there's a name for it

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.

last week or thereabouts

I’m sitting in my 90 year old grandmother’s living room tonight, watching and waiting for any sign she’s having trouble walking or otherwise getting around.  It’s not out of the ordinary for someone her age to be achy, or to require a walker, yet we’re all wondering what tomorrow’s tests and scans will reveal.  Her pain medication might make her more unsteady than usual; therefore I am having this impromptu sleepover.

Now the young and restless voice in my head is telling me I am too young for these worries and responsibilities, yet who else can do it?  In the other house there is a 6 month old, and Dad isn’t much of a nurse.  But still, here I am, highly educated and desperately wanting to see the world, and I’m stuck in a living room.  Naturally my thoughts drift to my mother, whose expertise would be most welcome in a time such as this.  It still grates on me that the loss of my mother requires further loss, in terms of sacrifice.  A heightened sense of responsibility toward my family, and thus the surrender (or just postponement, I hope) of global dreams.

The closest we have to a medical expert in the family now is a veterinarian…not that her presence isn’t of any comfort, but Mom’s quiet authority was quite a luxury, looking back on it.  Prescriptions and scans and exams were not so incoherent.  Prognosis was not so scary.  And with just a few words she could put to rest the inevitable negativity and fear that Dad has running through his head right now.  While my sister and I are thinking short term:  monitor Grandma’s reaction to the pain medication and get her ready for her CT in the morning; Dad is leaping ahead:  power of attorney and hospital stays and dampened spirits at the upcoming birthday celebration.

The quiet right now, punctuated by my grandmother’s big clock and the shuffling of pages of her book, is rather disquieting.  I’m not exactly sure how worried to be.  It’s been a while since I have been this close to the medical goings on of a family member.  With Mom, it was brutally sudden, and with Grandpa, it was quiet and expected.  Not since Grandma Elliott have I had to play prescription courier or anything like that.  That was seven years ago.

I was just thinking the other day, how it feels that I’ve accomplished so little in this decade.  With only a few months remaining…will I make up for it?

taking on water

So it's about time I write about something that has been on my mind for the past decade.  My unilateral edema.  There's some medical mumbo-jumbo for you!  Or as my sister so lovingly called it, my "fat foot."

This one time, at Band Camp...I noticed my left ankle was swollen.  I thought to myself:  did I turn my ankle on the field?  No.  I would have felt that.  I didn't fall on the stairs.  Wrench it while climbing into my bunk.  None of the usual explanations.  I do what any 17 year old would do...I notify the nearest adult who is supposed to take care of us young folk.  All they could do was shrug, and suggest I had been stung by something.  Well, I got stung by a bee on my toe once, and yeah, I would have remembered being stung on my ankle.

All through football season, I wrapped the ankle, limped, elevated it when possible, and asked occasionally if I could get some medical attention.  Never happened.  It was just something I would have to live with.

On a side note...no teenager should be told that.  Yes, they should learn that life can be unfair, but to give up?  To stop looking for a solution?  Never.

The wrapping and poor marching continued into college.  Despite being on my parents' health insurance, I decided to take matters into my own hands and show my now swollen ankle, foot AND calf to a university doctor.  "Wow, that's weird," he said.  I got an MRI that gave me the diagnosis: posterior tibiofibular tendonosis.  Not tendonitis.  The tendon that runs down the back of my calf and into the arch of my foot had been overstretched like an old rubber band.  This could cause swelling.  Eureka!

Phase one of physical therapy.  Exercises are always good.  I think my feet got stronger.  But the swelling continued.  And I paid a lot of money.  And wore stockings that only grandparents should wear.

Next, unfortunate attention paid to my medical mystery while in Canada.  I just didn't want to be noticed...not for that.  I got sick of explaining it en francais.

Fast forward to modern times.  Back to the family doctor, who suggests swimming, a good no-impact workout.  Ok.  A few more years, and grandma thinks there's something wrong with me.  Duh?  New doctor.  New guess.  Ultrasound.  No clot.  New doctor.  New guess.  MRI?  Nope.  Insurance doesn't like that idea.  I haven't been prescribed enough medication.  Though I am wondering if an anti-inflammatory would help...

The MRI would look at my lumbar spine and pelvis, searching for blockage of lymph vessels, veins, what-have-you.  Not tendonosis.  Methinks that the tendon stretched after the initial swelling limited my range of motion and altered my gait.  Doctor agrees.  But then what could it be?  All sorts of things, according to the internet, including a few auto-immune diseases that I would rather not have.  Cue House references?

My arch still hurts occasionally, and I get massage therapy and reflexology occasionally that seem to help in a miniscule way.  But shoes still fit differently, and I still get anxious when I wear skirts.  Which sucks because I love wearing skirts.