Median Arcuate Ligament Syndrome (MALS)

I was diagnosed with MALS in February this year and underwent surgery to release the ligament in March. I felt somewhat better after surgery and was able to finally eat without vomiting every time I ate. I started gaining back the 38 lbs I had lost in four months. My symptoms never fully went away and the abdominal pain has continued to escalate again. I now have started losing weight again due to severe pain every time I eat and vomiting again. My GI dr started me on IBS meds but they have not helped anything. My PCP believes the problem still remains with my celiac artery and is revisiting surgical options. Although surgery is never fun, I hope they go back in and fix me up so I can feel human again and enjoy my life.

@cberry Welcome to Mayo Clinic Connect! I am so glad you posted. I am so sorry to hear that your pain has returned, I know how difficult it is to admit that the symptoms have returned, or never truly went away. May I ask what kind of surgery you had? Open vs Lap? Surgery is not fun, and something none of us MALS take lightly, however when your quality of life deteriorates so drastically it becomes an option that we have to consider. The risk vs benefit is something we each struggle with. I am sorry you are going through this, I was fortunate that I never had the severe vomiting some people have. I have nausea, postprandial pain, weight loss, bowel issues all of those symptoms take their toll, add vomiting and I think I would go over the edge. Thank you for being brave and sharing your experience, there are several of us here and I hope you can find some comfort knowing you are not alone.

I went to a general surgeon and he decided to do the surgery robotically, he had never done the surgery before. He released the ligament and did the ganglionechtomy. I truly believe there is still an issue with my celiac artery being compressed however, living in a smaller city the surgeons here don't want to step on each other's toes and make one another feel bad by second guesssing someone's work and getting someone to go back in to look at it again is becoming a challenge. I have been in and out of the ER numerous times for the pain, including last night. It is to the point where even fentenyl isn't working for the constant pain. I am desperate for someone to help but I don't know where to turn. All of my labs always come back fine. No one has done a repeat Ct Angio or an ultrasound to see if the artery is still compressed. I worry about scar tissue being an issue as well considering that wouldn't show up on imaging. Would scar tissue cause pain? Any help would be appreciated. Thanks.

@cberry I am guessing that with robotic surgery they were not able to do a intraoperative ultrasound to check velocities after the ligament was clipped. The problem with that is that if the artery is deformed from the ligament it could still be causing stenosis. One thing to consider is having a cath angiogram and have them measure arterial pressures. You need a second opinion with a vascular surgeon who has experience with MALS. This breaks my heart! Scar tissue does not show up on imaging, but can contribute to problems. I am more concerned about the velocities of your celiac artery. Do you mind me asking what state you are in?

Hi @cberry, sorry to hear you are having problems. I agree like Kari, you need a second opinion. I had an open surgery for both celiac and sma arteries. It was a big one. This was the beginning of Feb. 2014. July 2014, they noticed it narrowing again. I thought that was pretty quick. You never know you need to get a angio. I eventually got 2 stents put in and there was a lot of scar tissue. I can't bend to my left without it feeling like theres a brick or something preventing me from moving anymore : scar tissue. I again just had angio done to see how much of a blockage/stenosis there really was since the ct wasn't clear enough. Good thing, my surgeon had to balloon the celiac while in there. I do have relief of pain after eating, but still all bowel issues.
You just don't know and you need to get someone experienced. I hope that helps you understand believe in what your body tells you. Good luck

I am in Kansas, my surgery was done at Salina Regional. Im not happy with the doctors here and desperately want someone to listen to me. I havr four kids and I am miserable everyday. I just want to feel better.

@cberry There is a group on facebook called MALS PALS, they are terrific, my friend Robin is a moderator their. They keep a list of doctors that patients have seen for MALS. This was listed for Kansas: Dr. Lowry (works with GI – Dr. Molaos) Shawnee, Kansas. I have not heard of either of them personally, but that maybe a start? For me what has helped for the pain is to take tramadol before meals, however it considered addictive and doctors are reluctant to prescribe it.

Thank you I joined that group as well. Thank you for that info, I'll look up that doctor and do some research.

I am relieved to have stumbled upon this connect site! I had laproscopic surgery 10 days ago to release the ligament and remove scar tissue from compressing the celiac artery. They also had to release pressure by cutting into my diaphragm. I am discouraged as the burning pain under my right side has returned since I stopped the post surgical pain meds. I go back this next week for an ultrasound to see if the Stent needs to be inserted. Knowing how common it is to feel nauseous still and have zero appetite, even pain with eating, makes me feel better. Kari,I'm so sorry that you're still dealing with all of this. Have you spoken with anyone who has had complete recovery from this syndrome?

@blessedgma Happy to have you here! I have heard of several people who have complete relief of MALS after laparoscopic and open surgery, so there is hope! I believe more people are relieved from symptoms than have a recurrence, however we do not hear back from them. I am wondering if your artery is still kinked from being compressed for so long, it will be interesting to hear what your velocities are on inspiration vs expiration! Did you have the option to have laparoscopic vs open? Just curious if a vascular surgeon or a general surgeon did your surgery.