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?

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.

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@cberry

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.

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@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.

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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.

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@cberry

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.

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@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?

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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

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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.

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@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.

Liked by blessedgma

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

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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?

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@blessedgma

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?

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@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.

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@blessedgma

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?

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Thank you so much for your reply!
I was not given a choice of laproscopic vs open. The surgery was completed by a general surgeon with a vascular surgeon in the room. I will see the vascular surgeon on Wednesday as well.
What you said makes sense about possibly having a kink still, and hopefully fixing that will bring relief.
Reading a lot of the entries here, have been so helpful and encouraging, just not feeling alone.

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Looking for some input. I have had severe diarrhea for several years becoming worse over the past year. Started strictly as diarrhea but then turned into stomach pain, nausea, fatigue, as well as the diarrhea. My symptoms vary and recently I have been worked up for MALS. I’m the past I have had colonoscopy/endoscopy with biopsies, ruled out chrons, colitis, microcolitis, diverticulitis, etc. I have tried medications such as dicyclomine, Imodium, colestipol, protonix, amitryptiline, and lexapro (sorry if the spelling is incorrect). I also had my gall bladder out in March of this year for the liver pain and nausea without relief. I have tried diet modification and my pain/diarrhea worsens with exercise.
On a normal basis I have pain under my ribs on the right side (like liver pain) and down the right side of my stomach. I have had a few bouts where the pain has been severe and I was unable to eat. The last bout losing 9-10 lbs. I have in the last two months had two weeks of feeling almost normal with normal stool and no pain with eating. This is always short lived and the symptoms return. I had an ultrasound which showed stenosis of the celiac artery and just had a CT angio which showed mild celiac artery stenosis with a hooked shaped appearance of the celiac artery. I am awaiting speaking with the physician from here but want to know if anyone else has similar issues. Can I have the back and forth with my symptoms if it is MALS? And has anyone else had issues with severe diarrhea (6-10 Times a day). This is taking over my life and I am beyond frustrated.

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@lexie9409

Looking for some input. I have had severe diarrhea for several years becoming worse over the past year. Started strictly as diarrhea but then turned into stomach pain, nausea, fatigue, as well as the diarrhea. My symptoms vary and recently I have been worked up for MALS. I’m the past I have had colonoscopy/endoscopy with biopsies, ruled out chrons, colitis, microcolitis, diverticulitis, etc. I have tried medications such as dicyclomine, Imodium, colestipol, protonix, amitryptiline, and lexapro (sorry if the spelling is incorrect). I also had my gall bladder out in March of this year for the liver pain and nausea without relief. I have tried diet modification and my pain/diarrhea worsens with exercise.
On a normal basis I have pain under my ribs on the right side (like liver pain) and down the right side of my stomach. I have had a few bouts where the pain has been severe and I was unable to eat. The last bout losing 9-10 lbs. I have in the last two months had two weeks of feeling almost normal with normal stool and no pain with eating. This is always short lived and the symptoms return. I had an ultrasound which showed stenosis of the celiac artery and just had a CT angio which showed mild celiac artery stenosis with a hooked shaped appearance of the celiac artery. I am awaiting speaking with the physician from here but want to know if anyone else has similar issues. Can I have the back and forth with my symptoms if it is MALS? And has anyone else had issues with severe diarrhea (6-10 Times a day). This is taking over my life and I am beyond frustrated.

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I should mention that the pain can be present prior to eating but becomes much worse after eating. Many times causing me to avoid eating, at least until night time when I am home from work and can suffer in the privacy of my home

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@lexie9409

Looking for some input. I have had severe diarrhea for several years becoming worse over the past year. Started strictly as diarrhea but then turned into stomach pain, nausea, fatigue, as well as the diarrhea. My symptoms vary and recently I have been worked up for MALS. I’m the past I have had colonoscopy/endoscopy with biopsies, ruled out chrons, colitis, microcolitis, diverticulitis, etc. I have tried medications such as dicyclomine, Imodium, colestipol, protonix, amitryptiline, and lexapro (sorry if the spelling is incorrect). I also had my gall bladder out in March of this year for the liver pain and nausea without relief. I have tried diet modification and my pain/diarrhea worsens with exercise.
On a normal basis I have pain under my ribs on the right side (like liver pain) and down the right side of my stomach. I have had a few bouts where the pain has been severe and I was unable to eat. The last bout losing 9-10 lbs. I have in the last two months had two weeks of feeling almost normal with normal stool and no pain with eating. This is always short lived and the symptoms return. I had an ultrasound which showed stenosis of the celiac artery and just had a CT angio which showed mild celiac artery stenosis with a hooked shaped appearance of the celiac artery. I am awaiting speaking with the physician from here but want to know if anyone else has similar issues. Can I have the back and forth with my symptoms if it is MALS? And has anyone else had issues with severe diarrhea (6-10 Times a day). This is taking over my life and I am beyond frustrated.

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I was diagnosed with MALS in February of this year and underwent surgery in March, i still have persistent diarrhea anywhere from 5 to upwards of 17 times a day. I understand your pain. I have tried everything medication wise too. It is utterly exhausting. The surgery initially helped my vomittng, but after a few months my symptoms came back way worse than before. Im waiting to see if my artery have become compressed again and what we will do after that. I would highly suggest you get a surgeon that knows what theyre doing and has experience with MALS.

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@lexie9409

Looking for some input. I have had severe diarrhea for several years becoming worse over the past year. Started strictly as diarrhea but then turned into stomach pain, nausea, fatigue, as well as the diarrhea. My symptoms vary and recently I have been worked up for MALS. I’m the past I have had colonoscopy/endoscopy with biopsies, ruled out chrons, colitis, microcolitis, diverticulitis, etc. I have tried medications such as dicyclomine, Imodium, colestipol, protonix, amitryptiline, and lexapro (sorry if the spelling is incorrect). I also had my gall bladder out in March of this year for the liver pain and nausea without relief. I have tried diet modification and my pain/diarrhea worsens with exercise.
On a normal basis I have pain under my ribs on the right side (like liver pain) and down the right side of my stomach. I have had a few bouts where the pain has been severe and I was unable to eat. The last bout losing 9-10 lbs. I have in the last two months had two weeks of feeling almost normal with normal stool and no pain with eating. This is always short lived and the symptoms return. I had an ultrasound which showed stenosis of the celiac artery and just had a CT angio which showed mild celiac artery stenosis with a hooked shaped appearance of the celiac artery. I am awaiting speaking with the physician from here but want to know if anyone else has similar issues. Can I have the back and forth with my symptoms if it is MALS? And has anyone else had issues with severe diarrhea (6-10 Times a day). This is taking over my life and I am beyond frustrated.

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Also, if you have facebook, there is a page called MALSPALS, theyre very helpful.

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