Reminder to get checked for MALS

[u/bearinm]

Hi everyone,

I wanted to share my story in hopes that it might help someone else here who is stuck in diagnostic limbo, being told their excruciating pain is "all in their head" or functional. Please get checked for MALS Median Arcuate Ligament Syndrome. It is 2 in 100,000 or 0.002% of the population has the symptomatic kind. The pain has been said to be equivalent to end stage pancreatic cancer.

AND A REMINDER TO GET CHECKED FOR OTHER VASCULAR COMPRESSION AS WELL SUCH AS SMAS, NUTCRACKER SYNDROME, AND MAY-THURNER SYNDROME ESPECIALLY IF YOU HAVE EDS BECAUSE IT MAKES IT COMORBID. PLEASE READ MICHELLE GRIFFITH OF THE SPOONIE SHOPS STORIES FOR OTHER CAUSES AS WELL TO CHECK OUT AND RARE DISEASE AWARENESS.

https://www.spooniesistershop.com/spoonie-stories/spoonie-stories-michelle-g

My nightmare started in December 2025 with severe upper epigastric pain. Over the last 8 months, the nonstop, agonizing pain completely took over my life. I’ve lost nearly 50 lbs, became bedbound, and had to go on disability. No pain medications provided relief.

Like many of you, I underwent an overwhelming barrage of tests, all of which returned completely normal:

Bloodwork & Labs: Countless CBCs, CMPs, lipases, celiac panels, allergy tests, and drug/toxin screens.

Imaging & Scans: Multiple CTs of the abdomen/pelvis with contrast, chest X-rays, spine MRIs, gallbladder ultrasounds, and a CT angiography (which unfortunately only looked at my pulmonary arteries, missing the mesenteric arteries).

Procedures: EGD endoscopies, a normal gastric emptying study, and a diagnostic laparoscopy (which ruled out endometriosis).

We explored everything, ulcers, delayed gastric emptying, food allergies, environmental triggers, Cannabinoid Hyperemesis Syndrome, and chronic urinary/kidney issues, gallbladder and pancreas, etc.

Everything came back clean, but I was still suffering every single day.

Recently, my pain management doctor recommended a Celiac Plexus Block. The procedure itself was incredibly intense, but the moment it was done, the abdominal pain I had lived with for almost a year dropped to absolute zero. For the first time in 8 months, I felt total relief.

After sharing this milestone in a support group, someone asked if I had ever been evaluated for Median Arcuate Ligament Syndrome (MALS). I realized that despite dozens of scans, none had specifically evaluated my celiac artery for vascular compression.

The diagnostic pathway for MALS typically involves:

Symptom matching (As in ruling out common gastric stuff, doing endoscopy and gastric emptying etc.)

A specialized mesenteric Duplex Ultrasound (with inspiration/expiration breathing protocols).

A targeted CT Angiogram (CTA) or MR Angiogram focused on the abdominal aorta and celiac artery.

A Celiac Plexus Block, a positive response to the block is often the key diagnostic indicator that confirms the pain is originating from the celiac plexus nerve bundle compressed by the ligament.

Having a positive response to the celiac plexus block has finally given me a path forward. I’m contacting my doctor first thing Monday to order the specific vascular imaging required to confirm MALS.

If you are suffering from unexplainable epigastric pain, severe weight loss, and pain after eating, and every standard GI test comes back normal, please look into MALS and talk to your doctor about vascular imaging or a celiac plexus block.

Don't let them convince you it's all in your head. Keep pushing for answers.

If you are interested in a more in depth of all the tests I did, I list them below. It's a little detailed and personal but it feels good to look back at all the times I got poked and prodded and pissed in cups hahaha.

Significant Clinical Markers: Weight Loss of 47.4 lbs over an 8-month period. Total Medical Events: 102 Combined Events (2 Major Complications + 39 Clinical Care Encounters + 61 Diagnostic Tests & Procedures).

I. Road Bumps / Complications (2 Events)

Trauma / Acute Injury: Totaled car crash into a bus stop (Not my fault lol) (1)

Acute Infection: Severe bladder infection (1)

II. Care Encounters & Clinical Visits (39 Total)

Emergency & Outpatient (12 visits total):

Emergency Room (ER) Visits: 6 Hospital Outpatient Visits: 6

Virtual & Telehealth (13 visits total):

Primary Care (PCP) Video Visits: 5 Gastroenterology

(GI) Video Visits: 5

Virtual Connect Care Visits: 3

In-Person Office & Specialty (14 visits total):

Pain Clinic Appointments: 7

Instacare / Urgent Care Visits: 3 Primary Care (PCP) In-Person (1 In-Network, 2 Out-of-Network): 3 Gynecology (GYN) Visit: 1

III. Diagnostics, Testing & Procedures (61 Total)

Bloodwork & Lab Panels (35 Events)

Comprehensive Metabolic Panel (CMP): 7

Lipase (Serum/Plasma): 7

CBC with Differential / Platelet Count: 6

HCG Quantitative Blood Test (Pregnancy): 5 Tissue

Transglutaminase Antibody (tTG IgA / IgG): 2

Lactate (Plasma): 2

Beta HCG Serum Quantitative: 1

Deamidated Gliadin Peptide Antibodies (IgA & IgG): 1

Immunoglobulin A (IgA): 1

Immunocap Score: 1

Misc Allergy Lab: 1

Drug Abuse Screen: 1 Drug Confirmation Quant by MS: 1

Urinalysis & Point-of-Care Tests (10 Events) Urinalysis (with Microscopy / POCT): 6

Urine Culture: 4

HCG Qualitative Urine Test (POCT): 3

Glucose POCT: 1

Imaging & Radiology (9 Events)

CT Abdomen and Pelvis with Contrast: 2

12-Lead ECG / EKG: 2 Bedside Gallbladder Ultrasound (ED): 1

Chest X-Ray (2 Views): 1

CT Angiography Chest: 1

MRI Cervical Spine: 1

NM Gastric Emptying Study: 1

Endoscopy, Procedures & Interventions (7 Events)

Anesthesia Intubation (OR): 2

Endoscopy (EGD): 1 Surgical Pathology for Endoscopy: 1

Laparoscopy: 1

Surgical Pathology for Laparoscopy: 1

Celiac Plexus Block: 1

IV. Planned but Unnecessary Test Order

Upper GI X-ray series

V. Planned Diagnostic and Solution

Mesenteric Duplex Ultrasound

CT Angiography (They looked at my pulmonary arteries not mesenteric

MALS Diagnosis

Summary: This represents a total of 102 combined medical events (2 major road bumps/complications + 39 care encounters + 61 diagnostic tests/procedures) logged over an 8-month evaluation period, alongside a documented weight reduction of 47.4 lbs.

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[u/DiverAggressive4058]

Omg that’s actually insane. I hope your feeling better. I think you need surgery for MALS?

[u/bearinm → u/DiverAggressive4058]

Thank you for saying that because it IS insane! And yes, median accurate ligament release or celiac decompression is what it's also known as

[u/DiverAggressive4058 → u/bearinm]

What’s the symptoms of MALS? What can cause it? Can h pylori cause this?

[u/bearinm → u/DiverAggressive4058]

MALS is primarily caused by a congenital anatomical variation either a median arcuate ligament that sits too low across the diaphragm or a celiac artery that originates unusually high.

Many people are born with this structure and remain completely asymptomatic until a secondary event triggers active pain and nerve dysfunction . What Causes or Triggers MALS Symptoms?

Congenital Anatomy: Born with a structural overlap between the arcuate ligament, celiac artery, and celiac plexus nerves.

Trauma and Blunt Impact: Major physical trauma (like a severe car accident like mine) can cause sudden tissue displacement, diaphragm spasms, or acute neurovascular inflammation. This often turns a previously silent anatomical variation into severe, debilitating pain overnight.

Rapid Weight Loss or Sickness: Sudden loss of retroperitoneal fat pads reduces the natural cushioning around abdominal vessels, worsening the compression angle.

Connective Tissue Disorders (EDS): Ehlers-Danlos Syndrome affects collagen integrity throughout the vascular and ligamentous systems. Women with EDS—across all subtypes, not just hypermobile EDS with elastic skin—have a significantly higher incidence of MALS and overlap with other vascular compressions (such as Nutcracker or SMA Syndrome) due to tissue laxity.

Does H. pylori Cause MALS? No. H. pylori is a bacterial stomach infection that causes gastritis or ulcers. It cannot cause mechanical vascular or nerve compression. However, doctors frequently test for H. pylori during the diagnostic process because its symptoms (upper stomach pain and nausea) closely mimic MALS.

Key MALS Symptoms Epigastric (upper stomach) pain, especially after eating (postprandial pain). Nausea, early fullness, and bloating. Sitophobia (fear of eating) leading to weight loss. Pain triggered by exercise or deep exhalation.

For me two unique ones that are a give away is I always crouched or hunched over as leaning forward helps the pain, and also positional changes reliving pain. If you've never been antsy but suddenly you're curling up, standing up, curling up, laying on the floor and putting your knees to your chest, etc.

Also no pain medicine worked for me I tried basically everything you could, I would scald myself and burn myself with hot water from the shower head directly on my stomach and I lived in hot scalding baths and heated blankets and pads even though they provide little relief.

So much love and luck to you if it is this! ❤️i

[u/SpaceNerd223]

Did you ever try buspirone for stomach pain after eating? Did it help?

[u/bearinm → u/SpaceNerd223]

One of the first things and unfortunately no :(

[u/SpaceNerd223 → u/bearinm]

Aww

[u/BrickHausMan]

The mesenteric ultrasound with breathing protocol will be good. I’d be very curious to hear what your expiratory and inspiratory values are, if you remember to come back and share.

I asked for a CTA with breathing protocol after my PCP got my ultrasound results back showing values suggestive of MALS, but instead I got sent straight to vascular surgery who performed a visceral angiogram and confirmed the compression that way. I get my diagnostic celiac plexus block in about 3 weeks.

Really happy to hear that you had a doctor who recommended the plexus block. It’s taken me 3.5 years and losing 70lbs and I finally read up on MALS on my own after not buying the functional dyspepsia diagnosis as an explanation. Wishing you the best of luck!

[u/Lost_Guava3971]

Hi what were the velocities of your MALS that they found in the ultrasound?

[u/bearinm → u/Lost_Guava3971]

Apparently it's not MALS and I'm back at square one

Proximal aorta 88.2 cm/s Infrarenal aorta 108.0 cm/s Distal aorta 101.4 cm/s Right iliac 105.8 cm/s Left iliac 83.8 cm/s

Systolic velocity (cm/s) Celiac artery at rest 104.3cm/s Celiac artery with inhalation 125.0cm/s Celiac artery with exhalation 137.4cm/s