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

Ha ha Got to love spell check! Do have any motility issues?

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Not sure what you mean by motility issues?

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Kari you are so wonderful at answering the questions. What is it about Celiac Artery Compression Disorder that causes gastrointestinal disorders? Between the doctors telling me I had GERD, a small hiatal hernia and very mild diverticulosis over the past 18 years none of that seems to explain the constant pain I have and the fact that I do become constipated easily. And I eat a mostly vegetarian, high fiber diet. I feel so much like I am being dismissed and written off by the diagnosis of the day instead of finding out the real problem. I am so glad this page is here. Still waiting to see a vascular surgeon familiar with this problem.

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@lmtuska

Hello, my 16 yr old Daughter has been diagnosed with MALS. We are coming to Mayo, MN, in February for an open surgery with a Vascular Surgeon. I, too, am interested in connecting with others to best understand this condition, follow up care and research resources. I would be interested in the webinar. Thank you Colleen!

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What doctor at mayo do you see? Was it in Jacksonville fl?

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What Mayo CLinic do you use? Is it in Jacksonville, FL?

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@bpayne

What Mayo CLinic do you use? Is it in Jacksonville, FL?

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I see Dr. Oderich at Mayo Clinic Rochester: http://www.mayoclinic.org/biographies/oderich-gustavo-s-m-d/bio-20054708

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@cornishrex

Kari you are so wonderful at answering the questions. What is it about Celiac Artery Compression Disorder that causes gastrointestinal disorders? Between the doctors telling me I had GERD, a small hiatal hernia and very mild diverticulosis over the past 18 years none of that seems to explain the constant pain I have and the fact that I do become constipated easily. And I eat a mostly vegetarian, high fiber diet. I feel so much like I am being dismissed and written off by the diagnosis of the day instead of finding out the real problem. I am so glad this page is here. Still waiting to see a vascular surgeon familiar with this problem.

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I wonder if it is a couple issues that cause the GI symptoms. Vascular problems can lead to intestinal angina. Then we have nerve related issues… so many possibilities! I feel for our doctors trying to sort out the symptoms.

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My daughter is 18 and was diagnosed with MALS and we would most appreciate to hear how people’s experiences were with surgery ? My daughter was recommended to have the lap version however there seems to be many posts including in medical literature saying a nerve block or other nerve procedure must be done for a higher success. My daughter can’t eat without crippling pain and is loosing weight at a fast pace. I am grateful for this space looking forward to any and all feedback as we fall forward to a decision. Thank you.

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@worriedmom18

My daughter is 18 and was diagnosed with MALS and we would most appreciate to hear how people’s experiences were with surgery ? My daughter was recommended to have the lap version however there seems to be many posts including in medical literature saying a nerve block or other nerve procedure must be done for a higher success. My daughter can’t eat without crippling pain and is loosing weight at a fast pace. I am grateful for this space looking forward to any and all feedback as we fall forward to a decision. Thank you.

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Welcome to Connect, Rho. I can imagine that you are worried about your daughter. We have a few members here who can share their experiences with surgery for MALS with you. Please meet Kari @kariulrich and Lisa @lmtuska. In this discussion thread, Kari has also shared some valuable information about preparing for surgery that I think your daughter and you will find very valuable.

Do you have specific questions or concerns that you’d like to ask?

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@worriedmom18

My daughter is 18 and was diagnosed with MALS and we would most appreciate to hear how people’s experiences were with surgery ? My daughter was recommended to have the lap version however there seems to be many posts including in medical literature saying a nerve block or other nerve procedure must be done for a higher success. My daughter can’t eat without crippling pain and is loosing weight at a fast pace. I am grateful for this space looking forward to any and all feedback as we fall forward to a decision. Thank you.

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Thank you, everyone! We are just exploring our options before we proceed with the surgery. Hearing people’s concerns and experiences help us wrap our head around all the possibilities. Thank you.

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@worriedmom18

My daughter is 18 and was diagnosed with MALS and we would most appreciate to hear how people’s experiences were with surgery ? My daughter was recommended to have the lap version however there seems to be many posts including in medical literature saying a nerve block or other nerve procedure must be done for a higher success. My daughter can’t eat without crippling pain and is loosing weight at a fast pace. I am grateful for this space looking forward to any and all feedback as we fall forward to a decision. Thank you.

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@worriedmom18 I would recommend a celiac block prior to surgery, from what I understand it is a good diagnostic indicator for a successful surgery. I recently had another celiac block, and so far it has been helpful. I have had 2 open surgeries for MALS. I understand the crippling pain your daughter is going through and my heart goes out to your family and her. A nerve block is temporary so that is something to keep in mind. How has your daughter been dealing with the pain? How is her weight? Any other symptoms? Many people with MALS also have problems with malnutrition and GI problems.

Liked by Rho

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Hi I have had open surgery for celiac and superior mesenteric arteries. I had extreme pain, thought it was bad stomach issue. I have had ulcers, and stomach issues. I went to er to get pain relief and dr insisted on ct scan, good thing. It showed my arteries were narrow. I had no idea what that meant. He said I had to see a vascular surgeon. My primary referred me and next thing I know he tells me I need this major open surgery now. My peak systolic velocity for both arteries were off the charts. I had no idea of how serious this was. I was a special education teacher and told the school I would be back in a month, that was Feb. 2014 and I am still suffering and not working. During the surgery they found they were compressed by my diaphragm. Surgeon said this was very rare, and to have both arteries. He published a paper on me. Surgery was successful. I did get some relief after the surgery. I also have chronic fatigue and the surgery brought it out of remission. Went back in July of the same year and they were narrowing again. My dad passed away suddenly at this time, this was extremely difficult for me and I basically didn’t ‘hear’ they were narrowing again. My mom had beginning dementia. I was POA, sisters weren’t happy about that, lead to major stress. I was always the one that was going to take care of mom. She got worse after dad’s death. My health just spiraled down. I was taking care of her making sure she was eating and all that, sisters didn’t do anything so I really had no recovery time and that didn’t help. I then needed another surgery. They wanted to do and open surgery, but they knew my health would not allow it. I got 2 stents put in Sept. 2015. But during all this I felt horrible and went to a naturopathic dr. she tested me for sibo and it was positive. Couldn’t get the meds, way to expensive, took almost a year to get them, tried them didn’t work. Also had an ulcer during this time. (Oh I wonder why)ha ha. Anyway it was hard to get into my GI dr. Was scheduled for another endoscopy and my mom, who was living with me, had a stroke. She passed a few days later. So again I put my health on back burner. My primary wanted me to see a gi doc consistently and went to another. He was saying that he can’t get rid of the sibo due to the blood flow of my arteries. A vicious cycle. He really didn’t treat me. I then had an angiogram and they said they were ok. They are patent, but still narrowed. Went to a great GI. I was tested positive for sibo on three tests during this time. She started to treat sibo. I got the Xifaxim, eased up a little but like 2 days after all symptoms back. After doing tons of research I learned that you get tested take the meds, then must get retested to see where the levels are at and so on. She was leaving the practice and I was moving and she wanted me to go to Mayo.
Sorry so long, but this is really summed up of it all. Now I am at Mayo. They are doing a lot of testing. I was also referred for the vascular and was called for appointment, but had no insurance at the time and could not afford to go. I thought they look at total picture, but they asked me if I was also going to make an appt. with vascular dept. I told them right now the SIBO is killing me worse. I thought they would both be talking to each other. My surgeon said I was basically cut in half and everything was out on the table. Now with that said, there is no way that my anatomy is not altered. Plus the blood flow factor into the stomach to keep it alive.
well they did a bacterial overgrowth test. If I had known what they were going to do I wouldn’t have done it . It was a glucose test for only 2 hours. All published works shows that you need at least a 3 hour test and it needs to be done with lactulose. The glucose does not get to the last 12 to 15 feet of the small intestine. and right after the second hour is when it will hit the colon. My test said negative and clinical correlation. I emailed my dr. about this and she didn’t address it. I have had 3 positive breath tests for SIBO, my symptoms are even worse, there is no way that I don’t have it.
I also am getting more chest pain and that concerns me about the arteries. From one month to the next, it can and has changed. May my ultrasound said patent, but sever stenosis. Mayo dr. said then blood flow is fine, surgeon said patent. Yes I don’t need a surgery, but it is still sever stenosis. I am tired of being my own dr. and doing all the research. It is hard sometimes to distinguish the pain from the sibo, or the artery or an ulcer at this point. I continue to try and learn as much as I can and I am hoping mayo will help me. I believe it is mostly the sibo but I need a regiment for the antibiotics and possibly herbal meds.
So has anyone with this vascular disease also been diagnosed with SIBO, and if so are you at Mayo and who is your dr.
Again, so sorry for being so long, but wanted whoever reads this to kind of understand my situation. The CFS, SIBO and Vascular .

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@jmmb

Hi I have had open surgery for celiac and superior mesenteric arteries. I had extreme pain, thought it was bad stomach issue. I have had ulcers, and stomach issues. I went to er to get pain relief and dr insisted on ct scan, good thing. It showed my arteries were narrow. I had no idea what that meant. He said I had to see a vascular surgeon. My primary referred me and next thing I know he tells me I need this major open surgery now. My peak systolic velocity for both arteries were off the charts. I had no idea of how serious this was. I was a special education teacher and told the school I would be back in a month, that was Feb. 2014 and I am still suffering and not working. During the surgery they found they were compressed by my diaphragm. Surgeon said this was very rare, and to have both arteries. He published a paper on me. Surgery was successful. I did get some relief after the surgery. I also have chronic fatigue and the surgery brought it out of remission. Went back in July of the same year and they were narrowing again. My dad passed away suddenly at this time, this was extremely difficult for me and I basically didn’t ‘hear’ they were narrowing again. My mom had beginning dementia. I was POA, sisters weren’t happy about that, lead to major stress. I was always the one that was going to take care of mom. She got worse after dad’s death. My health just spiraled down. I was taking care of her making sure she was eating and all that, sisters didn’t do anything so I really had no recovery time and that didn’t help. I then needed another surgery. They wanted to do and open surgery, but they knew my health would not allow it. I got 2 stents put in Sept. 2015. But during all this I felt horrible and went to a naturopathic dr. she tested me for sibo and it was positive. Couldn’t get the meds, way to expensive, took almost a year to get them, tried them didn’t work. Also had an ulcer during this time. (Oh I wonder why)ha ha. Anyway it was hard to get into my GI dr. Was scheduled for another endoscopy and my mom, who was living with me, had a stroke. She passed a few days later. So again I put my health on back burner. My primary wanted me to see a gi doc consistently and went to another. He was saying that he can’t get rid of the sibo due to the blood flow of my arteries. A vicious cycle. He really didn’t treat me. I then had an angiogram and they said they were ok. They are patent, but still narrowed. Went to a great GI. I was tested positive for sibo on three tests during this time. She started to treat sibo. I got the Xifaxim, eased up a little but like 2 days after all symptoms back. After doing tons of research I learned that you get tested take the meds, then must get retested to see where the levels are at and so on. She was leaving the practice and I was moving and she wanted me to go to Mayo.
Sorry so long, but this is really summed up of it all. Now I am at Mayo. They are doing a lot of testing. I was also referred for the vascular and was called for appointment, but had no insurance at the time and could not afford to go. I thought they look at total picture, but they asked me if I was also going to make an appt. with vascular dept. I told them right now the SIBO is killing me worse. I thought they would both be talking to each other. My surgeon said I was basically cut in half and everything was out on the table. Now with that said, there is no way that my anatomy is not altered. Plus the blood flow factor into the stomach to keep it alive.
well they did a bacterial overgrowth test. If I had known what they were going to do I wouldn’t have done it . It was a glucose test for only 2 hours. All published works shows that you need at least a 3 hour test and it needs to be done with lactulose. The glucose does not get to the last 12 to 15 feet of the small intestine. and right after the second hour is when it will hit the colon. My test said negative and clinical correlation. I emailed my dr. about this and she didn’t address it. I have had 3 positive breath tests for SIBO, my symptoms are even worse, there is no way that I don’t have it.
I also am getting more chest pain and that concerns me about the arteries. From one month to the next, it can and has changed. May my ultrasound said patent, but sever stenosis. Mayo dr. said then blood flow is fine, surgeon said patent. Yes I don’t need a surgery, but it is still sever stenosis. I am tired of being my own dr. and doing all the research. It is hard sometimes to distinguish the pain from the sibo, or the artery or an ulcer at this point. I continue to try and learn as much as I can and I am hoping mayo will help me. I believe it is mostly the sibo but I need a regiment for the antibiotics and possibly herbal meds.
So has anyone with this vascular disease also been diagnosed with SIBO, and if so are you at Mayo and who is your dr.
Again, so sorry for being so long, but wanted whoever reads this to kind of understand my situation. The CFS, SIBO and Vascular .

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Thank you for sharing your experience and medical information. We go for a second opinion soon at another teaching hospital. I appreciate everyone”s feedback it will help my daughter and I navigate this difficult condition with less fear and more confidence. Praying you feel better soon and get back to teaching.

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My daughter is an 18 year old college student. She was diagnosed with MALS from Kaiser, she was treated with a laparoscopic procedure three months ago, the symptoms subsided. She began training with her college basketball team this week and the symptoms flared up. She’s lost 63 pounds because she can not eat, over 1/3 of her body weight. She played basketball since a young age and was very healthy baby and child. I’m lost as parent. Her father and I opted out of the stint being placed in her because of her age and the invasiveness of the surgery. I’m requesting an out of network vascular surgeon because the prior specialist has only treated this case one time. In Heinz sight we should have gotten a second opinion, but after 20 plus appointments, during her first year of college, we were just happy to have an answer, I feel we ruch

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