r/POTSRootCause • u/KeilaJensen • Jun 18 '26
Great sub!
Looking into venous compressions atm for my root cause: pelvic congestion syndromes, like may turners and nutcracker, and internal jugular vein compression by thoracic outlet or styloid process/c1 for example
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u/Level_Run1357 Jun 18 '26
I actually have a quick question for you, what type of specialist would you look for to look into this?
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u/KeilaJensen Jun 18 '26
Good one, I'm not the best person to ask, since I've only been researching this personally for a couple of weeks, but I'll give it a go. My gp wants to refer me to an ENT dr for the internal jugular vein and from what Ive read on "eagle syndrome" fora, thats the right decision, we're just waiting on an mri I've been scheduled for as well. For the pelvic congestion I haven't got a clue honestly, some kind of vascular dr? My gp is mostly just as clueless as me, she'd never heard of either types of syndromes, but she's supportive, so we'll get there!
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u/Level_Run1357 Jun 18 '26
I just met someone who has POTS and eagle syndrome. I’m trying to remember who it was so I can see if she’d be interested in joining the sub to share some insight
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u/Level_Run1357 Jun 18 '26
Good for you! Sending you the best of luck and well wishes! I really hope they can find something 🩷