Lymph is Good
chronicles the journey of an active 30-something Dallas-ite trying to keep her head up while grappling with primary lymphedema.

The Lymphoscintigraphy

“I’m not going to be in tomorrow morning. I’m getting radioactive dye injected into my toes tomorrow morning…” You don’t get to say that line everyday…

I was preparing myself for the worst experience ever: the lymphoscintigraphy. I heard that the injections were terrible, that the pain lasted forever, and that patients typically came with support (their therapists). I was going alone and was bracing myself for rollercoaster-worthy screams. 

The most painful experience I’ve ever had in my entire medical life was when I had a compartment syndrome test done in my calves. This is when the doctor sticks needles through your muscles (vertically), asks you to do some sort of physical activity, only then to come back and stick more needles into you. That was the worst test I ever had done. 

The lymphoscintigraphy was nothing. And I even got to listen to my own entertainment while I lay there instead of the lame MRI headset music. 

While laying on the plank, I grilled the technologist for preliminary results… all I got was, “We’ll need you to come back. The dye hasn’t made it through your system yet.” In short, that wasn’t good news. He then said, “Don’t put your stocking back on and don’t walk around too much. But, be sure to walk somewhere.”

Wait… I couldn’t put my stocking back on. But I had to walk somewhere. Holy paranoia, Batman! This feels incredible!

For five minutes, I walked on air through the hospital corridors. I marveled at the way my pants felt on my skin. How unburdened I felt by my lack of stocking. And how “free” I felt of my condition… a tease.

During the next two hours I sat in the hospital cafeteria wondering why the dye hadn’t made it into my system… Where did it go if not into my system? Where did it stop? Why did it stop? 

Finally, back on the plank the technologist clued me into what he was looking at… “There’s not a lot of flow in your thigh. It appears to be ok from your right toes to your right calf but then it just kind of stops and doesn’t pick back up much until your groin… but there isn’t a whole lot there… so… I don’t know what Dr. Nguyen wants me to look at here…” (Comforting.)

Prognosis: I have moderate to sluggish lymphatic flow from my right toes to my right knee and sluggish to very sluggish flow from my right knee to the top of my right leg. My left leg, however, appears to be just fine. 

Well… that would explain why my knee hurt! (See, I told you there was an explanation for my knee pain! But, turns out, the swelling was causing the knee pain… not the other way around.)

Goldilocks Syndrome

A Thousand Words