Hi! I’m a newbie. Background: Age 55. I have hypermobile joints and my very experienced PT really thinks I have mild or “borderline” EDS. (Not formally diagnosed.) Was diagnosed with interstitial cystitis 20 years ago. 8 months ago an episode of bizarre foot/ankle swelling prompted visit to an interventional radiologist. About same time, I started having BAD pain in left leg and left hip/buttock that has really affected my life. CT scan showed “pelvic congestion syndrome”. That dr. wants to do an outpatient venogram and would possibly place coils in 2 veins and/or a stent in my iliac vein (possible May Thurner Syndrome).
BUT, my world just got rocked when I received email from my nephew’s wife, a former POTS patient of Dr. Driscoll’s, saying I should probably be tested for vascular type of EDS before agreeing to the venogram and stent/coils, as the procedure might be putting a bandaid on a problem and causing serious complications down the line. She mentioned a blood test to check for inflammation, as maybe that could be causing the abnormally big veins??? Can anyone speak to this? I don’t think I have POTS. (My 17-old-son may, as he’s passed out before.)
This is time sensitive, as insurance just approved the venogram and the hospital will be calling to schedule it. Should I put off this procedure? Should I get tested for EDS? If so, where? I live near Littleton, Colorado.