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?
Interested in more discussions like this? Go to the Digestive Health Support Group.
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.
I was getting a ct scan to look for Chrons and it showed up....
Came across a good article today, thought I would share: https://www.jvascsurg.org/article/S0741-5214(18)30278-7/fulltext
@chicken I was diagnosed with Fibromuscular Dysplasia prior to MALS. I have not heard that it connected with any other diagnosis at this time, so little research has been done. There is a list of differential diagnosis that must be ruled out before MALS is diagnosed...do you think maybe that is what he meant? How are you doing? How was your MALS discovered?
Hello,
I have recently been diagnosed with MALS, and my doctor mentioned that many times it comes along with another diagnosis. Does anyone have any experience with this? Or just have MALS without another diagnosis?
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.
Thanks so much for responding. I’ve copied my vascular doctors plan going forward. Please let me know what you think. I’m going Wednesday for a PPD test of the gallbladder. After that a colonoscopy.
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.
Hello everyone. I’m trying to get some answers. I was admitted to the hospital for having a blood clot in my left leg. The clot dissolved and I was good to go. Through that stay in the hospital I through several test along with 2 CT scans with contrast and a MRI. The Dr. that was taking care of me noticed on one of my CT scans that it showed I have a high-grade stenosis of the celiac axis orgion, with arcuate ligament compression syndrome. I was directed to see a vascular surgeon after seeing the CT scan. The vascular surgeon said my symptoms were vague but he did see that I have the stenosis of the celiac artery but he wanted me to go to a GI doctor. So I’ve had an upper GI,blood work, Ultrasound and all have come back negative. Blood work came back normal. Furthermore, when I had my Ultrasound the doctor stated that my CT scan was very impressive, that she could see that it was narrowed. However, since the GI doctor only wanted to know about my gallbladder, pancreas, liver, and spleen which all came back negative. There was no nothing on the report of the level of flow going through the celiac artery, but the doctor said the flow was high. Now my GI doctor wants me to do a test to see if my gallbladder is functioning properly if that comes up negative he wants me to do a colonoscopy. If that comes out negative he wants me to see a general surgeon to remove my gallbladder. Weird everything comes up negative, so let’s just take the gallbladder out lol. With all this I feel that I’m going down a rabbit hole. My symptoms have become worse, I don’t eat much, I’ve started to lose weight and my stomach hurts whenever I eat anything. My vascular surgeon said that MALS comes down to excluding everything then they can say it’s MALS. So with all that being said what should I do? I feel that no one is listening or the doctors think this is made up. I feel that my GI doctor is trying to say my symptoms are gallbladder but everything has come out negative. And knowing that I have the high grade stenosis of the celiac artery but they’re ignoring it. Please any help would be greatly appreciated. Thanks.
I am very excited to announce that the National Organization for Rare Disorders- NORD has just recognized MALS! Thank you to Dr. Skelly et al! https://rarediseases.org/rare-diseases/median-arcuate-ligament-syndrome/