Do you have POTS and undiagnosed abdominal pain?

[Zebra]

Hi, PheonixRisers,

Due to a rapid decline in physical health, I find myself spending far too much time researching and reading about medical conditions these days.

Somehow I chanced upon the following video from Dysautonomia International.

It's relatively short, maybe 10 minutes.

If I recall correctly, the doctor speaking is a pediatric cardiologist, who stumbled upon a structural condition that was causing his POTS patient's severe abdominal pain. It's called Median Arcute Ligament Syndrome.

Forgive me if this has already been discussed elsewhere in this forum. I just thought this was worth sharing, as there are a HUGE number of folks on this forum with significant abdominal pain, but no definitive diagnosis for the cause of that pain.

I will let the video do the rest of the explaining, but I will say that a laprascopic surgery not only releived the patient's abdominal pain, but also *cured* her POTS!

Might be worth watching the video if you have these two conditions, which, unfortunately, are most often treated by two different specialists who have no idea that both problems could be coming from the same source.

BTW: Use the link below to click thru to Vimeo. I've tested it. It works.

My best to all!
Z

 

[Wolfcub]

That's interesting @Zebra The right thing in the wrong place...or rather slipping down a bit lower than it should and "hugging" the celiac artery.
And causing two really debilitating conditions. It looks fairly easy to fix, if the patient can get on well with anaesthetic and surgery

 

[Zebra]

Hi, @Wolfcub!

While watching this video, I wondered if either an inherited or acquired connective tissue disorder might be associated with this condition. So now I have that on my endless list of things to research!

 

[kangaSue]

MALS can be a bit of a tricky condition to negotiate. Easily diagnosed by a mesenteric duplex doppler ultrasound, but only as long as the sonographer knows to check celiac artery velocities during both inhalation and exhalation. A supine mesenteric CTA will usually confirm the celiac trunk stenosis, but not always.

Scepticism of the condition by many doctors can be a problem. That's because only about 5% of people with celiac trunk stenosis get symptoms from it because collateral circulation from the superior mesentery artery usually makes up for the short fall in blood flow to the bowel from the stenosed celiac artery. Having too little or too much collateral formation is said to be the predisposing factors for developing symptoms.

Statistics I've seen find that in symptomatic MALS patients, about 20% of them have POTS, and people with EDS (or just idiopathic joint hypermobility) account for about 20% of MALS cases too. Dr Hasan Abdallah's statistics says that 32% of POTS cases with persistent postprandial abdominal pain have MALS, and 32% of cases having both MALS plus POTS have EDS

Just releasing the median arcuate ligament doesn't always resolve either the GI symptoms, or the orthostatic intolerance symptoms, or both. Johns Hopkins University proposes that a celiac ganglion resection can also be required, and that an anaesthetic celiac plexus block can be diagnostic in determining the need to do so (i.e. POTS symptoms should improve during the block procedure), but that's also a test used to determine suitability of candidates for a MAL release procedure as well.
https://clinicaltrials.gov/ct2/show/record/NCT04121338

Some more interesting reading about POTS and GI symptoms:
https://www.autonomicneuroscience.com/article/S1566-0702(18)30052-3/pdf

 

[Zebra]

Hi, @kangaSue

Thank you for contributing to this thread. What an amazingly informative post!

I agree that approaching one's primary care physician, or even a trusted specialist, will likely be met with a great deal of skepticism, and prove to be a big hurdle for most patients.

I don't think that I have this particular condition, but if I wanted to pursue this avenue of investigation, I would do some digging and go straight to the foremost experts in MALS.

Thanks again for sharing all your knowledge and web links!

 

[kangaSue]

Thank you for contributing to this thread. What an amazingly informative post!

Consensus with most doctors is that abdominal pain occurs from MALS causing chronic mesenteric ischemia (CMI). I'm diagnosed with the CMI but without any sign of celiac or mesentery artery stenosis (so non-occlusive CMI for me) however MALS is one of the conditions I have delved deeply into to rule out because imaging doesn't always show up celiac trunk stenosis.

MALS and non-occlusive CMI can have the same symptoms set though and autonomic dysfunction can lead to causing non-occlusive CMI so it can be either one causing abdominal pain. I don't have POTS, just (idiopathic) autonomic neuropathy (and chronic idiopathic gastroparesis) and interestingly, a Tilt Table Test provoked my (epigastric) abdominal pain, in the same way that it does in those with POTS and abdominal pain.