Frequently asked questions
PRIMARY CARE PROVIDER and PEDIATRICIAN
to initiate and manage the exploratory process and advocate for you as the patient in need. Primary Care Providers are generalists who look out for your overall health, and should work with you to find the right specialists you need. The right PCP or pediatrician will help you get to a diagnosis, help coordinate your care with your larger medical team, and then help guide you through post-surgical healing.
to run routine GI tests and explore other possible GI diagnoses. You will likely need to go through a full set of gastrointestinal (GI) tests that look at how your stomach, intestines, pancreas, gallbladder and other GI organs work. Very rarely will MALS show up on GI testing, so don’t get discouraged. MALS is a diagnosis of exclusion, so it is critical to have the full battery of tests to make sure you do not have another diagnoses that are causing your symptoms or are complicating them.
to rule out cardiac issues because some MALS symptoms manifest as chest pain/pressure and/or discomfort. In some people you can also get a fast or slow heartbeat and/or blood pressure issues.
PAIN MANAGEMENT SPECIALIST
to help manage the pain in a thoughtful way that minimizes the bias against drug-seeking patients.
to help create a diet that will maximize the nutrients your body needs while minimizing pain. Pain from MALS is caused in part when the digestive system calls for blood, which then rushes through the compressed celiac artery. Fatty foods take longer to digest, so when you eat fatty foods, your system calls for blood more frequently causing more pain. In addition, the celiac supplies blood to your pancreas which is responsible for producing enzymes which break down your food in order to be absorbed. In some people, the lack of blood flow has caused their bodies to stop or limit production of these enzymes. Dietitians will tell you that the key to maintaining muscle, organ health, and nutrients is to eat very small portions of 4-5 bites with enough protein to maintain your height and weight.
COGNITIVE BEHAVIORAL THERAPIST
to provide you with tools to manage the anxiety and pain involved in MALS. The mind body connection is powerful, and coping tools can help the MALS patients deal with chronic pain as well as the mental preparation needed for major surgery and post-surgical healing.
to help prior to surgery and post surgery to combat the pain of tightened chest muscles due to being curled up in pain; to reduce the painful effects of costochondritis or tietze syndrome after surgery; and to build up muscle functioning again after long months of atrophy and nutrient deprivation. Find an orthopedic physical therapist in your area if possible, who can evaluate you and give you tailored exercises to loosen up the cartilage and muscles between the ribs, to relax the abdominal muscles, and to build back up your core muscles. Physical manipulation after surgery can also help reduce the development of scar tissue and provide a better recovery.
to help treat various conditions by inserting very thin needles through a person's skin at specific points on the body, to various depths. Research suggests that it can help relieve pain and nausea. Also, used for a wide range of other complaints.
incorporates various clinical and relaxation soft tissue manipulation techniques to help reduce tension and pain from tightened neck, back, abdominal and thoracic fascia and muscles from the physical stress of living with a chronic pain condition and to help following surgery during the healing process.
There are numerous types of surgeons that treat MALS. This may be a Vascular Surgeon, General Surgeon, Bariatric Surgeon, Cardiothoracic surgeon, Gastrointestinal Surgeon, Oncology Surgeon, etc. (once MALS diagnosis confirmed)—to reconfirm the MALS diagnosis and create a surgical plan and post-surgical long-term monitoring.