Median Arcuate Ligament Syndrome (MALS)

Posted by Kari Ulrich, Alumna Mentor @kariulrich, Dec 26, 2016

I am looking for other patients that have been diagnosed with Median Arcuate Ligament Syndrome. Although it is caused by compression of the celiac artery many people experience abdominal pain after eating, diarrhea, food avoidance. Usually the first doctors they see are GI doctors. It is a diagnosis that is made after everything else is ruled out. I am curious if anyone else has had surgery?

@lasirvent

Have you been to a Vascular Surgeon? He’s the one who ordered my CT and Doppler Ultrasound of Abdomen and pelvic.

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No yet because she does have part of her bowel that is not working. She had major bowel surgery at birth. And recently had a partial bowel obstruction in feb and our peds surgeon said there was part of her bowel that is not peristalsing. SO we are having surgery this friday for that and if that doesn't fix it MALS is our next thing. We have been very adamant about looking back at her other CTs and MRI with contrast she had in the mean time. Such a waiting game

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@lasirvent

I don’t know where you live, but we traveled from Arizona to Connecticut to have surgery with Dr. Hsu bc no other surgeon has the knowledge and experience that he has. Check his education, it’s impressive! I got so tired of going to different doctors and they all told me it’s IBS or abdominal migrane. I’m almost 4 months out and feeling better every day and no horrible mals pain.

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I am bringing my son to Dr. Hsu for surgery, and would love some feedback on recovery time after surgery. How long were you down/home and how mobile/active are you now, 4 months out?

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I had surgery with Dr. Hsu in Jan. 15, 2020. I was in the hospital for 4 days. We were there for 14 days. It’s been 4 months. It’s a roller coaster ride but I have no mals pain. I’m just dealing with ibs and healing. Have you checked the Facebook Mals Awareness group? They’re wonderful!

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What is the difference between celiac disease and MALS?

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When a celiac person ingests gluten, his or her immune system will attack against its own body's tissue. Whereas, if a person is gluten intolerant, the consumption of gluten will cause short-term bloating and belly pain. Unlike celiac disease, gluten intolerance doesn't usually cause long-term harm to the body.

MALS is Nerve irritation and or damage can cause disturbances with myoenteric electrical activity to the stomach resulting in the symptoms. MALS symptoms manifest as numerous gastrointestinal complaints and can range from intermittent mild to chronic debilitating that are triggered after eating or exercise.

I copied these definitions. Hope this helps.

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@helenfrances – I just want to add to the MALS description. MALS stands for Median Arcuate Ligament Syndrome. The ligament originated from the diaphragm. It can happen that the ligament presses on the celiac artery ( supplies blood to many organs and intestines). This causes diminished blood flow in the celiac artery. This becomes a problem after meals when intestines need to digest- can cause severe pain, like the coronary arteries with exercise.
I had surgery for this- ligament cut and later needed a stent to keep it open. 5 years later- I’m fine. I think of MALS as an anatomical problem. Celiac disease is an autoimmune condition where the body attacks itself in the intestinal lining- leading to malabsorption.

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I was recently was diagnosed with Median Acute Ligament syndrome . Have had this pain for years , but was manageable. Almost two years ago it hit and has not let its grip . Nausea, diarrhea, pain, gas, belching, back pain, exhaustion. I’m at the end of my rope mentally. Cardiologist found, he referred me back to my general practitioner she referred me to a vascular surgeon. The vascular surgeon although very nice was admittedly in over his head and although he had heard of mals; he had no idea what to do with me. He ended up writing me a referral to ; medical care of my own for a specialist in MALS. My husband of 35 years doesn’t quite seem to understand; I had to let go of my job almost a year ago September I just feel like my whole life is falling apart and I just don’t know what kind of decisions to make I’m just so overwhelmed and confuse. Called a dr in Cleveland metro hospital And dr at u of m. ; These Establishments Have to review my records and then review to see if they can take on my case.??? While I continue to suffer! This is a lot for someone who is in constant pain. To do anything at all I use cannabis and Kratom. I just want out ! I’m slipping in this rabbit hole and I don’t know how to hang on much longer . Seeing a counselor once a week and I know my husband doesn’t want that.either. Any answers

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@tahardy24

I was recently was diagnosed with Median Acute Ligament syndrome . Have had this pain for years , but was manageable. Almost two years ago it hit and has not let its grip . Nausea, diarrhea, pain, gas, belching, back pain, exhaustion. I’m at the end of my rope mentally. Cardiologist found, he referred me back to my general practitioner she referred me to a vascular surgeon. The vascular surgeon although very nice was admittedly in over his head and although he had heard of mals; he had no idea what to do with me. He ended up writing me a referral to ; medical care of my own for a specialist in MALS. My husband of 35 years doesn’t quite seem to understand; I had to let go of my job almost a year ago September I just feel like my whole life is falling apart and I just don’t know what kind of decisions to make I’m just so overwhelmed and confuse. Called a dr in Cleveland metro hospital And dr at u of m. ; These Establishments Have to review my records and then review to see if they can take on my case.??? While I continue to suffer! This is a lot for someone who is in constant pain. To do anything at all I use cannabis and Kratom. I just want out ! I’m slipping in this rabbit hole and I don’t know how to hang on much longer . Seeing a counselor once a week and I know my husband doesn’t want that.either. Any answers

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Hi @tahardy24 and welcome to Mayo Clinic Connect. You'll notice that I moved your message to this longstanding MALS discussion group in the Digestive Health group (https://connect.mayoclinic.org/group/digestive-gastrointestinal-problems/) I did this so that you can connect with other members living with MALS like @astaingegerdm @kariulrich @jmmb @lasirvent @jayhawk57 @redhead63 @ukmalsman and more.

Tahardy, while your photo smiles, I can hear the frustration in your words, how you're fed up of the pain and lack of understanding from professionals and from those around you. Here, you'll find people who get it. I know you'll get some strategies of how to be heard. I'm glad that you're seeing a counselor, too despite objections from others. It's important to have focused time on you. It is typical that referrals will be reviewed before getting an appointment. Did you self-refer or did your GI specialist make the referral for you to Cleveland Clinic and UofM?

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@tahardy24

I was recently was diagnosed with Median Acute Ligament syndrome . Have had this pain for years , but was manageable. Almost two years ago it hit and has not let its grip . Nausea, diarrhea, pain, gas, belching, back pain, exhaustion. I’m at the end of my rope mentally. Cardiologist found, he referred me back to my general practitioner she referred me to a vascular surgeon. The vascular surgeon although very nice was admittedly in over his head and although he had heard of mals; he had no idea what to do with me. He ended up writing me a referral to ; medical care of my own for a specialist in MALS. My husband of 35 years doesn’t quite seem to understand; I had to let go of my job almost a year ago September I just feel like my whole life is falling apart and I just don’t know what kind of decisions to make I’m just so overwhelmed and confuse. Called a dr in Cleveland metro hospital And dr at u of m. ; These Establishments Have to review my records and then review to see if they can take on my case.??? While I continue to suffer! This is a lot for someone who is in constant pain. To do anything at all I use cannabis and Kratom. I just want out ! I’m slipping in this rabbit hole and I don’t know how to hang on much longer . Seeing a counselor once a week and I know my husband doesn’t want that.either. Any answers

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Ugh! So sorry for you situation. Many of us have felt your frustration. The good news is you have a diagnosis. I live in the Dallas area and really had hoped to find a doctor closer than the Cleveland clinic and or the Mayo Clinic (although I would have been open to it if I had no other option). Once I got the diagnosis the search was on for a doctor. It took 3-4 months between diagnosis and surgery. There is a doc in Fort Worth with a lot of experience with MALS. I contacted his office. They told me to fax all my records and then called to tell me he would not take my case. No explanation.

That was very disappointing. After the diagnosis I tried waiting to see if I could live with it. So to be turned down after deciding to move forward made me question everything again. My GP recommended one of the best vascular surgeons she knew. When I saw him he said I know who you need. With no hesitation he recommended another vascular surgeon who would do it robotically. I met with him and had the surgery.

Al that to say, be encouraged. From the stories I have read on here, it is not a quick process. I know that feeling of just wanting to rid yourself of the constant pain and get back to normal. Hang in there. You will make it. The counseling is good. You need to take care of yourself in other ways. Counseling, foot massages, whatever makes you feel good because the constant pain and awareness of your condition can suck the life out if you. Not to mention people like your family And friends who just don’t get it.

Keep hanging on!

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Hi everyone. I am new here. I wanted to share my story and maybe get some advice. My whole life I had some kind of gut problems and always felt terrible. Fatigue, anxious, depressed. For years and years I was told it was just mental health. After a trip to Peru about seven years ago, my gut started to get really bad…bloating, reacting to things I would eat, pain, massive diarrhea. Doctors said IBS and depression. 3 years ago, after a bout of antibiotics (for what was incorrectly diagnosed as a UTI when it was a yeast infection!) I got markedly worse. Still they said depression/anxiety and IBS. Started getting terrible headaches and pains in my hands and feet which would discolor. I started having numbness also and swelling in my legs. Was put on Zoloft and started having breathing problems and my nails would turn blue and grey. I looked about 8 months pregnant all the time (except first thing in the morning). Literally hundreds of doctors appointments later (5 neurologists, six gastros, 4 rheumatologists, pulmonologists, cardiologists…you name it) my gastro ran an mri angiography. Diagnosed MALS, pelvic congestion, May-Thurner, and nutcracker syndrome. (also my complements went low–they said connective tissue disorder….unspecified). Saw an IR doc that said doctors don't believe MALS is a thing because so many people have a compressed celiac artery. Saw a gi surgeon said my pain could not be because of this because I have collateral flow. Around this time I also got diagnosed with an autoimmune autonomic neuropathy. Just this year my liver enzymes went up and had a liver biopsy. They don't know why. I have terrible RUQ pain (my gallbladder EF is 98.3% which I am told is "normal") and I get electric shocks in my mid abdomen. Sometimes I feel like I am having a heart attack. I have terrible pelvic pain and have started having hormone problems (excess hair, dark hair, abnormal periods–I either bleed heavily for months at a time or I barely have a period at all). I cannot breathe most days, like asthma. I am exhausted and some days I can eat some days I can't. I finally found an IR doctor that believes in the pelvic congestion and the nutcracker and may Thurner and we are going to try to do a venogram (I think it is called) and seal up the problem veins. Anyway, I am trying to find a good MALS doctor on the west coast. I am at Stanford now and have not been treated very well. I applied to Mayo four times and have been rejected each time. Anyone know of any good MALS docs in California? By the way I also got diagnosed with Hashimoto's (only took 3 endocrinologists to figure that one out). I feel very frustrated and angry because my symptoms were blamed on mental health for so long and once they found the neuropathy they blamed everything on that. Still no one can figure out the weird microvascular issues I have with my nails. Now, half the doctors I see just say "wow this is a lot you are dealing with. but I am not the one to help you." Or they tell me to take some other horrid medicine that causes side effects and treat me as noncompliant when I won't take it anymore. Would love any suggestions on doctors for MALS. Also, I would be curious if anyone had any endocrine issues because of their vascular issues. I found one article about such a thing but would like to hear from others.

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@tahardy24

I was recently was diagnosed with Median Acute Ligament syndrome . Have had this pain for years , but was manageable. Almost two years ago it hit and has not let its grip . Nausea, diarrhea, pain, gas, belching, back pain, exhaustion. I’m at the end of my rope mentally. Cardiologist found, he referred me back to my general practitioner she referred me to a vascular surgeon. The vascular surgeon although very nice was admittedly in over his head and although he had heard of mals; he had no idea what to do with me. He ended up writing me a referral to ; medical care of my own for a specialist in MALS. My husband of 35 years doesn’t quite seem to understand; I had to let go of my job almost a year ago September I just feel like my whole life is falling apart and I just don’t know what kind of decisions to make I’m just so overwhelmed and confuse. Called a dr in Cleveland metro hospital And dr at u of m. ; These Establishments Have to review my records and then review to see if they can take on my case.??? While I continue to suffer! This is a lot for someone who is in constant pain. To do anything at all I use cannabis and Kratom. I just want out ! I’m slipping in this rabbit hole and I don’t know how to hang on much longer . Seeing a counselor once a week and I know my husband doesn’t want that.either. Any answers

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I feel the same. My whole life is falling apart. My husband also does not understand, although he tries to. I am a shell of a human at this point. All friends have disappeared because I can no longer do any of the activities I used to. I feel like the medical community has completely failed me on so many levels. I am 39 and put off having kids because I was so ill the last ten years. We kept waiting for things to "get better" and they have only gotten worse. Worst of all, no doctor I speak with can provide any real clarity on any of my symptoms. I did group and individual therapy for two years (twice a week!) and was repeatedly told I have "conversion disorder." I still do therapy now, but the trauma from being treated as if you are completely insane is so deep. I have many issues, and it is really hard to know that everything I ever complained about was true and I was told for years not to trust myself and what I felt.

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@jasoncollins – I can’t imagine what your life is like with so many different problems making your life miserable.
I had MALS, operated on in SC. I also have had GI autoimmune disease.
You have two diagnosed autoimmune disorders- the autonomic neuropathy and Hashimoto’s. It is also possible that you have small vessel vasculitis
With one autoimmune disorder you often get more.
There is also celiac disease that could cause many of your GI problems. Many with celiac also have Hashimoto’s. Were you tested for celiac?
I don’t agree with the one doctor that said MALS cannot cause the pain because of collaterals.
I had collaterals too and severe pain.
I have also been told many times it’s all in my head. The only thing wrong with my head was getting upset about undiagnosed misery and losing any social life and friends I had.
I do believe you belong at Mayo. Do you have any doctor that could help refer you?
The doctor could also help list your different problems in order and briefly describe test results, treatments etc.
Please get back to us!

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Hi everyone, I’m new here and very new to MALs. For starters I have been told that I have lupus for about 2 years now with crazy bloodwork, after a recent pericarditis episode and a ct of my chest my cardiologist and gastroenterologist found the MALs and referred me to a general surgeon. Being that I’m so new to this I really don’t understand what happens from here and would love some insight and what to expect. I know my dr mentioned surgery and I’m a bit nervous about that, being 28 and a mother of 2 young children it would be hard to manage household duties with the time frame that they mentioned that it takes for recovery. Any insight would be much appreciated

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@jashetta

Hi everyone, I’m new here and very new to MALs. For starters I have been told that I have lupus for about 2 years now with crazy bloodwork, after a recent pericarditis episode and a ct of my chest my cardiologist and gastroenterologist found the MALs and referred me to a general surgeon. Being that I’m so new to this I really don’t understand what happens from here and would love some insight and what to expect. I know my dr mentioned surgery and I’m a bit nervous about that, being 28 and a mother of 2 young children it would be hard to manage household duties with the time frame that they mentioned that it takes for recovery. Any insight would be much appreciated

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I also have valvular heart disease where almost all of my heart valves are regurgitating so I’m a little scared for surgery

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@jashetta

Hi everyone, I’m new here and very new to MALs. For starters I have been told that I have lupus for about 2 years now with crazy bloodwork, after a recent pericarditis episode and a ct of my chest my cardiologist and gastroenterologist found the MALs and referred me to a general surgeon. Being that I’m so new to this I really don’t understand what happens from here and would love some insight and what to expect. I know my dr mentioned surgery and I’m a bit nervous about that, being 28 and a mother of 2 young children it would be hard to manage household duties with the time frame that they mentioned that it takes for recovery. Any insight would be much appreciated

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There’s a Facebook group called Mals Awareness that is a wealth of information. I had mad-had surgery in January. They have been my lifeline.

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