Patient Stories

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Four years ago, MALS came into my life and since then it has led me on a very powerful, fulfilling, and unexpected journey. 

Late 2014, I started noticing spurts of abdominal pain that would come out nowhere. At first, I just brushed it off as something I ate upsetting my stomach. Well, the pain progressively became worse and more constant. It reached the point to where I could no longer tolerate solid foods because the pain became unbearable. 

I consulted with multiple gastroenterologists, went through extensive testing, tried medications to no avail, and was told I was suffering from Irritable Bowel Syndrome.

I suffered with this unexplained abdominal pain for months before I finally had a diagnosis. The diagnosis was made from evidence of celiac artery compression on an MRA scan. I was relieved yet confused. I had never heard of Median Arcuate Ligament Syndrome and definitely did not know its rarity in the surgical world.  

I was referred to a local vascular surgeon who explained that the compression of the median arcuate ligament on the celiac artery was restricting blood supply to my stomach, causing significant pain with eating. He told me the treatment would be an open surgery but wanted to confirm the diagnosis with an angiogram first. He seemed knowledgeable and confident and I trusted him. 

I had open surgery in February of 2015. The Median Arcuate Ligament was released off of the celiac artery without any complications. The incisional pain was very, very difficult but once I got through it, I was back to living a normal life and working full time. MALS was gone, so I thought. 

Approximately six months post-op, the nightmare returned with a vengeance. The pain was back and it was even worse! Panic set in. I immediately notified my surgeon and  was unpleasantly surprised at his lack of concern. He treated me as if I was insulting his work, but finally agreed to another angiogram. I was convinced something went wrong with my artery again, yet the angiogram showed a perfectly open celiac artery. My surgeon told me he did his job and there was nothing else he could do for me.

I thought to myself, if my artery looks good, it has to be a gastrointestinal issue. I repeated every GI test that I did pre-diagnosis, including countless ER visits and visits with new gastroenterologists. Everything was perfect on paper, yet I felt like I was dying inside. 

I became so sick and tired of being disappointed by doctors, especially those who did not “believe” in MALS or who thought the best treatment for me would be to see a psychiatrist. I lost trust in every single doctor I had consulted with and decided to start researching MALS myself.

I joined a MALS support group online and started to read more and more posts about MALS pain coming from inflamed celiac plexus nerves rather than a lack of blood flow. The test to determine nerve involvement was referred to as a celiac plexus nerve block. I was fascinated yet terrified that this could be my problem. It was the only thing I had not tried thus far, and I was determined to do it. 

I consulted with a local pain management doctor who was willing to work with me. We went over my medical history and post-op testing. After he saw what I had been through and the agony I was still in, he agreed to do a celiac plexus block, posterior approach using x-ray guidance. He suggested a longer lasting block using alcohol, said to last 2-6 months. I was sold. 

The celiac plexus block did not give me any relief the day of the procedure. In fact, it caused more discomfort, if that was even possible. My pain management doctor said to give it two weeks to take effect, and he was right. At the exact two week mark, my pain faded. I felt normal and it was amazing! 

I had more answers now. However, the BIG question was, now what? The ablation lasted a great four months. I ended up repeating the injections eight times. It was the ONLY thing that touched my pain. I had to work, I had to eat, I had to function & I had to find a surgeon to fix me. It bought me time. 

I made good use out of my pain free months. I consulted with numerous vascular surgeons throughout Southern California and even one with MALS experience in Chicago. I was once again let down by each and every one of them. No one wanted to help me.

I kept active & very involved in my MALS support group in hopes of finding more answers. I had already come so far. It was just a matter of finding the right doctor to understand me.

In early 2017, I had come across the name of a surgeon located in Connecticut who believed and treated MALS as a nerve issue. I was intrigued. I called his office, explained my situation, mailed in all of my medical records and impatiently waited for a call back. 

I was shocked to receive a phone call from Dr. Hsu himself. He took the time to explain where my pain was coming from and why my first surgery had failed. He explained the risks of a revision surgery and everything that the surgery entailed. He was extremely intelligent, confident, humble, and compassionate. I knew in my heart, he was the surgeon for me. Surgery was scheduled for May 3, 2017.

My surgery was a success and Dr. Hsu confirmed that my celiac plexus nerves were indeed inflamed. Finally, confirmation of why my pain came back and was wreaking havoc in my body.

At the time of this writing, I am fifteen months post-op and I have had my fair share of ups and downs. This surgery is unlike any other, which makes the recovery very challenging. It takes time, patience, a positive mental attitude, and a strong support system to push through. 

From as early as I can remember, I have always dealt with belly pain. I remember lying in bed as an 8-year-old little girl, unable to sleep due to the gnawing pain in my abdomen. After discovering counter-pressure helped relieve some pain, I would be able to sleep. This continued most of my life. Until in my mid to late 30s, I never realized that for most people, a full belly did not mean a painful belly. After my 3rd pregnancy, at the age of 31, my GI issues began to drastically intensify. This time marked the beginning of the fight for my health, my developing self-advocacy skills, often in opposition to my doctors, and my pursuit of knowledge of anything and everything that might somehow prove helpful - a diagnosis, a treatment, and/or a healing. It has taken nearly a decade to get where I stand today, able to share my story to encourage others to keep fighting for answers and to hold on to hope!

After a diagnosis of celiac disease, I cut all gluten out of my diet, which gave me some improvement with my GI issues, but not complete resolution. Within six months, I began having a host of other issues along with my chronic constipation – fatigue, depression, anxiety, slow, foggy thinking, menstrual irregularities, and low heart rate. I set out to figure out what was wrong with me, frantically searched Google, and landed upon hypothyroidism. I made an appointment with my PCP at the time and asked for testing. Considering I was 5‘4” and 112 pounds at the time, the doctor stated rather condescendingly that people with hypothyroidism “don’t look like you”, that all my depression and anxiety symptoms were due to having a young child, and that I needed to “learn to relax”. She recommended St. John’s Wort for my moods. I said “Ok, but will you PLEASE just give me the blood test.” She said, “I will, but I know it won’t show hypothyroidism.” Defeated I went home and started the St. John’s Wort. However, three days later I got a call from her nurse saying to stop taking the supplement and go to the pharmacy to pick up my thyroid hormone replacement medication because my blood work showed low levels of t4 and a high TSH. In August 2011, I was given the diagnosis of hypothyroidism and I promptly fired that doctor.

The next few years were spent dealing with lingering symptoms of chronic disease, going through every diet recommendation for healing autoimmune disease, taking a cocktail of nutritional supplements daily, radically eliminating all environmental “toxic” exposures, and trying to carry-on being a supportive wife, raising 3 children, being an active volunteer at our church, and exercising (though at this point my qualifying-for-Boston-Marathon-running-days were over). I knew my (quality of) life was not where I wanted it to be, but I couldn’t do much more than pray and do the recommended health and nutrition routines that I continued to discover on Google (who cared if they were truly scientific and effective, I tried anything and everything!). It was during this time that I discovered I was pregnant with my surprise #4! I had a whole host of feelings, but the greatest were joy and excitement. 

In October 2012, when all the dust settled, and my pregnancy was over, yielding a beautiful, healthy boy, I was hoping that my health issues would be over as well. I had a bacterial infection in May of that year that was treated with a strong antibiotic. That was my third antibiotic within 3 months. In June of 2015, I developed a C. Difficle infection. Yuck and ugh. I did one round of antibiotics, seemed better, but then it reoccurred and had to do another round. All June was spent with horrible GI issues and an extreme difficulty in functioning. My health after that infection began to decline. 

I tried all the same diets, supplements, etc. but no improvement. My fatigue, strange dizziness, shortness of breath, abdominal pain, and now chronic diarrhea were nearly unbearable. In the fall of 2015, based on the recommendation of a dear friend I sought out a new GI doctor at IU Health. He was the first doctor in all these years that made me feel like he really listened. He welcomed my input and was patient with my need for persistent questions and understanding. Based on his orders, I began the most extensive GI workup imaginable. Now it was not only my journey for answers, it became my doctor's quest to find answers. One test would come back negative, he would reassess my symptoms and then order another test. 

However, I still had no answers for the abdominal pain that affected my ability to eat normally. A small meal would cause me to feel painfully full. I would belch profusely every time I ate. Upper abdominal pain would set in shortly after eating and wouldn’t let up for hours. My doctor took my concerns seriously, but all the tests he ordered always came back negative. I began to question myself. Am I a bored stay at home mom of 4 that is looking for some excitement in her life? Am I somehow unsatisfied with life and it is manifesting in my body? Because no physical cause could be found despite an extensive work up, I thought maybe it was psychosomatic. I began to feel very helpless and discouraged at this point in my health journey. All my efforts to find an answer led nowhere, all tests my helpful doctor ordered showed nothing, all research gave no clues. I was at a place of surrender. I remember very clearly one night in April 2016 in which I gave my whole health journey to God - all the pieces of info I was trying to fit together to show a clear picture. I could not make sense of it. I could not find an answer and my trying was maddening and devastating. I desperately and humbly asked God to solve this puzzle for me. Within a couple weeks my doctor told me he wanted to do an abdominal scan and his nurse would call me with details. I thought that sounded great. When she called and explained the procedure, I got seriously offended (self-advocacy skills run amuck?). “I have GI issues, why is he looking at my arteries?” Through her frustration, which was barely hidden if at all, she explained he knows what he is doing and he is checking for a rare condition. I sheepishly agreed to go to the appointment for an abdominal MRA with contrast. 

It was the fall of 2016 that I got the results. The MRA showed 50% stenosis with a hook like appearance of the celiac artery... suspicious for median arcuate ligament syndrome. A mesenteric artery ultrasound followed. It showed the hooked artery but 70% stenosis this time. Finally, weeks later, a catheter angiogram was done which showed 90+% stenosis of the celiac artery upon expiration. It was confirmed median arcuate ligament syndrome! There it was, an answer! An answer to a year and a half of extreme pain, diarrhea, belching, eating like a squirrel, and overall misery! The only treatment - surgery.

Next came the battle to find a surgeon qualified and knowledgeable about MALS. I went scouring the internet and stumbled upon (quite assuredly by God who was putting together all those puzzle pieces for me) a group on Facebook for people with MALS. Now I was “sitting” among hundreds of people from all over the world who had this condition, who had a similar story, who had a wealth of knowledge I could glean from. I learned about open and lap MALS surgery. I learned about nerves and the part they play in causing pain. I learned about the recovery. I learned which doctors and centers all over the US and the world are known for doing this and doing it well. I read published, peer-reviewed medical research articles. I studied! I learned so much and knew at the end of all that studying that I wanted an open surgery with the damaged nerves removed. Dr. Hsu from Connecticut was my first choice. He was highly recommended by many and after sending in all my medical info, receiving a call from the doctor himself, I began to understand why. He was extremely knowledgeable about MALS, his technique was exactly what I was hoping for, and he was so personable and understanding. 

Insurance has the final say for those of us on a limited income however. Dr. Hsu and his staff fought long and hard with my state Medicaid insurance company. My insurance company continued to say it was not medically necessary for me to have the surgery when all evidence stated otherwise. Really that was insurance’s way of saying that they wouldn’t pay for out of state coverage. After exhausting all avenues to get Dr. Hsu to do my MALS surgery, I began to look in Indiana. I had met with other local surgeons early on, but none of them had enough experience treating MALS to make me feel comfortable with them performing my surgery. I had searched online likely 50+ time for vascular surgeons in Indiana that do MALS surgeries and never found one where their website states it as one of the conditions they treat. However, one day a doctor in Indiana popped up in my search results. Dr. Thomas Webb in Indianapolis, among conditions he treats read “median arcuate ligament syndrome”! Another piece placed in the puzzle.

I met with Dr. Webb and after reviewing my records and listening to my story, he believed he could improve my symptoms and quality of life through surgery. His approach was exactly the approach I was hoping for – open MALS surgery, radically cutting back the MAL, and full removal of damaged celiac ganglion. I had surgery April 25th, 2017. Dr. Webb stated that not only was my celiac artery encased in scar tissue, but also the superior mesenteric artery and a portion of the aorta was restricted. He stated quite plainly post-op that there was no way my MALS surgery could have been successfully executed laparoscopically.

The pain post-op, the up and down extended recovery, and the extensive rehabilitation were every bit as excruciating as all my fellow Facebook MALS buddies had shared. But I knew I had turned the corner and that this surgery was successful, when after about 2-3 months I could eat a normal sized meal with zero pain or belching and normal bowel movements returned. My GI issues have been completely resolved! I no longer have any pain with eating, even very large meals!

In January of 2018, I returned to college to get my master’s in applied behavior analysis. I never would have imagined that I would feel well enough to handle a full load of graduate courses and a 20 hour a week graduate assistantship, while caring for our big family. But God is good and faithful. He solved my impossible-to-solve puzzle and led me to all the resources, people, and doctors I needed to get well. I would like to say that all my health issues are behind me. I realize that is not realistic for someone with active autoimmune disease. I likely will struggle with lingering chronic health issues for the rest of my life. But I am no longer plagued with debilitating abdominal pain from MALS. Surgery fixed that! 

My name is Chloé-Andréa. I am French and I am 24 years old. 

I was diagnosed with ehlers danlos syndrome in January 2017. 

I performed vascular assessments following this in March 2017.

It was during a vascular ultrasound that at that moment I was observed a narrowing of the celiac artery <50% which was then validated by a CT scan.

We did not know the cause yet, maybe I was born like that.

I had to check again 1 year later.

Unfortunately in January 2018 overnight I began to have excruciating stomach pains.

I thought at first that I had indigestion or others.

Except that at the end of the 4th day I was more and more suffering.

I could not eat without pain so I could not eat anymore.

Then came intense shortness of breath or even getting up from the couch was very hard.

I also had heart rhythm disorders, respiratory blockages.

The impression of stab wounds in the belly.

I then realized that it was my artery that was suffering, so I went to the emergency room or I did a scanner, my artery was short and tight.

The next day I went to see my doctor who told me that I needed to see a vascular surgeon urgently because I risked a cardiac arrest at any time.

I waited 3 weeks before seeing a surgeon.

At the appointment with the surgeon, he looks at my scanner in a room next door and come back 20 minutes later.

He it tells me that my artery is very sick, it is narrowed to 95%.

But I have a syndrome of ehlers danlos, he knows but only very little, so he gets in touch with another surgeon to take care of me at 1 o'clock from home.

He hospitalized me urgently, it was already 3 weeks that I was not feeding or hydrating.

I am kept 4 days before being transferred to another hospital.

I perform digestive examinations.

Then a vascular assessment by ultrasound.

This time my celiac trunk artery does not work much anymore and I also have a narrowing of the superior mesenteric artery.

Depending on the exam we suspected of a MALS, I am told what it is, it is difficult to be 100% sure and I am told that I must be operated.

I am waiting nourished by food pocket in intravenous, hydrate, anti coagulant, anti pains.

I was operated on February 20, 2018.

Before the operation knowing that I had ehlers danlos syndrome, the surgeon did not know if I would survive, if I would wake up after the operation.

I was very afraid of this operation.

The operation is good, i removed the arched ligament and muscle fibers that compress my artery celiac trunk.

After the operation it was excruciatingly difficult.

I suffered a lot. I had physical therapy every day at the hospital, I had to learn to sit, get up, walk, go up the stairs.

The staff had to come and wash me.

I stayed 1 month in the hospital.

I had a blood test 4 times a day, a catheter at the neck pose during the operation to feed me with a pocket ...

The problem is that I always suffer a lot and can not feed myself.

It was difficult because I was losing weight a lot and the doctors did not believe in my symptoms always present when I did not have the arched ligament anymore.

On the exams I always had a narrowing of the artery of the celiac trunk as important as before the operation.

The doctors made me believe for a long time that it was only digestive, that I had nothing, that it was impossible for my artery to create his symptoms.

I kept fighting because I knew that the only cause of my suffering was my artery nothing else.

Finally, my surgeon who had first operated on me recognized that many doctors did not want to operate on me, no one wanted to take any risk and above all nobody had ever seen my case.

In view of examinations and symptoms he decided to operate again.

He operated on November 21, 2018, in order to put a stent in the artery of the celiac trunk.

My artery was very narrowed and completely twisted.

I lost 20 kilos with MALS.

I did not manage to eat again right away because my stomach is shrinking during 11 months of no food.

I managed to eat properly again from February 2019.

My specialist in ehlers danlos syndrome has recognized that my case does not exist in the etiology of the disease, that I was the first. *

Today I'm better, I eat, I gained weight.

I'm alive when I thought I would not survive.

Thank you for taking the time to read me.

Thank you Google Translate !

*Although Chloe-Andrea's doctors were unaware at the time, MALS is frequently seen in EDS patients.