10 Years To Write This
It’s taken me 10 years to be able to write this.
After a decade of suffering a long list of symptoms like fatigue, pain, fibromyalgia, digestive issues, food intolerance, weight loss, and more…
After spending hours in bed almost every day as I miss out on work and being present with my family and friends…
After losing the ability to eat my favorite foods — and then slowly losing the ability to tolerate any solid food at all…
After sitting back and trying to not make it awkward while everyone else enjoys food-centric celebrations like parties, birthdays, Easter, Thanksgiving and Christmas…
After dropping 35 pounds to the point where I looked skeletal…
After seeing well over 20 different doctors covering primary care, gastroenterology, nephrology, hepatology, immunology, genetics, acupuncture, naturopathy and more…
After traveling all the way from Oregon to Arizona to spend 3 weeks with doctors the Mayo Clinic, and coming back with nothing to show for it…
After every test imaginable that fills more than 250 pages in my medical binder…
After multiple ultrasounds, x-rays, MRIs, CT scans, HIDA scan, endoscopy, colonoscopy, fluoroscopy, gastric follow through, liver biopsy and more…
After clinging to hope with many, many possible diagnoses and coming up empty time after time…
After being told by doctors (who can see my abnormal test results and should know better!) that the pain is all in my head and I should just take an antidepressant…
After thousands of dollars on medications and supplements that only made me feel worse…
After being told by well-meaning people that I’m probably just too stressed and need to relax and meditate more…
After frightening episodes of panic attacks, anxiety, severe depression and suicidal thoughts from not being able to take the suffering any more…
After 10 long years, I finally have a diagnosis that makes sense!
I have MALS, an acronym for Median Arcuate Ligament Syndrome, also known as Celiac Artery Compression Syndrome (CACS), Dunbar Syndrome, and Harjola-Marable Syndrome.
Two weeks ago I had a CT scan that shows the below image that led to my MALS diagnosis.
Isn’t if fun to see my guts and bones?!
Basically, there’s a ligament that’s pressing on the main artery that feeds blood to my intestines, liver, kidneys and other organs.
For most people, this doesn’t cause a problem at first. But blood flow decreases even more over time, causing a host of issues that pop up all over the body, making MALS hard to diagnose.
Eventually, gut pain increases along with debilitating fatigue and nausea. Most patients become unable to tolerate solid food. Sometimes they can’t even hold down water. Left untreated, patients typically lose a ton of weight. If blood flow is severely decreased, some internal organs become damaged permanently.
I am thankful, though.
Compared to other patients, I’m in a much better stage. I’ve been spared the endless trips to the Emergency Room that others go through because of excruciating pain. Yes, I’ve gotten so bad that I thought I’d have to close down my self-employment business, putting my family in a scary financial situation. But somehow, through grit and grind, I’ve been able to keep working.
And I’m very thankful that MALS is 100% treatable through surgery to snip the compressing ligament and remove damaged nerves.
I’ve started a very challenging process of finding a vascular surgeon, but more on that later.