Median Arcuate Ligament Syndrome (MALS)

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?

@kariulrich

Hi everyone! Hope this finds you all more that just surviving today. MALS PALS just updated the Doctors List Today! So grateful to Robin Schrader for keeping it updated regularly.

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This is great! Thank you so much!

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@chicken

This is great! Thank you so much!

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You are very welcome!

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Anyone looking for pediatric MALS info… found this abstract today: https://www.liebertpub.com/doi/full/10.1089/lap.2013.0438

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Hello all, my name is Jinni and I am a 20-year-old college student. I have had stomach issues my entire life and went through extensive testing in 2017 during my senior year of high school. Everything came back normal and doctors only settled on the classic concepts of "stress," "GERD," "gastritis" or "IBS." I continue to have pain and discomfort when I eat, ranging from a tight, pressure-like feeling when I eat much or fast, then pain when it hits right under my ribcage, and then discomfort and nausea for hours afterward, and it's seeming to get worse over the last few weeks.

My uncle was just diagnosed with MALS, which is how I first heard of it. His symptoms seem much more severe than mine, but I can't get the idea of the possibility out of my head that I might have it too. I have seen no research on whether or not MALS could be hereditary, but I have seen that it is much more common in women. I'd like to talk to someone about this all, I am scared to move forward with testing. I have an appointment in a couple of weeks, but I am worried about bringing it up to my doctor because I don't want to hear anyone tell me that I am overthinking it or that I'm overreacting or that there are no more tests to be done. I am beyond frustrated that everything has come back normal because this much pain and discomfort just cannot be normal. I feel very alone in all of this because I feel like everyone is sick of hearing me complain when they all think I am fine.

I saw this connect group and hope I can get some thoughts/opinions on how to move forward if my symptoms even line up with what a MALS patient has, or just any other support going through this. I hope you all are doing well.

Best,
Jinni

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@jbdforisu

Hello all, my name is Jinni and I am a 20-year-old college student. I have had stomach issues my entire life and went through extensive testing in 2017 during my senior year of high school. Everything came back normal and doctors only settled on the classic concepts of "stress," "GERD," "gastritis" or "IBS." I continue to have pain and discomfort when I eat, ranging from a tight, pressure-like feeling when I eat much or fast, then pain when it hits right under my ribcage, and then discomfort and nausea for hours afterward, and it's seeming to get worse over the last few weeks.

My uncle was just diagnosed with MALS, which is how I first heard of it. His symptoms seem much more severe than mine, but I can't get the idea of the possibility out of my head that I might have it too. I have seen no research on whether or not MALS could be hereditary, but I have seen that it is much more common in women. I'd like to talk to someone about this all, I am scared to move forward with testing. I have an appointment in a couple of weeks, but I am worried about bringing it up to my doctor because I don't want to hear anyone tell me that I am overthinking it or that I'm overreacting or that there are no more tests to be done. I am beyond frustrated that everything has come back normal because this much pain and discomfort just cannot be normal. I feel very alone in all of this because I feel like everyone is sick of hearing me complain when they all think I am fine.

I saw this connect group and hope I can get some thoughts/opinions on how to move forward if my symptoms even line up with what a MALS patient has, or just any other support going through this. I hope you all are doing well.

Best,
Jinni

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@jbdforisu

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@jbdforisu I am so happy you found us and welcome to the group! Your fears are completely understandable, and as a MALS patient (Mother of 2 boys) I am always concerned that they will end up with this someday. There are some cases of MALS being familial, however, more research needs to be done. Here is a link to an abstract that you may want to read: https://www.ncbi.nlm.nih.gov/pubmed/21129525 As far as testing, you are symptomatic and I don't want you to be frightened about the workup, you need to be checked out to find the cause. Who is your appointment with? We are here for you, you are not alone. No matter what the diagnosis the MALS group is awesome in supporting those who have symptoms.

Liked by Jinni

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In reply to @marideth401 "@jbdforisu" + (show)

The symptoms you describe are very similar to my own which started a few years ago. There is much that is unknown about MALS including any congenital and hereditary aspects. I do find it interesting that your uncle has it though. Studies show that MALS is more common than they thought and some people exhibit no symptoms while others have severe, debilitating symptoms. I’ve had CT angiography with and without contrast, mesenteric duplex ultrasound to check blood flow through the celiac artery and compression of the celiac plexus, an MRA and MRV, a swallow test to check flow through the duodenum, and a jugular venogram. Have you had some of these tests done already? I have celiac artery compression syndrome (basically the same as MALS), Nutcracker Syndrome (renal vein compression) and pelvic congestion syndrome (L ovarian varicose vein). These diseases can sometimes present together. Do not let these doctors tell you this is all in your head. Remember that they work for you! Educate yourself and advocate for yourself. I am sending my records to a MALS surgeon in Connecticut for another opinion (Richard Tsu, MD). I found his name on the Facebook MALS Pals support group site. You might be interested in checking that out. I pray that you’ll get some answers and experience relief from these annoying, painful problems soon. Also, you are not alone! There are many of us.

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@marideth401

The symptoms you describe are very similar to my own which started a few years ago. There is much that is unknown about MALS including any congenital and hereditary aspects. I do find it interesting that your uncle has it though. Studies show that MALS is more common than they thought and some people exhibit no symptoms while others have severe, debilitating symptoms. I’ve had CT angiography with and without contrast, mesenteric duplex ultrasound to check blood flow through the celiac artery and compression of the celiac plexus, an MRA and MRV, a swallow test to check flow through the duodenum, and a jugular venogram. Have you had some of these tests done already? I have celiac artery compression syndrome (basically the same as MALS), Nutcracker Syndrome (renal vein compression) and pelvic congestion syndrome (L ovarian varicose vein). These diseases can sometimes present together. Do not let these doctors tell you this is all in your head. Remember that they work for you! Educate yourself and advocate for yourself. I am sending my records to a MALS surgeon in Connecticut for another opinion (Richard Tsu, MD). I found his name on the Facebook MALS Pals support group site. You might be interested in checking that out. I pray that you’ll get some answers and experience relief from these annoying, painful problems soon. Also, you are not alone! There are many of us.

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Where did you get all of those tests done? I have been very ill, and continue to get worse. Have lost an enormous amount of weight. ( Averaging 20 pounds per 21/2 months!) we live out in the boonies…far from good medical care!! I am praying to get a referral to Cleveland Clinic right away! Sure hoping it isn't too late for them to find out what is wrong and be able to help me!! Not sure there is going to be any coming back from whatever is wrong!!

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@sciograndma

Where did you get all of those tests done? I have been very ill, and continue to get worse. Have lost an enormous amount of weight. ( Averaging 20 pounds per 21/2 months!) we live out in the boonies…far from good medical care!! I am praying to get a referral to Cleveland Clinic right away! Sure hoping it isn't too late for them to find out what is wrong and be able to help me!! Not sure there is going to be any coming back from whatever is wrong!!

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Thank you @sciograndma @marideth401 and @kariulrich I have not lost any weight, however, I have been the same weight since I was 15 which is strange to me. I have always had stomach issues from epigastric to gastroparesis (never diagnosed but suggested by the doctor that did my endoscopy) as well as irregular menstrual issues. I have a history of headaches and migraines, depression and anxiety, and something strange I've noticed since reading case studies is the fact that I burp what seems like constantly, especially while and after eating. I also have a history of back pain and fatigue, but all of these symptoms are so vague and complained about by so many people that I've always dismissed them.

I am seeing my new family doctor as a routine checkup (different doc than the several that followed my symptoms in 2017). I have gone through many xrays, ct scans, I had an endoscopy done (showing a small hiatal hernia), that test where I swallowed nasty stuff and they watched it go through my system (showed severe acid reflux), and loads of bloodwork done. So much of my testing was done in an ER setting because the pain would always bring me in and I didn't have family doc until this year. I am scared of getting more workup done, both that they will find something really wrong like MALS, or that they will continue to tell me that I am fine. My adopted family thinks I am a hypochondriac, which has been really hard for me because I feel as though I can't talk about my symptoms to them but I don't want to go through all of this testing alone.

How do I bring this up to my doctor without him thinking I am crazy or have him convinced that it's just my gerd or IBD? He has been super great since I've been seeing him, but we haven't gone into detail about my stomach because we've been working on anxiety/depression stuff. I have also looked at the list of surgeons that have been recommended by patients. Only one is from Iowa! That scares me also. Am I able to ask for a ct scan of this artery? How do I know that they are educated enough to notice if it isn't normal?

I appreciate all of your support. I feel alone here at college with all of this discomfort.

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@jbdforisu

Thank you @sciograndma @marideth401 and @kariulrich I have not lost any weight, however, I have been the same weight since I was 15 which is strange to me. I have always had stomach issues from epigastric to gastroparesis (never diagnosed but suggested by the doctor that did my endoscopy) as well as irregular menstrual issues. I have a history of headaches and migraines, depression and anxiety, and something strange I've noticed since reading case studies is the fact that I burp what seems like constantly, especially while and after eating. I also have a history of back pain and fatigue, but all of these symptoms are so vague and complained about by so many people that I've always dismissed them.

I am seeing my new family doctor as a routine checkup (different doc than the several that followed my symptoms in 2017). I have gone through many xrays, ct scans, I had an endoscopy done (showing a small hiatal hernia), that test where I swallowed nasty stuff and they watched it go through my system (showed severe acid reflux), and loads of bloodwork done. So much of my testing was done in an ER setting because the pain would always bring me in and I didn't have family doc until this year. I am scared of getting more workup done, both that they will find something really wrong like MALS, or that they will continue to tell me that I am fine. My adopted family thinks I am a hypochondriac, which has been really hard for me because I feel as though I can't talk about my symptoms to them but I don't want to go through all of this testing alone.

How do I bring this up to my doctor without him thinking I am crazy or have him convinced that it's just my gerd or IBD? He has been super great since I've been seeing him, but we haven't gone into detail about my stomach because we've been working on anxiety/depression stuff. I have also looked at the list of surgeons that have been recommended by patients. Only one is from Iowa! That scares me also. Am I able to ask for a ct scan of this artery? How do I know that they are educated enough to notice if it isn't normal?

I appreciate all of your support. I feel alone here at college with all of this discomfort.

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I have had this severely since October. I have Cauda Equina Syndrome and, as is the case with that, I have frequent UTIs. In October, I had another one and the Dr (NP) who was seeing me at the time gave me an extremely strong antibiotic called Monurol. About 2 days after I took it, I could no longer eat w/o problems. I would retch mucous (never threw up food)…and it would be right after a meal. ER doctors gave me all kinds of different meds, but they all made me worse. Since October, I have lost nearly 65 pounds. Any Dr I have seen would just give me other meds. Begged to go into the hospital for tests…they would do out patient ones., and the all came back normal. So I was continually told it was all in my head. Consequently, I let things go WAY too long. Now I am desperate!!! Sure hope if I can get to Cleveland Clinic that some specialist will be able to find something!! I KNOW that the stress I have is NOT the cause, it is because I have not been able to find answers, and I continue to drop weight and get weaker and weaker!! Am at a point where I can do practically nothing!! Hoping my Dr will refer me to Cleveland Clinic!!!

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On Facebook there a group for MALS

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@marideth401

The symptoms you describe are very similar to my own which started a few years ago. There is much that is unknown about MALS including any congenital and hereditary aspects. I do find it interesting that your uncle has it though. Studies show that MALS is more common than they thought and some people exhibit no symptoms while others have severe, debilitating symptoms. I’ve had CT angiography with and without contrast, mesenteric duplex ultrasound to check blood flow through the celiac artery and compression of the celiac plexus, an MRA and MRV, a swallow test to check flow through the duodenum, and a jugular venogram. Have you had some of these tests done already? I have celiac artery compression syndrome (basically the same as MALS), Nutcracker Syndrome (renal vein compression) and pelvic congestion syndrome (L ovarian varicose vein). These diseases can sometimes present together. Do not let these doctors tell you this is all in your head. Remember that they work for you! Educate yourself and advocate for yourself. I am sending my records to a MALS surgeon in Connecticut for another opinion (Richard Tsu, MD). I found his name on the Facebook MALS Pals support group site. You might be interested in checking that out. I pray that you’ll get some answers and experience relief from these annoying, painful problems soon. Also, you are not alone! There are many of us.

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Dr. Richard Hsu

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Hi I’m 59 years old have been suffering with digestive issues for years. Just recently I was diagnosed with two small PEs in my left lung. During a follow up CT Scan I was told I have MALs. I’m just starting this journey and have not been able to eat much as well as extreme fatigue and constantly going back and forth to the hospital. I have an upper aortic aneurysm as well as irregular heart beat. I’m not sure what all is going on but I was told my body is deconditioned. I started trying ensure to see if it would help with my lack of eating and the pain in my stomach after I eat. It has not helped. I feel hopeless because so many things seem to be going wrong for me right now. I live in Maryland and will be seeing a Vascular Surgeon very soon. My gastrologist is sending me to Johns Hopkins to meet with a surgeon. He did tell me this was extremely rare.

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@jpol

I am a 52 year old male and I have diarrhea with nausea almost everday of my life. I have tested for many things but I just could never get relief. I somewhat learned to deal with the diarrhea by taking questran every morning before eating anything for 2 hours. If not I would get diarrhea within 10 minutes of eating my first meal everyday. I also get spells of severe abdominal pain with my stomach right in the middle under my ribs being ultra sore. I was recently hospitalized and they were thinking pancreatitis but they did a ct scan and found 75 percent stenosis of my celiac trunk artery. They say it is from vasculitis but the the ct scan clearly shows my ligament that attaches to my diaphragm is rapped around my celiac artery. The artery is only 2mm in dia now but the artery just past the ligament is 6.5 mm. It hurts almost all the time now but especially when I exhale. They want me to see a rheumatologist for treatment of vasculitis but I feel I actually have Mals syndrome. Here is a picture of my celiac artery.

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Here is the picture of my celiac

20190316_103224

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@jpol

I am a 52 year old male and I have diarrhea with nausea almost everday of my life. I have tested for many things but I just could never get relief. I somewhat learned to deal with the diarrhea by taking questran every morning before eating anything for 2 hours. If not I would get diarrhea within 10 minutes of eating my first meal everyday. I also get spells of severe abdominal pain with my stomach right in the middle under my ribs being ultra sore. I was recently hospitalized and they were thinking pancreatitis but they did a ct scan and found 75 percent stenosis of my celiac trunk artery. They say it is from vasculitis but the the ct scan clearly shows my ligament that attaches to my diaphragm is rapped around my celiac artery. The artery is only 2mm in dia now but the artery just past the ligament is 6.5 mm. It hurts almost all the time now but especially when I exhale. They want me to see a rheumatologist for treatment of vasculitis but I feel I actually have Mals syndrome. Here is a picture of my celiac artery.

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Here is picture I found showing how a normal celiac artery should look and also how one would look with Mals. Mine clearly looks like the Mals

20190316_024825

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