Understanding MALS: Why the Delay in Treatment and How to Cope

What is MALS?

Median arcuate ligament syndrome (MALS) is a rare condition that affects how blood flows to the stomach and intestines. Essentially, it occurs when the median arcuate ligament compresses the celiac artery, leading to a range of gastrointestinal symptoms. What can make this condition particularly frustrating is the often prolonged journey to diagnosis and effective treatment. Many patients report experiencing significant delays before they receive the help they need.

For more information visit the National MALS Foundation website

How Animals Can Help You Cope

Pets are known for their therapeutic benefits, especially during challenging times. Animals can bring immense comfort, reducing stress and anxiety levels. Interacting with pets can create a sense of joy and companionship that helps distract from pain, making the wait for diagnosis and treatment feel more bearable.

I adopted a new puppy to help me focus on something other than how I feel. Jill, pictured above, is a Jack Tzu (Jack Russell Terrier x Shih Tzu). She makes me laugh and gives me unconditional love. She is a "mini me" of my Goldendoodle, Sadie. They have bonded in one short week and become "sisters" in every sense of the word. My cat, Honey, gets along with Jill but is a little jealous of "lap time".

Consider spending time with a dog or cat, as the unconditional love they provide can significantly enhance your mood. Therapy animals can also be a wonderful option. Animals have this unique ability to sense their human's feelings, and they often react accordingly, which can be incredibly soothing during tough days.

While navigating the complexities of MALS may take time, don’t forget to lean on your loved ones – furry or otherwise – for support. Together, you can make this waiting phase more manageable.

Symptom Relief While You Wait

While you're in limbo waiting for treatment, there are several strategies you can explore to alleviate pain. Managing diet can play a crucial role; many patients find relief by avoiding high-fat meals and focusing on lighter foods that are easier to digest. Small meal portions can also minimize discomfort.

Incorporating gentle exercises, such as walking, yoga, or stretching, can help ease abdominal pain. Additionally, engaging in meditation and other relaxation techniques can assist in managing the emotional stress that comes with chronic issues like MALS.

I found relief with Epsom salt baths and an essential oil that relieves muscle aches. The warm water eased the spasms and the buoyancy defied the effects of gravity that exacerbated the pain when standing or sitting upright. Lying on my back with a heating pad usually broke the spasms when they hit me and helped tremendously.

But it’s not all about self-care. Reaching out to support groups can provide comfort and guidance. Many patients discover that sharing their experiences with others who are facing similar battles can lend emotional support, making the waiting game a little less lonely.

Why Does It Take So Long to Get Help?

The journey to a MALS diagnosis can be daunting. Patients often visit multiple healthcare providers before receiving the proper diagnosis. Symptoms such as abdominal pain, nausea, weight loss, and sometimes even emotional distress could easily be misinterpreted as common gastrointestinal issues. Unfortunately, since MALS is not widely understood, many doctors may not recognize the signs, leading to further delays.

On average, patients report waiting about two years or more to secure a definitive diagnosis. This delay can exacerbate symptoms and lead to secondary health complications. One reason for this is the need for specific imaging tests — like CT angiography or MRI — which are crucial for confirming the presence of the syndrome. Navigating the healthcare system can feel overwhelming, and answers are not always straightforward.

I ran across this video (see below) and found it very informative with the doctor's explanations and hearing the personal stories of two women who have experienced the effects of MALS on their daily life. One women (left) has had MALS surgery and shares her experiences with the other woman (on right) who has been diagnosed and is planning on having the MALS surgery soon.

Their testimonies of faith was just what I need to hear, to remind me who is ultimately the "Great Physician". Having faith provides the hope and the comfort when getting through the debilitating pain that hits the threshold of most human's limits.

Medical Disclaimer:

The information contained in this post is not intended to be construed as a diagnosis nor as medical advice. Please seek the help of your medical professional to diagnose and treat your particular condition.