National MALS Foundation Pediatric Portal
First things first, take a deep breath! When you find out you have MALS, people tend to go on a scavenger hunt for information which can be extremely overwhelming. It can also be frustrating since there isn’t a lot of accurate information on the internet. The purpose of this portal is to help make learning a little easier and for the information to be from evidence based research and testimonials. When it comes to testing for MALS, surgeries and developing coping skills for living with a serious medical illness, we want to be able to provide as much help as possible. We hope that these Q&As will be able to ease your mind about everything that comes with a MALS diagnosis. This part of the website is made specifically for pediatric patients and their parents. Many MALS patients are under 18, but there's not much information when it comes to how best to treat them. Research studies are mostly done with adults, making it hard to tell if those statistics even apply to someone under 18.
Even though age is in your favor when it comes to healing, it's also worth addressing the impact of the physical, social and emotional aspects of your MALS journey. It can be confusing, as well as, make you feel sad, lonely and even angry as you see your peers living symptom free lives. MALS not only involves physical things that happen with your body, but can also impact you socially and emotionally. This is completely normal and does not mean you have a mental health problem! MALS symptoms can be debilitating and trying to cope with all of that while trying to maintain a normal academic and social life can take a toll on you emotionally. It is definitely not easy living with MALS. It’s also not fair when you are not taken seriously by the doctors who are supposed to help you. You are not alone in this problem as this happens to adult MALS patients as well. We know that thinking about surgery as a young person and a parent can be overwhelming and we want to be able to make this process less stressful and less scary for both. We hope this information can provide peace of mind as well as filling in the gaps the doctors may have missed. Every MALS patient is unique as are their stories and we want to provide as much solace as we can as you navigate on your MALS journey.
Tests That are Used to Help Diagnose MALS
The most frequently used tests in getting a MALS diagnosis are the Mesenteric Duplex Ultrasound, a CTA or MRA and the Catheter Angiography through the groin or arm. Sometimes, doctors will also ask that you undergo a celiac plexus nerve block, if they think it will help. Just remember that a celiac plexus block is not exclusive to MALS. It is used to help with pain management in other conditions like pancreatitis and pancreatic cancer.
Mesenteric Duplex Ultrasound evaluates blood flow through the mesenteric arteries (celiac, superior and inferior) which supply blood to the digestive organs. Gas can make getting a good reading difficult because it blocks the blood flow image in the arteries. A gas relieving product may be recommended to take before the procedure. It is critical that this test be performed using inspiration and expiration to avoid false negatives.
CT angiography (CTA) scan is a special kind of CT x-ray exam that focuses on the blood vessels, using a contrast material to make them show up clearly in the images. CTA is used to examine blood vessels in areas including the abdomen. It is critical that this test be performed using inspiration and expiration to avoid false negatives.
Magnetic Resonance Angiography (MRA) or MRI scanner. Magnetic resonance imaging (MRI) is an advanced medical imaging technique that does not use x-ray or radiation. An MRA (a special type of MRI) is used to obtain detailed images of blood vessels and blood flow.
Catheter Abdominal Angiography with contrast dye. Angiography, angiogram, arteriogram are all terms used to identify a procedure that outlines blood vessels, usually arteries, in various areas in the body like the abdomen. A thin plastic tube, called a catheter is inserted into an artery through a small incision in the skin in the groin or arm. This tube is guided into the celiac artery. Contrast material is injected through the tube and images are captured. The doctor can also obtain pressure measurements which help determine how compressed or closed off the artery is and see how tortuous the blood flow is in that area compared to surrounding vessels. This test can determine if the artery is compressed and needs intervention.
Celiac Plexus Block can be used to assist with a MALS diagnosis and or for providing pain relief. The abdomen has many nerves that run through this area. There are also times when people have an unsuccessful block but still have success with surgery. This has recently been added to the MALS world and some doctors do not require or use it as a diagnostic test.
Are there illnesses that are common for MALS patients to have?
MALS patients are all so different when it comes to our specific MALS symptoms. Oddly enough there are a few other illnesses and even surgeries we seem to commonly share. Just because fellow patients happen to have these illnesses doesn’t mean that every MALS patient does. Some people may have MALS but are otherwise healthy.
Some of the conditions seen in some MALS patients are:
Postural Orthostatic Tachycardia Syndrome (POTS)
Ehlers Danlos Syndrome (EDS)
Mast Cell Activation Syndrome (MCAS)
It’s also common for MALS patients to have their gallbladder removed sometimes unnecessarily.
There are also a few that aren’t as common but also appear in our fellow MALS patients:
Superior Mesenteric Artery Syndrome (SMAS)
Nutcracker Syndrome (NCS)
Pelvic Congestion Syndrome (PCS)
May Thurner Syndrome (MTS)
How do I connect with fellow MALS patients and caregivers?
There are a few support groups for MALS patients specifically. They can mainly be found on Facebook MALSPals. There is also a MALS forum on Mayo Clinic Connect Our community is small but it is incredibly compassionate and caring. It can be an incredible experience to connect with people who are going through the same thing you are. Most support groups have both the MALS patients and their caregivers. So you can hear about the MALS experience from each side. These groups were created to help us find each other. They have also become a safe haven for us to share our journeys with each other. They aren’t always happy stories but it does help to be able to share and read about fellow experiences.