Oct-Dec 2003: LE Symptoms and Deep Vein Thrombus

LymphLink Question Corner - Archived from Oct-Dec 2003
Steve Norton, MLD/CDT Instructor, CLT-LANA

Q:  I have been experiencing swelling in both of my feet (toes and top of the foot) and ankles for several months now, but have not had other serious symptoms which would motivate me to seek medical attention. The swelling seems to be better in the morning and worse towards the end of the day, appearing nearly symmetrical at all times. Should I be concerned? Is this lymphedema? What is the most appropriate next step for me to take? Also, are there any natural therapies or herbs that I could take to reduce the edema? I have heard about holistic remedies for lymphatic congestion.

A:  Thank you for seeking advice for this very important question. As lymphedema specialists, we are commonly confronted with concerns and subjective reports similar to yours. It is of paramount importance that we (the clinicians) "differentiate" your signs and symptoms from others that also may create swelling of the legs and feet. For a lymphedema specialist to proceed with treatment of any so-called "swelling" without more diagnostic information could, indeed, manifest serious and potential lethal consequences for some people. What you are describing does not necessarily sound like classic lymphedema.

Regardless, it is always advisable that you first consult a physician with a special interest in Lymphology. Of course such resources currently are difficult to find and are definitely not available in all regions of the country. Take heart, most internists or vascular specialists should be motivated to rule out obvious serious medical problems such as cancers, blood clots and congestive heart failure. Depending upon your age, general heath, history of heart disease, weight and other important factors, a well-trained physician should be able to correctly diagnose the source of your problem. If the swelling is indeed lymphedema, most patients may still find limited options for care. Organizations like the NLN are on a mission to change this landscape for persons with pure lymphedema and other swelling problems. Please feel free to contact the NLN directly for a list of active, interested physicians who are taking up Lymphology as a sub-specialty.

In regard to the "natural remedies approach" to your swelling, I would caution against pursuing this track exclusively, because swelling may indicate serious illness, requiring immediate medical intervention. I would suggest that you first seek definitive answers and use holistic remedies as supportive therapy only versus the sole approach. I recently consulted with a patient who had obvious signs of cardiac edema resulting from heart failure. Her labored breathing and "wet" lung sounds were mistakenly self-diagnosed as bronchitis and she had been treating herself with natural healing techniques. I suggested that she immediately consult her physician to rule out cardio-pulmonary distress. Unfortunately, she had been neglecting her congestive heart failure and passed away within days when her "bronchitis" worsened.

Q:  I have a history of breast cancer and am pleased to say that I received a minimally invasive surgical technique: lumpectomy and sentinel node dissection followed by radiation therapy. I thought that I had a very low chance of developing lymphedema but have recently developed a heavy feeling in my arm and a tight feeling in my clothes. Am I experiencing the onset of lymphedema? Should I be concerned? What is the best course of action? Could my cancer be the cause?

A:  Certainly what you are describing is quite typical of what many in Lymphology have termed "stage 0," or the pre-stage of lymphedema. Before concluding this however, it is always prudent to rule out primary concerns such as current cancer activity, which could create subtle blockages in your lymphatic circulation and cause the symptoms you are describing. Assuming this is not the case and your oncologist clears you for conventional therapy (i.e. PT, OT, lymphedema therapy), the best course of action is controversial and is oftentimes based upon each therapist's clinically and experientially based treatment plans.

The pre-stage (stage 0) of lymphedema simply means that you are experiencing subtle feelings and symptoms which may only be obvious to you and may not be clearly palpable, measurable, or visible to medical professionals. However, we do know with certainty that any surgical trauma to lymph nodes, however slight they may be, reduce the transport capacity or volume of fluid circulated in the region of the body disturbed by surgery/ radiation therapy. What we also know from histological (tissue) studies is that radiation therapy has a direct and disabling affect on lymph nodes by scarring and shrinking nodal tissue and a concomitant indirect effect on lymphatic vessels by entrapping them with scarred surrounding tissues (fat and connective tissue). This latent affect is prolonged and can persist for many months following cancer treatment.

It stands to reason that with decreased transport capacity due to injured regional lymphatics and subjective complaints, therapeutic intervention of some kind is sensible. Again, type of modality and intensity of approach are the issues in question. During exercise or strenuous activity, especially involving your involved arm, I would recommend a light support compression sleeve, (Compression Class 1, 20-30mm/hg) correctly measured, fit and supported by a physician's prescription. Multi-layered compression bandaging, as used in more advanced lymphedema, is sensible but may have an adverse affect in this early stage of lymphedema due to the challenges of establishing safe gradient pressure. Remove the compression garment following a cool down period after exercise or strain and observe the feeling (presence or absence of heaviness and fullness) in your arm.

Some practitioners believe in applying MLD (Manual Lymph Drainage) as a preventative measure to assist the weakened local lymphatic circulation and to promote collateral flow. This is a very sensible approach and one that would be ideal for all persons with a history or lymph node dissection. However, insurance is unlikely to pay at this time, so cash pay will most likely be your only option.

Lastly, please do not disregard your symptoms, expecting them to subside. Evidence suggests that you will progress into the next stage (stage 1) of lymphedema should you not alter your daily routine to take care of this arm. Don't be alarmed, stage 1 lymphedema is quite reversible (although incurable) and with expert medical advisement, you can maintain at a very controlled level for a lifetime. Please contact the NLN for a local physician specialist and therapist to answer your questions and monitor your arm.

Q:  I have longstanding lymphedema secondary to a deep vein thrombus. After doing some research and reading, I don't understand why my legs seem to be showing signs not commonly described as lymphedema, such as draining wounds, brownish discoloration around my ankles, pain and achiness. I do exhibit signs such as deep hardened folds on both ankles and papillomas on the skin, which leak. Do I have lymphedema, venous edema, or both? I'm confused and concerned.

A:  What you are describing sounds like a combination of both venous and lymphatic disease, sometimes referred to as phlebo-lymphostatic edema. What this simply means is that your history of vein thrombus (DVT) caused a lot of damage to your deep veins, which, in turn, created venous edema. However, without adequate treatment usually in the form of daily high quality compression stocking support, your venous edema finally has overwhelmed your adjacent lymphatic vessels. The lymphatic system has a built in mechanism "safety valve function" which assists this venous edema imbalance by evacuating excess water loads. This extra load does, over time, tax the local lymphatic system and, at some point, they too become diseased. This downward spiral can be accelerated by infections such as phlebitis and cellulitis, dependent position (inactivity) and obesity.

The brownish discoloration is called hemosiderin staining and is a pure vein disease problem. It often indicates very poor blood circulation and high pressure in the area of discoloration. Wounds develop due to poor cellular nutrition and delayed healing following longstanding swelling and minor injury. In regard to the lymphedema component, hardening of the tissues, thick wart-like skin patches and or square toes and folds are classic signs that your lymphatic system has failed. Treatment for combined diagnoses like yours is the same as for pure lymphedema. Complete Decongestive Therapy (CDT) should be highly successful and should return your legs to a much healthier state. The reason why I say "should" is because the long-term success of this therapy depends on a partnership between you and your therapist/physician team. If you are committed to working with them by managing weight, exercise and compression strategies, you will succeed, as have many tens of thousands worldwide. Be aware that with your history of longstanding venous and lymphatic edema, this regimen of self-care will most likely need to be continued for years. Best of luck and please contact the NLN for appropriate referrals.

Please address questions to: Editor c/o NLN, 116 New Montgomery Street, Suite 235, San Francisco, CA 94105 or e-mail: nln [at] ymphnet.org (nln@ymphnet.org). Deadlines for submissions (for the following issue) are: Feb 15, May 15, Aug 15, Nov 15.