There are many reasons for misdiagnosis and faulty identification of lymphedema. Chiefly responsible is the tendency for the vast majority of physicians to lack sufficient, sound education about lymphedema as a distinct pathology.
Until the early 2000s, little reference materials existed in English although large volumes had been generated in German, French, and Italian. As such, it wasn’t until American research-minded rehabilitation specialists operating at well-regarded hospitals and universities and trained in Complete Decongestive Therapy began to duplicate outcome and methodology studies, that reading materials became available to English-speaking physicians.
Still some 20 years later, limited lymphological science enters the standard educational curricula for physicians. Even so, this science is centered more on immunology rather than anatomical and physiological insufficiencies of the lymphatic system.
With the advent of the Internet, vast quantities of information related to lymphedema and other lymphatic diseases have become instantly accessible to anyone wishing to know more. A large and vocal segment of patients (cancer-related) clearly identify lymphedema as being caused by gold standard cancer therapies. Coupled with increased survivorship and therefore higher incidence, lymphedema is demanding more attention at all levels.
Still, unless a physician specializes in oncology, vascular medicine, or rehab medicine, he/she may see lymphedema so infrequently that misidentification or faulty diagnosis will persist.
It should be mentioned that lymphedema arises from primary or secondary causes and as such complicates the clinical impression. A medical history that seems to indicate “no significant trauma” causing clinically apparent chronic limb-swelling can easily be dismissed as something other than lymphedema.
Perhaps watching/waiting, elevation, diuretics, vein striping/ablation, or light compression stockings will suffice as appropriate interventions? When little else is known about gold standard therapy or specialist clinicians, such as Certified Lymphedema Therapists, this is often the outcome. The problem with all of these interventions is two-fold: they have a benign, or worse yet, exacerbating effect AND delay appropriate intervention, allowing lymphedema to progress to a more chronic form.
Lymphedema arising from an insignificant trauma (triggering event) is called primary lymphedema. In such cases, an accurate diagnosis is typically rendered by excluding everything IT IS NOT (a diagnosis of exclusion). Furthermore, the physical characteristics of the condition will follow universal traits that to a trained professional render an accurate diagnosis without extensive and expensive testing.
Lymphedema can occur immediately or 25 years later
Additional reasons for misdiagnosis include the tendency for lymphedema to occur at highly varied time intervals. Some patients present symptoms immediately after a significant surgical or radiotherapy intervention, while others wait 25 years or more to develop findings. In such cases, lymphedema is dismissed as something that “would have occurred far earlier in the timeline” which then leads to unnecessary testing, misdirected treatment, and delays from intervention with gold standard care.
Lymphedema can affect only a small area
Further, sometimes it progresses very slowly, avoiding notice or alarm, or it impacts only a small area – such as one finger or the dorsum of the foot – causing the clinician to again question the diagnosis. “Shouldn’t it involve the whole limb? Is this really lymphedema?”
Early stage lymphedema is hard to diagnose
Until 2010, little was written about preclinical lymphedema, otherwise called Stage 0 or Latency Stage lymphedema. In this very early stage, lymphedema can only be measured with sensitive instruments like Bioimpedance Spectroscopes or Optoelectric Volumeters. However, when those at risk are interviewed, highly similar subjective complaints indicate with great accuracy a correlation with eventual, clinically evident lymphedema in the coming weeks or months. Until recently, the condition could not be diagnosed without overt clinical findings, so these patients were dismissed or otherwise misdirected away from appropriate intervention.
Lymphedema can occur in complex combinations
Lastly, lymphedema may occur less obviously than that which arises from known lymphatic traumas such a node dissection or radiation. Examples include:
- Orthopedic trauma
- Untreated venous disease where lymphatic health is slowly eroded by the strain of increased fluid burden shunted towards it by damaged venous valves or limited calf muscle activity
- Obstruction caused by excessive adipose congestion or local inflammation from recurring phlebitis that initiates direct mechanical damage to regional lymph vessels
- Limb position, inactivity, or prolonged ill-fitting clothing at the limb root that slowly degrades lymph drainage capacity
In such cases, the diagnostician may be unaware of the secondary lymphatic failure that will accompany what originated as a simple, clear-cut venous edema. Clinical lymphatic cues will combine with the former, more simplified venous characteristics to complicate the diagnosis and clinical pathway.