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.
Transition of Care
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
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.
Such interventions after surgery might include:
Angioplasty or placing stents in the artery to keep it open
Performing a celiac plexus block to cut off nerve pain
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.