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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@red1955

I was diagnosed with MALS in 2016, at the age of 61 when my GI doctor ordered a CTA due to the exclusion of other gastrointestinal issues. In 2019 my symptoms grew significantly more problematic. They included chest pain,irregular heartbeat, breathlessness, dizziness, severe epigastric pain that was not necessarily postprandial, loss of appetite, nausea, diarrhea, significant gas and bloating and generally feeling uncomfortable. Another CTA was completed showing severe Celiac artery stenosis suggestive of MALS, Superior mesenteric artery stenosis, FMD of right renal artery and pelvic vascular congestion. A vascular surgeon performed an open laparotomy and lysis of the celiac fibrinous plexus. A CT was performed after surgery due to uncontrollable pain and was normal. Post-surgery I continue to experience significant epigastric pain, postprandial and otherwise, gas, bloating, and diarrhea for 3 1/2 weeks. The pain felt like someone was roughly performing the Heimlich maneuver on me. It also felt like my epigastric area was being pulled apart and often radiated down my right side to the mid back. After numerous trial's of gastric medicine, hydrocodone, and neurontin, I realized the pain was best controlled with Neurontin, indicating the pain is nerve-related. I have had several bouts of regional complex pain syndrome after brachial plexus release surgery and hand and foot fractures. I'm unsure if the pain is caused by residual nerve fibers post-surgery or a CRPS recurrence. My vascular surgeon has basically discharged me at 4 weeks post op, but offered a referral to a pain management doctor for a celiac plexus block. I am concerned with the FMD of the right renal artery and the underlying reason that I have both CACS and FMD. I wish I would have gone to the Mayo Clinic but I have Medicare and Blue Cross Blue Shield of Louisiana.

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@red1955 - Sorry to hear about the continued pain postop. I had my MALS surgery 2015 at MUSC in Charleston. I also had significant pain postop - well controlled with neurontin. It faded away after a few months. I was a patient at Mayo earlier. I had Medicare and a supplemental insurance. Mayo fills the insurance forms and then we forward the insurance payment to them. I have been lucky to have everything covered. You could still go to Mayo for your continued problems.

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@astaingegerdm

@red1955 - Sorry to hear about the continued pain postop. I had my MALS surgery 2015 at MUSC in Charleston. I also had significant pain postop - well controlled with neurontin. It faded away after a few months. I was a patient at Mayo earlier. I had Medicare and a supplemental insurance. Mayo fills the insurance forms and then we forward the insurance payment to them. I have been lucky to have everything covered. You could still go to Mayo for your continued problems.

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Thanks for the info! It's good to hear that the post-op pain will eventually subside. My doctor asked me what was up with all the nerve pain, like I was supposed to know. Also, he does not intend to complete any further tests. His only suggestion was the celiac plexus block which I would rather wait on to see if the pain resolves on its own. I think BCBS of LA, will only cover emergency out of state care. Again, thanks for your help!

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@jayhawk57

Good Morning,

I just got home from 6 day hospital stay. I'm having challenging issues as I also have FMD. I have not been feeling well for months. Had surgery in 2013 for MALS, getting worse. They found Intussuscetion and end result was it went away. Still having stomach pain, extended stomach with bloating , dumping when I eat and dehydration. I only have 1 kidney so this is not good. My labs are not all ok either. Lost 6 pounds in the hospital. They told me I did not have hernia but test results show I do. I have a bulge like a softball extending out in upper stomach. My blood sugar dropped to 53 the day I left. Its been hard because I have to get back to work Wed. I just want a better quality of life. Can anyone give me feedback when they say I'm a complicated case and send me home? Thanks so much!

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I had a doppler of my celiac artery last week from MALS surgery I had in 2013. The results showed Post Operative changes of patch angioplasty of the proximal celiac artery. It showed good blood flow as well. My other test all showed normal for stomach. I have been having issues for some time after I eat. They are very similar to what I had before surgery. Has anyone encountered this before? Any feedback would be appreciated. Thanks!

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@jayhawk57

Good Morning,

I just got home from 6 day hospital stay. I'm having challenging issues as I also have FMD. I have not been feeling well for months. Had surgery in 2013 for MALS, getting worse. They found Intussuscetion and end result was it went away. Still having stomach pain, extended stomach with bloating , dumping when I eat and dehydration. I only have 1 kidney so this is not good. My labs are not all ok either. Lost 6 pounds in the hospital. They told me I did not have hernia but test results show I do. I have a bulge like a softball extending out in upper stomach. My blood sugar dropped to 53 the day I left. Its been hard because I have to get back to work Wed. I just want a better quality of life. Can anyone give me feedback when they say I'm a complicated case and send me home? Thanks so much!

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Hi @jayhawk57, I combined your post with your previous discussion on the same topic. I see you also had a chance to meet some of the other members in the Media Arcuate Ligament Syndrome (MALS) discussion, https://connect.mayoclinic.org/discussion/median-arcuate-ligament-syndrome-mals/?pg=51#comment-293773, as well. @jayhawk57, even though your tests indicate that your stomach is normal, did your provider have any opinions or concerns with your stomach issues that are similar to prior to your surgery?

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Good Morning,

I just got home from 6 day hospital stay. I'm having challenging issues as I also have FMD. I have not been feeling well for months. Had surgery in 2013 for MALS, getting worse. They found Intussuscetion and end result was it went away. Still having stomach pain, extended stomach with bloating , dumping when I eat and dehydration. I only have 1 kidney so this is not good. My labs are not all ok either. Lost 6 pounds in the hospital. They told me I did not have hernia but test results show I do. I have a bulge like a softball extending out in upper stomach. My blood sugar dropped to 53 the day I left. Its been hard because I have to get back to work Wed. I just want a better quality of life. Can anyone give me feedback when they say I'm a complicated case and send me home? Thanks so much!

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Hi All. I was just diagnosed two weeks ago. I spent 8 days in the hospital and had so many tests but MALS was the suspected diagnosis from the initial CT scan in the ER. I’ve have these recurring episodes of gnawing burning pain with eating that make me avoid it every few months for the past few years, along with almost daily nausea and some other issues that most doctors just wrote off as nothing, an ulcer ( none ever showed up), lady problems... so finally having a diagnosis is nice but I’m still lost. I’ve been reading and reading and reading. I’m in Delaware and I want to find a specialist. I’m meeting with a gastro in 2 weeks and one of the 12 doctors on my hospital team next week. But this was all new to them as well. It’s nice to find this page ( I saw it on the foundation website.) Thanks for any o do and support.

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@jessicakristen

Hi All. I was just diagnosed two weeks ago. I spent 8 days in the hospital and had so many tests but MALS was the suspected diagnosis from the initial CT scan in the ER. I’ve have these recurring episodes of gnawing burning pain with eating that make me avoid it every few months for the past few years, along with almost daily nausea and some other issues that most doctors just wrote off as nothing, an ulcer ( none ever showed up), lady problems... so finally having a diagnosis is nice but I’m still lost. I’ve been reading and reading and reading. I’m in Delaware and I want to find a specialist. I’m meeting with a gastro in 2 weeks and one of the 12 doctors on my hospital team next week. But this was all new to them as well. It’s nice to find this page ( I saw it on the foundation website.) Thanks for any o do and support.

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Welcome Jessica! Good to have you here! Sounds like you have had a long road to diagnoses! The pain can be so frustrating, especially after eating and exercise! For me that continues to be a problem, although surgery gave years of being mostly symptom free! Please ask any questions!

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@kariulrich

Welcome Jessica! Good to have you here! Sounds like you have had a long road to diagnoses! The pain can be so frustrating, especially after eating and exercise! For me that continues to be a problem, although surgery gave years of being mostly symptom free! Please ask any questions!

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Thank you for the warm welcome. I’m nervous but hopeful that I can manage this. I’ve been keeping a food and activity journal trying to figure out a best practice until I get some more answers. These conversations have been very helpful to read.

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Hang in there. The diagnosis has been made which can be the hardest part. Now it's getting prepared for surgery. Try to find a surgeon with good experience with MALS. There are those who believe in the Lap method which is less invasive but can present issues later on or there is the open method which allows them to do more with the procedure if needed. I myself had the open method as the ligament was literally wrapped around the artery numerous times. Both are viable options but will needs to be discussed. I did well but was long recovery. Have other conditions as well that have complicated things but now able to eat more volume. Again, hang in there...it does get better.

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@jmmb how are you doing? I have been thinking of you.

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