u/Competitive-Party377

Hi all. Would make this a poll but cannot for some reason (not allowed?).

I have had dysautonomia since I was a teenager, later developed autoimmune issues, first allergies, then CIU, then myasthenic stuff. I have an MCAS diagnosis, hEDS, POTS, the last of which got much worse about two years ago after covid.

I was stented for May-Thurner Syndrome last year, and the combination of being in recovery from surgery and my job getting eliminated while I was on medical leave threw me into the worst POTS-MCAS flare of my life. I'm still slowly climbing out of it. But there's a relatively recent study showing that 70% of the patients with POTS in the study (n=~200 some iirc) had significant improvement in their POTS. The ones who did not had another vascular compression.

There does not seem to be a lot of data on MALS release outcomes for EDS folk, so I wanted to ask here in case anyone has experience with it, specifically in how it long-term impacted your POTS if you have it. I have a lot of MALS symptoms, have for some time -- dietary sensitivities because I get severe abdominal pain from inflammatory foods, have to eat small meals, postprandial tachycardia (which can turn into syncope if I stand up too fast after eating). But my main issue is the dysautonomia/POTS, and I'm also interested in the emerging theory that autoimmune issues can stem from chronic aggravation of the celiac nerve due to MALS. And I just got confirmation of high proximal SMA velocities and a narrowed CA, so I'm getting referred for a celiac plexus block to investigate whether MALS release and denervation would be a good idea.

So:
- if you have EDS and POTS and got a MALS release:
- did it improve your POTS and dysautonomia?
- or make them worse? permanently?
- did the surgery flare your MCAS? how controlled was it before surgery?

Thank you for any info!