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Team Approach for MALS - Establish a CARE TEAM

MALS is an isolating medical condition because it can be challenging to diagnose, and because its rarity means that very few clinicians have first-hand knowledge or are up to date on the latest research. The team approach is the best approach to managing MALS symptoms, securing a MALS diagnosis, finding the right surgeon, and having strong follow-up care post-surgery.

What kind of team should you create around you or your loved one? A team that is willing to learn, ready to listen to the patient, and willing to talk with each other. Sometimes, it is helpful to work within a network of people that ideally already have communication established with each other as they practice within the same provider network. However, it is most important to secure a team of doctors that are knowledgeable, willing to stick with you and work with your other specialists to provide the highest level of communication and quality of care.

Here are the important partners you may need on your care team, ideally all of which can be initiated and managed by your primary care physician. We have tried to provide direct perspective from a real-life example of each of these clinical partners. 

Over time we will provide direct perspective/stories on how these clinical partners have seen their role with their MALS patients. Click on the hyperlink to see stories of how these clinical partners have seen their role with their MALS patients.

  • What is Median Arcuate Ligament Syndrome (MALS)?
    MALS is a condition that happens when the Median Arcuate Ligament pushes down on the celiac artery and sometimes the nerves around the artery. This makes it hard for blood to flow normally. This ligament attaches to your diaphragm which is a muscular structure in your upper belly that moves up and down when you breathe. MALS can lead to awful GI symptoms, nausea, and pain. Most patients have their symptoms increase after eating, drinking, and/or exercise. It’s not a simple tummy ache.
  • What is the Celiac Artery and what does it do?
    The celiac artery is part of your vascular system which helps spread blood and oxygen throughout the body. The celiac artery is the first (1) of the three (3) abdominal mesenteric arteries and focuses on a specific section of your digestive system. The parts that it feeds are the stomach, pancreas, liver, spleen and upper part of the duodenum. When blood isn’t flowing properly it can prevent an organ/s from functioning as they should which is why when the artery is compressed it can cause so many uncomfortable symptoms.
  • How do I receive a MALS diagnosis?
    MALS is usually a diagnosis of exclusion. That means it is important to rule out other, more likely causes. Most patients will need to go through a full set of gastrointestinal (GI) tests just to make sure your symptoms aren’t from another illness. These tests look at how your esophagus, stomach, gallbladder, pancreas, liver and intestines are functioning. Very rarely will MALS show up on GI testing, so don’t get discouraged if the tests all come back as “normal”. At this point, you should be sent for further testing to look for MALS. These MALS-specific tests may include a wand (Mesenteric duplex ultrasound) that is rolled around on your belly to see how fast the blood flows through the arteries or a special x-ray machine (CTA) with or without a dye that takes pictures to see if any arteries are squished, a special magnetic machine (MRA) can do this too. Sometimes, you may need to have a special test that numbs the celiac nerves around the artery. This is called a celiac plexus block and it is sometimes used as part of the diagnosis process and sometimes part of the pain management treatment, but not always. The doctors will look at all your test results to see if you have MALS. It's important that the tests are done using the correct protocols necessary and should be done by someone experienced in looking for MALS. It's also important that all tests are read or interpreted by someone who understands the complexity of MALS and who knows exactly what to look for in the results. If not, you may be told you do not have MALS, when in fact you might.
  • Can you have a GI illness and still have MALS?
    It’s not that uncommon for a MALS patient to have more than just MALS, some people have another GI illness too. But there are also times when MALS patients get misdiagnosed with other illnesses because of their MALS symptoms. Gastroparesis (GP) is not that uncommon for MALS patients to have. Some doctors will diagnose MALS patients with Irritable Bowel Syndrome (IBS), Acid Reflux, Chronic Vomiting Syndrome (CVS) and Dumping Syndrome. These are all syndromes that are a diagnosis made by exclusion which is similar to how you get a MALS diagnosis. It’s important that you know that the symptoms you have that result in a GI diagnosis may or may not be directly related to MALS. We see both. Some patients have a (GI) diagnosis, but the symptoms are actually caused by MALS. In other cases, there is an independent (GI) condition not related to MALS. This is why it’s so important to have various GI testing prior to surgery including being tested for Small Intestinal Bacterial Overgrowth (SIBO), Cdiff (diarrhea due a bacteria and inflammation), celiac disease, fecal elastase stool and follow-up with your Gastroenterologist after surgery if you continue to have digestive issues.
Care Team
Transition of Care

Such interventions after surgery might include:

  • Angioplasty: placing stents in the artery to keep it open.

  • Celiac Plexus Block: For short-term pain relief.

  • Bypass: Surgically bypassing the celiac artery

It is critical to select a surgeon who will follow you over the long term. Repeat ultrasounds over a year or two can monitor the velocities of the artery. Recompression of the artery can happen months or years after “successful” surgery.

 

At the same time, however, the healing process is long. Many physical sensations during healing can mimic MALS symptoms, as can many of the issues listed above. It is important to give time for the full healing process before jumping to the conclusion that surgery didn’t work. And it is important to have a team of doctors who can investigate the ancillary issues that can be triggered by surgery before jumping to the conclusion that surgery didn’t work. If your Primary Care Provider and GI specialist have investigated all of your follow-on symptoms after surgery, and you have found no other cause, then it could be time to consult your surgeon again to explore if recompression has occurred.

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Transition of care after surgery is important to consider. You want to have specialists near your home whom you can see as your healing progresses, and particularly if your healing doesn’t seem to progress.

Many surgical patients develop issues after surgery that need attention from a PCP, pediatrician, or GI specialist. These can include issues such as:

  • Small Intestine Bacterial Overgrowth (SIBO) which can be remedied by diet and antibiotics

  • Costochondritis or Tietze Syndrome which can cause pain the thoracic area and can be remedied by antibiotics and physical therapy

  • Gastroparesis which needs special dietary attention

  • Muscle atrophy which needs consistent physical therapy

  • Hernias at surgical site

  • Pancreatic Issues which may require digestive enzyme therapy

  • Additional conditions not listed here

When Should You Follow Up With Your Surgeon

Follow Up

Transition of Care

MALS symptoms and surgery are complicated. The celiac artery can recompress after release of the median arcuate ligament causing renewed symptoms. This recurrence of symptoms is not necessarily a reflection on the skill of your original surgeon. The best surgeons acknowledge that MALS surgery might not resolve symptoms and that further interventions might be necessary.

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