Median Arcuate Ligament Syndrome (MALS)

I have a few questions about symptoms & surgery,My primary doctor ordered a CT scan because I had a chronic cough they couldn’t figure it out.Radiology found the crossed ligament by accident.Primary sent me to a vascular surgeon and he sent me to a surgeon to be evaluated.During that appointment,the Dr asked me several questions about symptoms.He asked me about tummy trouble,I told him sometimes I get constipated for several days then get nervous and take laxatives to help.When I do eat,my stomach kinda bloats & I get a sharp pain under my diaphragm that last a few hours(but I’m not doubling over screaming in pain).Because I’ve lost weight,about 10 pounds this year) He asked about me eating. I told him that I eat very little &sometimes avoid it cuz I know my stomach‘s going to get bloated. Based on my symptoms & the CT he thought I had MALS but wanted to do more tests.He ordered an US Abdomen Limited & a VL visceral/ mesenteric test.He called 2 days ago to tell me the results.It reflected the blood flow percentage in that area was lower so they suspect compression is altering it.He wants me to come back in to discuss options and surgery.I’m devastated & scared when they mention surgery. Especially when I hear of the long recovery time.My questions; what if my symptoms are caused by something else?I have chronic migraines so maybe I am losing weight because it’s difficult to eat when I have them.What if I’m getting constipated because of the migraine medication,what if my stomachs gets bloated because I’m having a big meal or it’s fatty.Could I have MALS with the only symptom is a lower blood flow in that area? Are you born with MALS or is it developed over time?Help!

I do not blame you for wanting to avoid the surgery. That would be my priority. From my own experience, Before the surgery I was eating enough most days to maintain my weight (that was not always the case as I mentioned in earlier posts). I could live with the smaller meals and not gaining the weight back but I decided on the surgery because I could not live with the other symptoms.

I took my time and sought several opinions which sounds like what you are doing. That was very helpful when I finally made the decision for surgery. The pain was very distracting at work and in life. Constantly thinking about what I could eat and how much to avoid any symptoms. Avoiding activity because what if the pain was bad or I would need to run to the restroom. I would have good days where I thought okay, maybe I can do this. Plus I read about people in worse shape than me. But my good days were few. I realized I really had no control. I always felt the best when my stomach and colon were completely empty. (Laxatives) 😊. But that’s not realistic long term. Looking back, most days I was just getting by.

I had no other problems like you do (migraines) so it was more cut and dry for me. Sounds like you are on the right track. Explore all your options and do not rush into anything. Glad they found it early for you.

I agree with annief. It comes down to how you manage the symptoms, quality of life. You also don’t have to make a decision now whether to have surgery or not. Sometimes it’s best not to rush into making a decision.
When I got my diagnosis, I had suffered for years with bouts of excruciating pain. In addition, I had chronic intestinal inflammation- unrelated. I was told the odds that surgery would help, but decided to go ahead if there was hope for improvement.
This is not a life and death decision- you can wait and see.

@kariulrich Not sure if I said this before in a post but some things have happened since...Finally getting my MALs diagnosis. I went to my GI because he preformed the last surgery I had. I was in so much pain I could barely talk. He asked me why and I was shocked to know he didnt have all my medical records since he is in the same group as my PCP. I explained to him the pain and the almost five years of tests and bloodwork and procedures and almost 2MM later still getting blood draws every three months. Had to quit my job. Having to sell my house. Cant take care of it anymore. My first symptom that has NEVER gone away is extreme distention of my abdomen.I posted before my photos. I can wake up with a flat belly and within an hour of moving around, look like Im ten mos pregnant with triplets. Its extremely uncomfortable and has cause back issues. This in addition to the 40lb weight loss from the MALs. Which getting back to the GI doctor.... looked at the few records he had and saw some blood tests in 2016 that came back abnormal on my liver and kidney. It seemed like not biggie to me because we did a repeat test and everything came back normal. So I and the Dr dismissed it. But not the GI doctor. So of course, the first thing he wanted to do was bloodwork. I told him the only way he was getting blood was if I could have a doppler ultrasound done also. So he agreed and I had the ultrasound the next day. The morning after the ultrasound, he called me. He said guess what. And i knew. I said.... I WAS RIGHT. he said yes you were. And scheduled me for a CTA. I asked about the bloodwork but he said he didnt have the results back yet. So i figured Id get the bloodwork and CTA results at the same time. A few days went by and no call from the doctor. So I called. Left a voice message. No response. THis went on for several days. I finally called and had my records sent to a vascular surgeon and she called me immediately to schedule a consultation re my surgical options. But the more I have dug and read, the more I see I need a cardio vascular surgeon if I want the surgery to work long term. I also have scar tissue from a tummy tuck that could be an issue and I want my surgeon to know what they are looking at. I want a MALS specialist surgeon and the first vascular surgeon i see tomorrow isnt. So i called Vanderbilt which is the only hospital in Nashville with a MALS specialist cardio vascular surgeon. I have an appointment with him to discuss also. I decided to keep the appt with the regular vascular surgeon just because I think I should at least hear two views. I want to know about the swelling in my belly that is just as debilitating for me as the pain. Im fine not eating to keep the pain at bay. but it doesnt matter if i eat or not, Im swollen ALL the time. Im bent over whenever I actually have the energy to get out of bed. I walk like a 90 year old osteoporidic woman. It's painful and I may as well stay in the bed- so I do.Even trying to walk around........, take a shower (i cant lift my hands over my head so washing my hair is a nightmare and i have to do it in stages. bathe in HOT water..Take a nap. Soap on my head. sit down. Rub soap in. Sit down.. Wash soap out. Sit down. Once Im done, Im exhausted and go right back to bed) ............it doesnt get any better. What little food/drink I have in the house I have delivered. And you're right, white carbs work best for me. water crackers, rice, bread, plain pasta. Anything I cant smell .. cause then Id be nauseous. And that sucks too. Other things that have been disastrous to my life are ... depression, forgetfulness, balance issues which are prob related to not eating. Not eating, Memory loss has been a big deal. THat, constant exhaustion, pain, and swelling. And I just found out I have skin cancer. Which is like a hangnail compared to the MALs nightmare...... Anyway that's a part of my story. Which hopefully is changing course very soon thanks to you guys and MALs Pals on FB. That suggestion has been very helpful too. Thanks for listening.

if the symptoms are mild will surgery still be required, or can I just have it monitored?I MALS is left untreated,will it get worse with time or stay the same?I am confused because I don’t have the excruciating pain like I have been reading in the blogs.To me I think my symptoms have been mild.I do have some discomfort at times after eating.The pain is right under my diaphragm and lasts for a few hours.I thought it was just indiegestion. I eat very smalll meals but my weight stays the same or after a few weeks might drop a pound or two.

Thank you, Yes @lisa01 I am part of MALS PALS, but I do like the security of being here on Mayo connect vs Facebook when it comes to health information security. I was hoping that a group would start here for MALS. If we had enough patients here on Mayo Connect maybe they would consider doing a webinar in the future. I really like the format of this site. I have had Open Mals surgery twice, once for a bypass and then a revision several years later. If there is anyone interested in joining me here let me know.

Hello. I turned 50 in May.. over the past two and a half years or so I have seen 37 doctors and 19 surgeons. I have had over 1.5 MM dollars in tests and procedures performed to try to figure out why I have pain when I eat that radiates around to my back. My stomach also swells to the point that I can’t even stand up or walk. There are occasions when I stay laying in the bed for days at a time and cannot get up. The pain and the nausea are just too debilitating. When I’m starving and finally just have to eat something I will take a Linzess so the food immediately gets emptied back out of my system. I have tried every diet that there is. I have tried vegan, vegetarian, macrobiotic,… Paleo, if any of them, seems to have worked a little bit for me as far as being able to eat without as much pain. I have just stumbled upon this disease and have made a call to my gastroenterologist. I think it is important to recognize that so many times when tests are done, blood work is involved. Normally when blood work is involved, they ask you to fast. The problem with that is, the pain happens when you eat, not after you have fasted. Flareups seem to happen right when you eat so you really either need to be eating or have just eaten when a test is performed. I know it’s difficult, but there is an alter sound that can be performed right after you eat that shows this artery and what it’s doing. So it can be done…That’s what the doctors don’t seem to get. And I don’t understand why. Here’s a photo of my swelling. And what I look like when I don’t eat, or when there is no swelling..Actually normal. I will go from the normal photo to the others within minutes of eating. Or sometimes just drinking a bottle of water. I can at times literally watch my belly grow with each sip. And my doctor has seen it happen too. Obviously I can’t take a picture of my pain but let’s just say I had to retire from my job,at 49, because I couldn’t go to work on a daily basis, or with any regularity because of this situation. I currently cannot keep a job. I am in bed most of the time And when I get up I can only move around for a short time before I have to lay back down. I cannot do any kind of strenuous activity or even hardly any activity at all without the swelling & the pain. I used to run 10 miles a day and work out two hours a day. Now I can’t get out of the bed.
I have COBRA but it will run out in about a year. I’m hoping someone will find something soon.

Hi:
If you are looking for a Dr. that specializes in MALS then I would suggest Dr. C. Skelly at the University of Chicago, in Chicago. He is an expert in MALS.

@kariulrich I'm looking at open surgery and being told I'll feel "crummy" for a week. Should I take that to mean I'll be out of work for a whole week but able to return after that (desk job doing computer work)?