1. < Digestive Health

Median Arcuate Ligament Syndrome (MALS)

Posted by Kari Ulrich, Alumna Mentor @kariulrich, Dec 26, 2016

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?

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Kari Ulrich, Alumna Mentor | @kariulrich | Jan 17, 2019
In reply to @jayson "Hello everyone. I’m trying to get some answers. I was admitted to the hospital for having..." + (show)
@jayson

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.

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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.

REPLY
2 replies
jayson | @jayson | Jan 18, 2019
In reply to @kariulrich "Hi @jayson so happy you found us, welcome to Mayo Clinic Connect! First, deep breath. I..." + (show)
@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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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.

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bl3ss3d | @bl3ss3d | Jan 21, 2019
In reply to @kariulrich "@lmtuska, Nice to meet you! I have had 2 MALS surgeries done at Mayo, and would..." + (show)
@kariulrich

@lmtuska, Nice to meet you! I have had 2 MALS surgeries done at Mayo, and would be happy to share any information that would be helpful. Mals in the pediatric population may be a bit different than the adult population. My experience is a bit different as I have an underlying vascular disease. There are two approaches to MALS surgery, laparoscopic and open. I would recommend asking about the pros and cons of both. It sounds like you have opted for the open approach. The open surgery is a long recovery time, for me it was at least a year. This is a small list of things that helped me:

Open MALS Helpful Hints

• No perfume, lotion, hairspray, fabric softener (Smells really bothered me after surgery)

• Needs: 1 size larger underwear and socks, slip on shoes
Loose fitting comfy yoga pants
Undershirt soft to protect clothes from rubbing against the incision

• Several travel size pillows

• Wash everything in dreft before using (My skin was sensitive)

• Unscented lotion for back rubs

• Ice pack help for back pain

• Electronic chair (If you can afford purchasing one, I highly recommend it) Great for sleeping in the first few months or more.

• Foods malt o meal good, pudding, white toast, popsicle, anything easy to digest

• Mask and headphones or ear plugs

• Something from home, small, a stuffed animal anything to keep with you

• Eat slow, very slow If you think you are eating slow eat even slower. Advance diet slowly, VERY SMALL PORTIONS. Use your iPhone during dinner to keep you entertained, yes you should be eating that slow. Eat 1/2 of what you think you can eat. After surgery, there is no longer post prandial pain and your body is malnourished so it is easy to over eat and the fact you want to eat is an amazing feeling in itself. 

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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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2 replies
chicken | @chicken | Jan 21, 2019
In reply to @bl3ss3d "Hi @kariulrich, I was just diagnosed with MALS and I am currently being tested to see..." + (show)
@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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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?

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Kari Ulrich, Alumna Mentor | @kariulrich | Jan 21, 2019

@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?

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chicken | @chicken | Jan 21, 2019

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

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sclindajanssen | @sclindajanssen | Jan 21, 2019
In reply to @kariulrich "Came across a good article today, thought I would share: https://www.jvascsurg.org/article/S0741-5214(18)30278-7/fulltext" + (show)
@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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3 replies
Kari Ulrich, Alumna Mentor | @kariulrich | Jan 21, 2019

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.

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1 reply
Kari Ulrich, Alumna Mentor | @kariulrich | Jan 21, 2019
In reply to @bl3ss3d "Hi @kariulrich, I was just diagnosed with MALS and I am currently being tested to see..." + (show)
@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.

Jump to this post

@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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