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?

@jayhawk57

Thank you Kari! I'm having issues and coming to Mayo finally. I visited with you a few years back when I was I. Kansas City.. You were very supportive and appreciate all you do to be a voice for us. I since had Mals surgery 2013 and having issues again. I also have FMD in C4 -C5. And lost left Kidney as well.I have a hernia where they did surgery but can't get anyone to help me. Have a great trip!
Linda Allen 🙂

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LINDA!!!! I miss you! I am so happy to see you here. Will you be going to Mayo Rochester by chance? I remember your experience vividly, I have thought of you often through the years. Sending you gentle hugs!!

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@ukmalsman

Hi @kariulrich
Although the article seems to champion surgery for MALs sufferers the fact that it couples psychiatric comorbidities with MALs sends out the wrong impression. With such a low amount of people in the study group percentages become skewed giving rise to conclusions that are somewhat biased. A larger study group would have been ideal. We all know how much specialist love to drop percentages as evidence to justify what they are saying. A greater concern is there is no mention of a control group in the study. This would tell us if psychiatric comorbidities are a factor in the end result and quality of life of participants.

I’m not sure if you had a look at the evaluating factors for the psychiatric comorbidities; Beck’s Anxiety Inventory, Beck’s Depression Inventory and the Eating Disorder Examination Questionaire. These indexes are suitable for workplace and everyday environments, they are hardly suitable for a MALs sufferer. Many of the questions we would score high because of the condition not because how we feel.

As you mentioned many MALs sufferers may have suffered from situational anxiety and depression; a subject I brought up a while a go. Doctors need to understand that every sufferer is different and may suffer at some point to some degree a state of anxiety or depression; I agree we need to be in the right frame of mind preoperatively in order to achieve greater success in the degree of quality of life postoperatively.

The length of time and degree of painfulness the person has suffered may well determine the frame of mind that person is in. I look at MALs sufferers as long term torture victims. First and foremost we are not in control, We don’t always know when it will hit, we don’t know just how much pain will be inflicted and we never know for how long it will last; all the hallmarks of being repeatedly tortured. All this and yet most of us still smile and generally hide our painful nature.

We are so widely connected around the world a better more comprehensive study could be devised. I really think we deserve more than a 100 person study!

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I agree with the points you made, especially that we deserve more than a 100 person study. Let's see if we can make that happen!!

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@kariulrich

LINDA!!!! I miss you! I am so happy to see you here. Will you be going to Mayo Rochester by chance? I remember your experience vividly, I have thought of you often through the years. Sending you gentle hugs!!

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Kari,

Thanks so much for your reply. I hope all is well with you and family. Yes, I'm in the planning stages now. I'm getting FMLA at work. I'm having so many issues with my stomach since my MALS surgery, and no doctors want to do anything. I now have a hernia as well. I'm miserable. I was glad to find you on this site. I will give you more details when I know more regarding my visit to Mayo. Have a blessed evening. 🙂

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@bl3ss3d @sclindajanssen
I worked for a hospital and normally I could find the CPT code if I needed it. After I posted my reply yesterday, I thought I’d do some research and make a few calls to see if I could get it. Nope. Just to clarify to anyone else besides me who didn’t know, the ICD-10 gives the diagnosis code and CPT is the billing code – an important distinction that I was confused on. @sclindajanssen – Thank you for the link on CPT codes. It was very helpful! Best wishes and prayers to all my fellow MALS sufferers!

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Hello everyone..was just recently told I have MALS and would need surgery. My pcp admits she doesn't know much about this condition but is doing the research and trying to find the right surgeon for me. The first two were general surgeons and they didn't want to touch me do to my previous surgery and my complicated antamony. I have heterotaxy syndrome with polysplenia…basically I have a lot of things not in the right places. I have suffered for several years with severe pain with eating nausea diarrhea/ constipation..I've lost two jobs..and I just want to have my life back. I stood up and asked my PCP to send me to the Mayo clinic or Dr Hsu in Connecticut since we found out there are no good vascular surgeons in Missouri. Does anyone know how long it takes to get an appointment with the Mayo clinic. My Dr sent my referral off on April 1st two days later I got a Mayo clinic patient number but still no appointment. Just wondering if I should have my Dr refer me to Dr Hsu too?

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@kjmo73

Hello everyone..was just recently told I have MALS and would need surgery. My pcp admits she doesn't know much about this condition but is doing the research and trying to find the right surgeon for me. The first two were general surgeons and they didn't want to touch me do to my previous surgery and my complicated antamony. I have heterotaxy syndrome with polysplenia…basically I have a lot of things not in the right places. I have suffered for several years with severe pain with eating nausea diarrhea/ constipation..I've lost two jobs..and I just want to have my life back. I stood up and asked my PCP to send me to the Mayo clinic or Dr Hsu in Connecticut since we found out there are no good vascular surgeons in Missouri. Does anyone know how long it takes to get an appointment with the Mayo clinic. My Dr sent my referral off on April 1st two days later I got a Mayo clinic patient number but still no appointment. Just wondering if I should have my Dr refer me to Dr Hsu too?

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@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.

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Hi 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

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I've been told I may have mals but have know clue where to go

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@vpauley

I've been told I may have mals but have know clue where to go

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Hi @vpauley here is a resource for you. Hope this helps! https://www.malsfoundation.org

Liked by koryn

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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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@kariulrich

Hi 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

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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.

Liked by red1955

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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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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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