Median Arcuate Ligament Syndrome (MALS)

@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/

Oh sorry to hear that Debbie! It really depends on the team of doctors you see and how your personality blends with the physicians... I have gone through several doctors at Mayo, and it took me awhile to find a team that works with me and my needs. It is frustrating when you have a complex diagnosis and you have to jump through hoops to see the physicians you need, even then sometimes the gatekeepers don't allow patients to see the doctors they are requesting to see. I find that the most frustrating problem! Hopefully that problem can come to light at Mayo and they will become more willing to listen to the needs of the patients in seeing who they request to see, especially when it is a rare disease... the patient most often times knows more than the gatekeepers and it is difficult to see the experts in the field. Another problem is that the gatekeepers do not always realize that their colleagues in another department are the experts. Hope this makes sense to you.

I would focus on getting your nutritional status up prior to surgery, it is very difficult to get weight up prior to surgery. If you can eat a protein with a carb, a vegetable with a carb, a fruit with a carb. If you can supplement with boost or another nutritional drink do so. Surgery takes a lot of you and you will not be able to eat normally immediately after the surgery. I does take time for your body to get use to eating again. A multivitamin if you can tolerate one is not a bad idea, all my supplements are in Gummy form as I seemed to tolerate those best. When is your surgery scheduled and what type of surgery will you be having done? Have some more advice as you go through this process 😀 however I don't want to overwhelm you with information.

I was diagnosed with MALS and the doctors suggested surgery. I’ve lost quite amount of weight, and I am about 103 pounds now. Do I need to gain weight to prepare for surgery? If so, how much.