Despite past attempts to google "unilateral edema," I only now have the name of a fairly rare syndrome that has been bothering me for a decade: May-Thurner Syndrome. This latest epiphany comes after paying a vascular specialist $35 to take a 2-second look at my leg and call up her colleague on her snazzy iPhone 4.
Now I have thought previously that I had the definitive answers and treatment would commence, but those were false idols, apparently. I guess the tendonosis (yes it's a word despite Google Chrome's protests), and lymphedema are only part of the story.
So to explain it briefly, my left iliac vein (vena cava...vein coming up from my left leg) has been compressed by my naughty little artery that passes over it and slightly to the left. The vein walls narrow, blood flows less freely and swelling ensues. There you have it.
Treatment is up for discussion, considering I have been told that I'm too young for the invasive stuff (with a hint of "with all the old people out there suffering from fatal conditions, why are you complaining?"), and I really don't know the full consequences just yet. What my reading thus far has taught me is that I am just the right age and gender to be afflicted with such a syndrome. It presents predominantly in women in their teens to twenties, and is possibly congenital. So take that, old people, you aren't the only ones with problems!
Now the next step is to decide how vocal I want to be about all this. Do I tell my whole family, considering the risk of clotting? Do I risk them not taking it seriously enough, or worse, freaking out like a bunch of Chicken Littles? Just when do I get to make my sister feel guilty for calling this actual affliction my "fat foot"?
I do feel mismanaged by all the doctors I've ever seen. Except Dr. Daou (so far...). I tried to express this to the specialist, and her response was, "Well, no one ever gave this diagnosis because they aren't specialists." That besides the point. What I want to know is why no doctor has ever sent me to her before. Ten years. Really?! Everything I'm reading now states that at the top of the differential for unilateral (one-sided) swelling is DVT, deep vein thrombosis (clots). And right below that...May-Thurner! So let's break it down: back when the swelling first presented, no one took me to the doctor. First betrayal of a child's trust in her grown-ups. Then when I take matters into my own hands, the doctor scans my ankle but does not check for clots. Not until 2010 is an ultrasound of both legs performed that rules out clotting. But no one took that next step. Blame it on a succession of substitute doctors (Daou was out of town) but either way...they are supposed to do their jobs. Now, finally, I have an actual diagnosis.
So, what's stopping me from believing that doctors don't bother reading new papers and journals to update their differentials and help the people who trust them? Seems to me healthcare "reform" could go a lot further.
But don't forget, no matter how young you are, be your own advocate! I had my parents and doctors etc. yelling and griping and throwing up their hands in frustration, but I've got my diagnosis now. Healthcare is for everyone, not just the older generations who for the most part have been irresponsible with their own bodies (Dad, for one, has never sought treatment for his tinnitus and continues to work with heavy machinery). No young girl should ever feel like I used to feel.
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