my struggles with lymphedema [info.]

Hello Everyone,

today I thought I might tell you all the story of how I came to live with Lymphedema. But first I thought I should explain what Lymphedema actually is:

Lymphedema is a condition of localized fluid retention and tissue swelling caused by a compromised lymphatic system. Some of that tissue can turn "nasty" and become infected. Lymphedema affects around 140 MILLION people worldwide.

There are quite a few "stages/grades" which I will talk. Lymphedema can be inherited (know as primary) lymphedema OR like myself it can be caused by an accident or injury to the vessels (known as secondary). It happens when lymph nodes are dissected via surgery or something like radiation therapy.

In my case I think (yes still not 100% sure) that after I had major surgery on my spine, to place a rod and screws onto my spine to correct the scoliosis. The doctors actually took out or "snipped" one(1) or more of my lymph nodes. Which in turn caused as you read before damaged to them and I now have to live with lymphedema.

To diagnose or to detect lymphedema early is difficult. The first signs may be subjective observations such as "my arm feels heavy" or "I have difficulty these days getting rings on and off my fingers". But unfortunately I was unable to tell as my legs are effected and the worst one being my left leg I have no feeling in at all.

Stages

Stage 0 (latent): The lymphatic vessels have sustained some damage which is not yet apparent. Transport capacity is still sufficient for the amount of lymph being removed. Lymphedema is not present.
Stage 1 (spontaneously reversible): Tissue is still at the "non- pitting" stage: when pressed by the fingertips, the tissue bounces back without any indentation. Usually upon waking in the morning, the limb or affected area is normal or almost normal in size.
Stage 2 (spontaneously irreversible): The tissue now has a spongy consistency and is considered "pitting": when pressed by the fingertips, the affected area indents and holds the indentation. Fibrosis found in Stage 2 lymphedema marks the beginning of the hardening of the limbs and increasing size.
Stage 3 (lymphostatic elephantiasis): At this stage, the swelling is irreversible and usually the limb(s) or affected area is very large. The tissue is hard (fibrotic) and unresponsive; some patients consider undergoing reconstructive surgery, called "debulking". This remains controversial, however, since the risks may outweigh the benefits, and the further damage done to the lymphatic system may in fact make the lymphedema worse.

Grades

Lymphedema can also be categorized by its severity (usually referenced to a healthy extremity):[citation needed]
Grade 1 (mild edema): Lymphedema involves the distal parts such as a forearm and hand or a lower leg and foot. The difference in circumference is less than 4 centimeters, and other tissue changes are not yet present.
Grade 2 (moderate edema): Lymphedema involves an entire limb or corresponding quadrant of the trunk. Difference in circumference is more than 4 but less than 6 centimeters. Tissue changes, such as pitting, are apparent. The patient may experience erysipelas.
Grade 3a (severe edema): Lymphedema is present in one limb and its associated trunk quadrant. The difference in circumference is greater than 6 centimeters. Significant skin alterations, such as cornification or keratosis, cysts and/or fistulae, are present. Additionally, the patient may experience repeated attacks of erysipelas.
Grade 3b (massive edema): The same symptoms as grade 3a, except two or more extremities are affected.
Grade 4 (gigantic edema): Also known as elephantiasis, in this stage of lymphedema, the affected extremities are huge due to almost complete blockage of the lymph channels. Elephantiasis may also affect the head and face.

Treatment available

Treatment for lymphedema varies depending on the severity of the edema in the effected limb. Most people with lymphedema follow a daily routine of treatment as suggested by their physician or certified lymphedema therapist. The most common treatments for lymphedema are a combination of lymphatic massage, compression/bandaging. Complex decongestive physiotherapy is system realistic of lymphatic massage, skin care, and compressive garments. Although a combination treatment program may be ideal, any of the treatments can be done individually.

Surgical treatments for lymphedema.

Lymphatic vessel grafting. With the possibilities of advanced microsurgical techniques lymph vessels can be sutured and used as grafts, a technique which is well known in vascular surgery. Locally interrupted or obstructed lymphatic pathway, mostly after resection of lymph nodes, can be reconstructed by a bypass using lymphatic vessels. These vessels are specialized to drain lymph by active pumping forces. These grafts are connected with main lymphatic collectors in front and behind the obstruction. The method is proved to be effective. Follow up studies showed significant reduction of volume of the extremities even 10 years after.

Next time I post (which I am hoping with be Friday) I will be talking about my own experience with Lymphedema. Hope you all enjoy the rest of your week!!

Amanda <3.