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Median Arcuate Ligament Syndrome (MALS)
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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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!
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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2 ReactionsGood 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!
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!
@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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1 ReactionI 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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1 ReactionHi @vpauley here is a resource for you. Hope this helps! https://www.malsfoundation.org
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1 ReactionI've been told I may have mals but have know clue where to go
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1 ReactionHi everyone, back in class again! Wanted to let everyone know there is now a formal non-profit dedicated to MALS! Full disclaimer, I am on the Board of Directors. Anyways, if you are interested, take a peek: https://www.malsfoundation.org
@kjmo73 - I understand your suffering!
Mayo sounds good- you have been entered in their system. Since you have an unusual anatomy, you’ll probably find the best surgeon there. They can coordinate evaluations by vascular and GI surgeons and the testing needed.