collects in the tissues just below the skin causing swelling. Your lymphatic system runs throughout your body and is like a plumbing system for your lymph fluid.

When this system does not work properly, whether it was poorly developed from birth, or damaged from surgery, radiation, or a trauma, your body cannot effectively transport lymph fluid. When transport is stopped and lymph fluid cannot drain properly, it causes swelling where the drainage is disrupted. This swelling can be in any part of the body, most often in the arms and legs, but also the breast or chest wall, head and neck, or genitals.

When the fluid remains stagnant in the tissue, the body recognizes this excess protein in the tissue as “foreign” and wants to “wall off” this area to protect it. This can cause a state of inflammation, which then causes fibrosis (scar tissue). That fibrosis can feel hard and tight, and makes it more difficult for the fluid to be moved out of the area. It also puts patients at higher risk of wounds healing slowly and infections called cellulitis or lymphangitis.


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What is the Lymphatic System?

Whenever we hear “lymph…”, most of us immediately think of lymph nodes. We know that we have them in the neck and groin, but not what they do.

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What is the Lymphatic System?

Whenever we hear “lymph…”, most of us immediately think of lymph nodes. We know that we have them in the neck and groin, for example, and that they can become swollen when inflamed. This is certainly true but not the whole story. The lymph nodes, which are present throughout our body (there are several hundred of them) are part of an interconnected lymphatic system.

Your lymphatic system runs throughout your body and runs in parallel to your venous system. You can think of the lymphatic system as the "garbage disposal" system of the body. Your lymphatic system collects any fluid which leaks out of your capillaries, filters and concentrates it through the lymph nodes, and then returns it back to your blood circulation. Your lymphatic system serves an important immune role to help prevent spread of infection or even cancer cells. Your lymph system is essential and collects up to two liters fluid a day. Without a functioning lymphatic system, you could not live. Lymphedema occurs when the lymphatic system is partially defective.

To read more about your lymphatic system, click here.


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What does therapy for lymphedema look like?

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What does therapy for lymphedema look like?

Since lymphedema is different for everyone, management of symptoms can differ slightly from person to person. You want to establish therapy under care of a Certified Lymphedema Therapist (CLT) and have them develop a plan specially for you.

The gold standard for lymphedema management consists of Complete Decongestive Therapy (CDT). CDT is made up of four components, manual lymph drainage (MLD) massage, compression therapy, exercise, and meticulous skin care. All of these pieces work together to give you the best possible outcomes.

It may seem overwhelming at first, but many people find that they can quickly create a routine for their care to make it work in their lives. We are here to help you if you have any questions as well.

Click here for more information about CDT and lymphedema management. 


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What is Manual Lymphatic Drainage (MLD)?

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What is Manual Lymphatic Drainage (MLD)?

Manual Lymph Drainage (MLD) is a light, skin stretching massage that is designed to help move lymph fluid back into remaining lymph vessels and reroute it out of your swollen limb. It is a very light and gentle massage that should not be confused with a traditional massage you may receive at a spa.

Therapy is applied to your unaffected areas first, making it possible for the fluid to move out of the affected area, or as we say, “decongest.” A typical session of MLD may last 45 minutes or more, and of that time only 1/3 of the therapy would be on the involved limb.  

Phase I is the intensive phase and lasts 3-8 weeks. Typically you will visit your therapist 2-5 times weekly during the intensive phase. You will have MLD and bandaging, along with skin care, education, and exercise.

Once your therapist has reduced all the fluid possible out from your affected body, you will enter stage II maintenance phase. This phase lasts lifelong, and you will use compression to prevent reaccumulation of the lymphedema, along with skin care, exercise, and self massage. Your therapist will guide you through these steps and help give you the proper tools and education to help you manage your lymphedema, maximize your quality of life, and reduce your risk of complications.

MLD can be a very important part of your lymphedema management, but as with all medical treatments, you should talk to your CLT or healthcare professional about an individual plan for you.  

For more information about MLD, click here. 


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Is there a cure for lymphedema?

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Is there a cure for lymphedema?

Lymphedema has no known cure, but its symptoms can be managed. It’s important to know as much as possible about the condition so you can manage your lymphedema as effectively as possible.  

One subset of lymphedema patients that may experience great improvements are diagnosed with Phlebolymphedema, which is a condition where the patient has severe chronic venous disease (CVD) and the lymphatics become overwhelmed. Some of these patients have normal lymphatics, so their symptoms will improve as long as they are compliant with compression. Occasionally, phlebolymphedema patients have an underlying medical condition or medication that is exacerbating their CVD. These patients may have great improvement or correction of their condition if the underlying etiology is addressed.

Click here to read more about management options. 


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How do I know if the person I am seeing is trained to treat lymphedema?

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How do I know if the person I am seeing is trained to treat lymphedema?

Most Certified Lymphedema Therapists (CLT) will list the “CLT” credentials at the end of their name. You will sometimes see them listed as CLT-LANA, meaning that they took an additional credentialing test offered by the Lymphology Association of North America (LANA). 

Remember that you are your own best advocate and it’s ok to ask your therapist questions about their training and qualifications. It means that you are taking an active role in your care, and your therapist should appreciate that. If you want to do your do diligence after you speak with a new potential therapist, you can contact the training schools to verify that the therapist graduated from the program.

You can find a list of CLTs that are members of the LymphCare program here, or find information about LANA and the lymphedema training schools on our resources page


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What is a Certified Lymphedema Therapist (CLT)?

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What is a Certified Lymphedema Therapist (CLT)?

A Certified Lymphedema Therapist is someone who has completed a training course that is specific for lymphedema. According to the Lymphology Association of North America (LANA), courses should have a minimum of 135 hours of coursework in Complete Decongestive Therapy (CDT) with 1/3 consisting of theoretical instruction in anatomy and physiology of the lymphatics, and 2/3 being significant hands on instruction. While occupational and physical therapists are among some of the most common CLTs, there are many other medical fields that can be accepted for a CLT course. These include: PTA, COTA, MT, SLP, RN, MD, DO, DC, PA, and ATC.

 

You can find out more information about the lymphedema training schools from The North American Lymphedema Education Association (NALEA).


RELEVANT QUESTIONS?

Who should diagnose me?

It can sometimes be difficult to get a diagnosis of lymphedema...

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Who should diagnose me?

In the U.S., there are few doctors specialized in lymphedema that can diagnose and treat you. If your doctor thinks you may have lymphedema, it is important that they write a prescription for you to be evaluated by a Certified Lymphedema Therapist (CLT). You will need a prescription that states, “Evaluate and treat for lymphedema of [the body part].”

It is important to note that while CLTs are not allowed to diagnose conditions in the U.S., they can often aide the physician in clarifying the correct medical diagnosis. Finding a CLT can be challenging, but it is important to find a qualified practitioner.


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What should I do after I get diagnosed with lymphedema?

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What should I do after I get diagnosed with lymphedema?

If you are diagnosed with lymphedema, you should see a Certified Lymphedema Therapist (CLT) for evaluation and therapy. See the Healthcare Professional and Fitter Finder page to find a CLT near you.

Until you can get in to see your CLT, try to keep the affected body part clean and dry. Use a good moisturizer to prevent skin dryness and cracking. Dry, cracked skin can become an entry point for bacteria and increase your risk of infection. You should also try to elevate the affected body part if possible. For example, if you are newly diagnosed with arm lymphedema and you are waiting to get in and see your CLT, try to sleep with the arm raised above heart level by keeping it on a soft pillow. This can help reduce your swelling at night. Keeping your swelling down can help reduce your risk of complications, but does not replace the need for you to see a CLT.


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How do I know what type of lymphedema garment is correct for me?

There are many types of compression products that are available for lymphedema.

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How do I know what type of lymphedema garment is correct for me?

Compression is used to help move extra fluid out of the limb, and to keep it from coming back into the limb. The idea behind compression therapy is to assist the tissue by applying pressure from the outside, which allows the fluid to flow.

Lymph fluid contains proteins, and the goal of therapy is always to help reduce this fluid and to keep it from reaccumulating. The proteins in the lymph fluid increase your infection risk, and cause an inflammatory response over time that can lead to your skin becoming hard and fibrotic, as well as inducing your body to make extra fatty tissue, leading to permanent limb enlargement. Being compliant with compression therapy long term can greatly reduce your risk of complications. Getting therapy quickly after you notice swelling, rather than waiting months or years after you notice the problem, can also greatly help reduce your risk of complications.

There are many different types of compression products that are available for lymphedema. Your CLT or healthcare professional should help you decide which garment or garments are appropriate for you to use. It's good to know about all of the options available so that you can take an active part in the conversation. 

Click here to learn more about types of compression. 


RELEVANT QUESTIONS?

Are there other types of swelling?

There are other types of swelling that should not be forgotten about.

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Are there other types of swelling?

There are other types of swelling that should not be forgotten about.

  1. Lipedema: Painful, chronic disorder which results in the accumulation of fatty tissue in the legs and sometimes in the arms. Lipedema can progress to develop an edematous component.
  2. Lipolymphedema: When lipedema progresses and the fat globules enlarge to the point they can impede and damage lymphatic flow, creating a secondary lymphedema component.
  3. Phlebolymphedema: A condition of mixed venous and lymphatic insufficiency.


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I am a cancer patient, how can I assess my risk for lymphedema?

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I am a cancer patient, how can I assess my risk for lymphedema?

Cancer patients have variable risks for lymphedema depending on their type of surgery, time since surgery (months / years), and if radiation therapy was done. 

General risks for cancer patients are:

  1. Surgery.  Surgery increases your risk because it disrupts lymph vessels as surgeons access the body to remove the cancer. The more extensive the surgery, the greater the risk, as likely more lymph nodes and lymph vessels were disrupted.
      
    If a sentinel lymph node biopsy was performed, this elevates your risk a bit more. If the cancer is found in these removed nodes, the oncologist and surgeon will need to decide if further lymph node dissection is needed. Results from sentinel node biopsy will also help guide decisions on chemotherapy and radiation.

    If you have a complete lymph node dissection, this disrupts many more lymphatic vessels. You have a higher risk of developing lymphedema if you have multiple lymph nodes removed (full lymph node dissection) than if you just have a few nodes removed (sentinel node biopsy). 

  2. Radiation therapy. Radiation therapy kills cancer cells, but it can also damage the small fragile lymph vessels. Radiation therapy is another independent risk factor for lymphedema. 

  3. Tumor size.  If you have a tumor (benign or malignant), it can grow and put pressure on the body around it.  This can include the tumor growing into or pressing on the nerves and lymphatics around it.  Cancer patients can develop lymphedema from the tumor growing and putting pressure on the lymphatics and sometimes this can be the first symptom that something is wrong. 

If you have both surgery and radiation you have greater risk of developing lymphedema than if you have either alone.

It is important to understand that there is no guarantee that you can prevent lymphedema if you are at risk for it. Early diagnosis and therapy are the key to helping prevent long term complications.


RELEVANT QUESTIONS?

Can I prevent lymphedema?

It is important to understand that there is no guarantee that you can prevent lymphedema if you are at risk for it.

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Can I prevent lymphedema?

It is important to understand that there is no guarantee that you can prevent lymphedema if you are at risk for it. You should ask your physician to refer you to a certified lymphedema therapist (CLT) to discuss your individual case. Your CLT will screen you for lymphedema by taking baseline measurements of at-risk and unaffected limbs to keep in your records. You can even request to put these measurements in your LymphCare profile! That way if you start to notice swelling or any signs and symptoms of lymphedema, you will know who to call immediately.

Symptoms of lymphedema from cancer treatment can start even before there is obvious swelling. If you have any of the symptoms below, see your caregiver for evaluation to see if you have lymphedema. Early management of surgery related lymphedema can reduce your risk of complications. 

Symptoms include:

  • Heavy feeling to your limb or body area, or aching
  • Swelling / edema of the limb or area  
  • Numbness or tingling sensation to the area
  • A limb that gets tired more easily with use


RELEVANT QUESTIONS?

What should I do if I think I have an infection?

Patients with lymphedema have a greater risk of getting infections.

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What should I do if I think I have an infection?

Patients with lymphedema have a greater risk of getting infections. If you think you might have an infection, follow these guidelines:

  1. Call your clinician immediately or go to the ER for evaluation.
  2. Draw a line around the red area and note the date and time so you can track if it is spreading, and if so, how fast. You can also keep track of this in the Infection Tracker section of your diary once you are logged into the LymphCare Community.
  3. Monitor the area closely. Make sure you check it several times a day until treatment has it under control and improving.
  4. Stop any MLD. You should stop self-MLD until your clinician instructs you that it is ok to start again. Self-MLD may spread infection and inflammation into you lymphatics and create a more difficult situation to manage. Experts vary in their opinion, but many experts like to wait 3-4 weeks after infection is treated before restarting any MLD therapy.
  5. Antibiotics. If you have an infection and have lymphedema your clinician may prescribe antibiotics. If you are prone to infections or are planning to travel somewhere far from a hospital, or to another country, it would be a good idea to talk to your doctor about getting a preventative  prescription.
  6. Tell your clinician if you have any increase in your swelling. You may want to follow up with your CLT after the infection has cleared to see if you to come in for therapy. 

Click here to learn more about infections and lymphedema. 

Does my risk for lymphedema diminish over time?

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Does my risk for lymphedema diminish over time?

You have a lifelong risk for development of lymphedema anytime there is damage to the lymphatics (i.e. surgery, radiation, or trauma). That said, the longer you go after you have damage to your lymphatics without symptoms, there is possibly less risk you will ever develop symptoms. Nonetheless, there is always some level of risk if you have damaged lymphatics. For instance, radiation therapy induced lymphedema often shows up 1-2 years after treatment, but can manifest even 10 years after therapy is completed.

It’s important for you to remember that you always have some risk and occasionally patients will develop symptoms many years after the damage occurs. Because of this, it is a good idea to be diligent, know the signs and symptoms of lymphedema, and try to live by the healthy habits that may help you reduce your risk. As always, you should speak with your CLT about specific recommendations for you. 

You can read more about healthy habits to reduce your risk here. 


RELEVANT QUESTIONS?

What are some of the contraindications for having MLD performed?

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What are some of the contraindications for having MLD performed?

There are medical reasons that MLD might not be used, called contraindications, so it’s important to see your CLT and discuss any new changes in your medical history before you start therapy each time. Your therapist will want to make sure that you don’t have any other diseases that would be affected if fluid is moved back towards your heart.

Medical issues like congestive heart failure (CHF) and renal (kidney) failure may be reasons that you cannot receive MLD. Other contraindications include acute infections or active blood clots (DVTs). These contraindications will be individually assessed by your CLT and your medical professionals. 


RELEVANT QUESTIONS?

Are there prescription meds that help with lymphedema?

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Are there prescription meds that help with lymphedema?

There are no medications that are proven to cure or improve lymphedema. Diuretics are often used to help reduce edema or swelling. In the case of lymphedema, however, diuretics can worsen lymphedema for some patients. 

Diuretics can remove fluid, but increase the protein concentration of the lymph fluid. If the protein concentration is increased, this can actually speed up the inflammatory process and make things worse.  Diuretics are not good at reducing the swelling seen in lymphedema as the proteins hold onto water molecules due to a principle called oncotic pressure (the proteins have charges on them and these charges hold onto water molecules).

This is why you need MLD to help move the fluid and proteins into the remaining functioning lymphatics and why compression alone rarely improves lymphedema. You should not take diuretics for pure lymphedema diagnosis, unless you have other medical conditions, which would necessitate or benefit from use of a diuretic. Talk to your healthcare professional if you have any questions about your prescriptions. 


RELEVANT QUESTIONS?

Are there surgical options that can cure lymphedema?

There are several different surgical techniques used to treat lymphedema for special cases.

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Are there surgical options that can cure lymphedema?

There are several different surgical techniques used to treat lymphedema for special cases. Most of these surgeries are performed by plastic surgeons who have highly specialized skills and experience in these techniques. Surgery for lymphedema is still very new and surgeons continue to improve their techniques and reduce the risk of complications. Before considering any surgical options, make sure to speak with your certified lymphedema therapist, healthcare providers, and the specially trained surgeons about your individual case. Surgical treatments that are done in lymphedema include:

  1. Lymph node transplant. Here, specially trained surgeons take a healthy lymph node and implant it near the damaged lymphatics. The theory is that the body will connect to the transplanted lymph node and grow lymphatics to connect to it.
  2. Reductive techniques. These are techniques to remove fatty and fibrotic tissues from lymphedema patients. These techniques do not cure lymphedema but can in some cases reduce limb size. MLD and use of gradient compression must be continued to prevent reaccumulation of fluid. Procedures include highly specialized liposuction done with special instruments and performed by specially trained surgeons. Traditional liposuction techniques, however, are contraindicated for management of lymphedema. Direct excision can also be done but this is generally limited to excision of very large lobules in chronic cases. 
  3. Lymphovenous anastomosis. Exact surgical techniques vary, but the principle is to carefully dissect and connect a functioning lymph node to a vein and drain the lymph fluid from the lymph node directly into the vein. 
  4. Lymphatic vessel repair. This is a microsurgery technique. An example of a patient that might benefit from this procedure would be a young, healthy patient with a large wound that cut through a lymph vessel. If the lymphatic vessel is large enough it can sometimes be repaired through microsurgery by a highly specialized plastic surgeon.


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