Robin's Story
Hi. I’m Robin. I’m 44 and have been diagnosed with MALS (Median Arcuate Ligament Syndrome a.k.a. Celiac Artery Compression Syndrome, Dunbar Syndrome, etc.). From childhood, I always had difficulty eating, especially first thing in the morning. I was very active in sports including gymnastics, running, and biking. I always had weird pains during exercise, but I usually ignored them. As I aged, I began having more symptoms - my left eye would become red and painful, I had constant nausea, difficulty eating, pain with eating, itchy skin, weird sensations around my abdomen like someone was strangling me right below my breast line, etc. I went to countless doctors and all the testing was reported as normal. I felt crazy.
In 2002, after an increase in symptoms including the addition of severe fatigue that was debilitating, I also started having significant bladder issues (frequency, urgency, and an inability to empty my bladder). I was self-catheterizing 4 times per day to ensure my bladder was empty. I was diagnosed with a neurogenic bladder (showed as positive result on the urodynamic study completed). I was sent to a Neurologist and after many expensive brain scans and spinal scans, I was told I likely had Multiple Sclerosis. Thing is I do not (I know this now). I was treated and followed by the MS Clinic for years just waiting for lesions to show. They never did.
After a few more years (7 to be exact), I had additional symptoms turn up, blood pressure changes (would go high and drop low), I would pass out, exercise was extremely difficult due to the blood pressure issue and fatigue ( I pushed through anyway). Then, one day while at work. I passed out. My boss told me I had to go see a doctor and get cleared to return. I thought to myself. Sigh, another doctor. I went to a "walk-in" clinic - they would surely do a quick exam that would be normal and I could go back to work. After all, I was thin and "looked" healthy.
This doctor looked at me and said "this doesn't sound like MS". Yes, I know. lol. He then asked if anyone had ever looked the vascular system in my body and he ordered an MRA of my abdomen and pelvis. I was angry that I had to pay for yet another expensive test and it would be normal. I was wrong. The doctor called and told me to come into his office. I had MALS.
He referred me to a doctor who had significant experience in MALS treatment. I had every test known to man it seems between the referral and my appointment including a full GI work up - colonoscopy, endoscopy, pill cam, xrays, cardiac work-up, heart monitors, barium studies etc. Then when I got to the hospital more tests. He ordered a CTA and a Mesenteric Doppler Study. My doctor confirmed significant MALS. I was 99-100% compressed during exhalation and when lying down flat. My artery would collapse and lay flat on my aorta causing a back flow of blood toward my heart. I was scheduled for open surgery in October 2010. He trimmed/cut the ligament (freed it) and trimmed up all the tissues. I also earned my first large “zipper” scar. After recovery, I had compete resolution of every symptom...every single one. I returned to normal life eating, biking, and even ran my first 1/2 marathon. I felt amazing!!
About 3 years later, I started having symptoms creep back in debilitating nausea, blood pressure changes, severe constipation, pain, bowel issues etc. My "walk in" clinic doctor was now my primary care doctor! I shared with him the return of symptoms and he ordered another scan. The CTA showed MALS again. This time, I also had developed post stenotic dilation which is like an aneurysm-one in the celiac trunk and one in an artery coming off of the celiac.
My vascular surgeon wanted to try an arteriogram and possibly consider a stent to keep the artery open. Unfortunately, this didn’t work. After the procedure, I developed a blood clot in my abdomen and was hospitalized for 5 days as it was in line for my lungs. Then, after 6 months of treatment, I was scheduled for open surgery again. This time, my doctor planned to bypass/reconstruct the artery.
In April 2014, I had my second open MALS surgery. During surgery, the surgeon and his team felt they could not bypass my artery due to the significant amount of dense scar tissue that was everywhere. It was on my liver, spleen, pancreas, and all over the celiac artery trunk and caused an artery to wrap itself around my SMA. He cleaned up all the scar tissue including some additional nerve tissue. He then needed to figure out what to do for my celiac as it was floppy and unable to stay open and in the correct position. He also feared future scar tissue development. So, he and his team performed the world’s first ever omentum fat wrap around the celiac artery. He cut it and wrapped it completely around my celiac artery. This was to help protect the artery scar tissue as scar tissue doesn’t adhere to fat the same as other tissues. He stitched it into place and left multiple surgical clips for stability etc. After a long recovery and another long “zipper” scar, all of my symptoms resolved. I started mountain biking again, running, eating and just enjoying the life I had been given, again.
3 years past and once again I started having some symptoms. The pain, nausea, fatigue, blood pressure issues, and gastrointestinal symptoms returned. My scans show that my artery position looks great - the fat wrap was helping!! However, I had what appeared to be a small “dent” in the artery again, most likely due to more scar tissue. I saw my doctor and was scheduled to have a celiac plexus block to see if it relieves symptoms. I struggled to eat normally and relied on a primarily liquid diet, but even that was painful. In November of 2017, my doctors office referred me to an interventional radiologist at the same hospital. He felt a stent may help open my artery and prevent me having another surgery. While scared (due to the previous blood clot), I agreed and he was successful, providing another 6 months of full relief.
Symptoms returned again and I received by second stent (starting inside the first and extending to the splenic artery). So far so good! I’m working full time as Mental Health Coordinator for a school system and enjoy mountain biking, working out, traveling, eating and boating.
Regardless of our path, the length of the road, and the number of interventions I must have I don’t regret it one bit. Having complete resolution of symptoms for several years is an amazing feeling. I wish that for everyone and for myself as I continue this journey.
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To read more about Robin’s story, please click on the news story that was written about her journey.
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