The Diagnosis

“Don’t you just hate it when you wake up in the morning with a swollen ankle!”

That one sentence, set into motion the three worst months of my life. I was 14 years old, an eighth grader, and for the past week, I had been waking up with an ankle that was more, and more swollen. As an active young lady who was constantly running about, riding bikes, figure roller skating, swimming, gymnastics etc. I assumed I had sprained my ankle, even though I didn’t have any pain, and it would go away. As I was getting ready for school I showed my older sister my left ankle and uttered, “Don’t you just hate it when you wake up in the morning with a swollen ankle!” queue eye roll and shrug as only an eighth-grade girl can do!

My sister’s response was that no, that isn’t normal and queue, “MOM! you need to come look at Brenda’s ankle!’

I won’t say I remember exactly what happened at this point, I am sure I saw my family doctor and he ordered a test when that test was negative he ordered another test and so on and so forth. I drank nasty concoctions and was scanned. I was given shots and scanned by a different machine. The test, that to this day 26 years later, still haunts me is the one where I lay on an x-ray table as the doctors tried to find a vein in the top of my swollen foot for over an hour and a half. They simply couldn’t find a vein with the lymphatic swelling that was present, not that they knew it was lymphatic swelling yet, this test was looking for leaky veins. Eventually, they found a vein, worked on injecting the dye they were going to watch with the x-ray and blew the vein in the foot and added a huge fluid lump to the top of my already swollen foot.

The results of this incredibly painful test, that there was nothing wrong with my vascular system. This, however, brought me to the attention of a vascular surgeon who had seen this before. Since we had ruled out cancers, and many other scary diseases, and vascular issues this had to be Lymphedema because everything else has been ruled out.

We met with the vascular surgeon who told me that Lymphedema would make my leg swell, was mainly a cosmetic issue, that I probably caused by something I had done, don’t run and don’t do any high impact exercises and here’s a script for a knee-high compression stocking see you next year.

With no understanding that I just received a diagnosis that would change my life forever, that there could be major complications (cellulitis), and many things to consider to manage my LE. I left not knowing that my condition was PRIMARY meaning there is a genetic component that caused lymphatic malformations in my leg, believing I had done something wrong to cause this, and that I could do more damage by continuing my active lifestyle.

This happened back in 1992, I don’t believe much was known about LE back then, the vascular surgeon (surely had seen LE he diagnosed me but looking back he obviously didn’t really know what it was or what else to do for me) did not put me in Complete Decongestive Therapy (CDT), or recommend Manual Lymphatic Drainage (MLD), a pneumatic pump was not suggested, basically here’s your diagnosis be happy it’s not cancer or something worse wear these ugly compression knee highs and you’ll be fine.

It would be sheer dumb luck, that I did the best things possible for my lymphedema in the next few months to reduce the swelling in my leg, wear my knee-high and seem to be only mildly inconvenienced for the next 18 months. I learned about the complications and ugly side of Lymphedema at 15.




Author: Life of an LE athlete

I have had Lymphedema in my left leg since 1992. Follow me through the ups and downs of living an active lifestyle that doesn't let my Lymphedema limit my life. I have learned to maintain an active lifestyle despite having Lymphedema.

2 thoughts on “The Diagnosis”

  1. I also have primary lymphedema that showed up after a minor injury when I was in my 30’s. The doctor I saw then ordered an x-ray. It came back negative. I was told I don’t have normal swelling. That was it. What a disservice! For the next 15-20 years, I searched medical books and the internet for a diagnosis. Now the swelling was in two feet and ankles. Sometimes the swelling went above my knee and hurt. That’s when I really started looking for treatment.


  2. I have secondary LE from cancer surgery and pelvic radiation. I have been fortunate to have an Oncologist who understands it and was sent to a PT specializing in it. My heart goes out to the many who struggle with insurance and lack of healthcare. I’m just beginning my journey with this.
    Your story is very engaging and I’m looking forward to more.


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