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?

Came across a good article today, thought I would share: https://www.jvascsurg.org/article/S0741-5214(18)30278-7/fulltext

Liked by ukmalsman

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I was getting a ct scan to look for Chrons and it showed up….

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@kariulrich

Came across a good article today, thought I would share: https://www.jvascsurg.org/article/S0741-5214(18)30278-7/fulltext

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With all due respect, That is a horrible article because it says there are many psychiatric diagnoses among people with MALS. It should have said “psychiatric MISdiagnoses” because most of us with MALS have had some physicians use a psychiatric diagnosis as a wild card when they don’t know to check for MALS. This article will only serve as another barrier to getting the right tests and treatment. The majority of us have been misdiagnosed; the article didn’t even check to see if those psychiatric comorbiditues were errors.

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I understand your concerns with the article but I believe it is a relavent and necessary topic. You may have misunderstood the conclusions are that patients that have undergone surgical intervention have improved quality of life. I believe many MALS patients experience situational anxiety and depression, I definitely have. That does impact the success of a surgery…any surgery not just MALS. Also many come into surgery already on pain medication and that also impacts the outcomes of surgical success according to the research available. I believe this article is supportive of the MALS patient as a whole, and address issues that a relavent to all of us.

Liked by ukmalsman

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@bl3ss3d

Hi @kariulrich, I was just diagnosed with MALS and I am currently being tested to see if I will need surgery. I am being told I will go to California if it is needed. I also have POTS so flying is tough. I have SIBO and high histamine reactions as well so I have to be real careful with what I eat. I am quite apprehensive about surgery. I wondered if you had the laparoscopic procedure as well? Is there a reason why either or is preferred? I have also heard that some end up needed surgery twice. Was this the case for you and if so, can you share why? Finally, I thought my GI doctor stated there is a 50/50 survival, but I think she meant a 50/50 success rate. I will ask her when I return to see her. I just wondered about anything you could advise to ease my worry. I appreciate the sharing.

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@bl3ss3d Welcome to our group. I also have POTS and understand why you would not want to fly for a medical procedure! I had an open surgery, I also have a vascular disease and with my additional diagnosis it was better for me to have open. I have heard very good things about both procedures, and I feel the biggest question is to find out how familiar your surgeon is with MALS, what are the success rates for that facility. I believe she meant 50/50 success rate…but it really depends on the person. How long have they had MALS, adult versus pediatric… have you been on pain medication and how long, have you had a successful celiac block, those are some pieces of the puzzle that help guide the surgeon to determine if you are a good surgical candidate. So happy you found us, we are a small group but appear to be growing rapidly, which only shows you we may not be as rare a some think.

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@kariulrich

Hi @jayson so happy you found us, welcome to Mayo Clinic Connect! First, deep breath. I know it seems overwhelming but all that your doctors are doing is actually necessary, right now with the information we have available MALS is an acquire diagnosis yet other diagnosis (differential diagnosis) must be ruled out before you can start treatment options for MALS. It is a frustrating but necessary step. Often times all GI work up will be normal in MALS patients. Most vascular surgeons want you to have a comprehensive GI work up and vascular work up before they start with treatment options. I am using the word MALS with you … have they said that to you… celiac compression can also be caused by vascular disorders… either way you are at the right place. You have a good vascular surgeon it sounds like, he is right that MALS is a diagnosis of exclusion. A high grade stenosis will be addressed, but again it is a comprehensive work up. Please feel free to ask questions. There are some amazing people on this site and they have a wide range of experience.

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So by having a high grade stenosis of the Celiac Artery, what would be the next steps after the full GI work up?

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Does anyone have any info on the laproscopic robotic surgery? recovery time, and sucess?

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Thank you for sharing hope you can help. I woke up the day after Christmas in severe pain on my left side below my ribs. I thought it was constipation. After a week of pain and constipation I was able to get a colonoscopy and endonoscopy. That found nothing. I than did a ct scan that found the Mals. Now I’ve had another ct to see how blocked it is and after seeing a few dr.s was sent to a vascular surgeon he seems to think it’s a sore muscle. He said I would be vomiting and have Nausea when I eat. However I can’t eat much food and I do get a stomach ache and the throbbing pain has NEVER STOPPED. I also have continued the constipation issue. I’m getting a 2nd opinion tomorrow from another vascular surgeon. Can you give me advice on what I should ask him? I desperately want to get back to health. I am 47 & have always been healthy and exercised daily until this.

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@mscobee

Thank you for sharing hope you can help. I woke up the day after Christmas in severe pain on my left side below my ribs. I thought it was constipation. After a week of pain and constipation I was able to get a colonoscopy and endonoscopy. That found nothing. I than did a ct scan that found the Mals. Now I’ve had another ct to see how blocked it is and after seeing a few dr.s was sent to a vascular surgeon he seems to think it’s a sore muscle. He said I would be vomiting and have Nausea when I eat. However I can’t eat much food and I do get a stomach ache and the throbbing pain has NEVER STOPPED. I also have continued the constipation issue. I’m getting a 2nd opinion tomorrow from another vascular surgeon. Can you give me advice on what I should ask him? I desperately want to get back to health. I am 47 & have always been healthy and exercised daily until this.

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I am having the same exact problems you Are and have been to several vascular surgeons and GIs. You need to send your records to Dr. Hsu in Connecticut enjoying the MALS PALS Facebook page to learn more.

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Hello,
I have just been informed that I am getting the robotic assisted laparoscopic Mals surgery… Does anyone have any experience with this? And could supply me with some information?

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@chicken

Hello,
I have just been informed that I am getting the robotic assisted laparoscopic Mals surgery… Does anyone have any experience with this? And could supply me with some information?

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Whoa! Who is doing that? Do you have an artery compression or is it the ganglion nerves? I have never heard of anybody having robotic surgery for that and I am on the MALS PALS Facebook page that is extremely informative. They’re only a few doctors in the entire country that are capable of doing the surgery without having to have another surgery performed by a different doctor to fix but the first one screwed up. I would do a heck of a lot of homework before I loud somebody to do that surgery especially robotic and laparoscopic. If you’re not already on the mals pal’s Facebook page you need to get on it. Now only read what everybody has to say but they have a lot of documentation and list of doctors who are preferred surgeons for this particular surgery. We are finding out from a lot of people that laparoscopic ends up going to an open surgery later down the road. Which then causes more problems.

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I have severe aretery compression, but the surgeon said that he will cut not only the ligament away but also seperate all the nerves…. Is that the ganglion nerves? I have been followed by cincinnati childrens, so I'm getting the surgery done by someone there… According to him, he's done a bunch of these such cases with an 80% sucess rate, and has never need to resort to open during the surgery… The 20% he says had a different diagnosis which was causing their symptoms so the surgery didnt help..

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@sclindajanssen

With all due respect, That is a horrible article because it says there are many psychiatric diagnoses among people with MALS. It should have said “psychiatric MISdiagnoses” because most of us with MALS have had some physicians use a psychiatric diagnosis as a wild card when they don’t know to check for MALS. This article will only serve as another barrier to getting the right tests and treatment. The majority of us have been misdiagnosed; the article didn’t even check to see if those psychiatric comorbiditues were errors.

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Well said

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@sclindajanssen

With all due respect, That is a horrible article because it says there are many psychiatric diagnoses among people with MALS. It should have said “psychiatric MISdiagnoses” because most of us with MALS have had some physicians use a psychiatric diagnosis as a wild card when they don’t know to check for MALS. This article will only serve as another barrier to getting the right tests and treatment. The majority of us have been misdiagnosed; the article didn’t even check to see if those psychiatric comorbiditues were errors.

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You are correct about comorbidities and one of them is fibromyalgia which is still miss understood by most of the medical community including Mayo Clinic who tried to say that I had Munchhausen‘s! I finally went to other doctors that were local and they found diagnoses that Mayo Clinic never even thought of even though I gave him every medical record every symptom every surgery every allergy everything. I ended up canceling the rest of my appointments there because they Cut and wrap their head around the idea that fibromyalgia is real although they have a fibromyalgia clinic and want you to go through a three week pain management class the cost $42,000. People I’ve been dealing with fibromyalgia for 25 years I don’t need a $42,000 damn class or to be told that I have Munchhausen‘s. Since I quit seeing them I’ve been diagnosed with four different rare diseases including MALS.

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@jayson

So by having a high grade stenosis of the Celiac Artery, what would be the next steps after the full GI work up?

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Depending on the suspected cause, for MALS it is a diagnosis of last resort, so a comprehensive GI work up is needed. There are other diagnosis that can cause symptoms. I think this is a great resource:https://rarediseases.org/rare-diseases/median-arcuate-ligament-syndrome/

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