Time senstitive! Newbie, may have EDS, Dr. wants to schedule venogram with stent for pelvic congestion syndrome

[Paula B]

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.

Thanks!

[Dr. Diana]

Hi Paula, I’m sorry to hear that you are having to try to figure all of this out yourself! I think many of us fear Vascular EDS, but in reality, it is rare. Most people have a clue by their family history of vascular events, or they have a specific LOOK (or phenotype). They have sparse hair, thin lips, thin and pinched nose, and almost transparent skin — you can often see most every vessel through their skin. I don’t believe it is usually necessary to test for Vascular EDS without that “look” and with no family history, but if it needs to be checked, there is genetic testing for it! You can get a solid answer for that type of EDS. I hope all goes well for you! Gentle hugs, 🙂 Dr. D

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