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?

Hi all, does anyone know if BCBS insurance covers MALS surgery? When I called them they stated I needed to know the providers name and CPT code in order to get coverage information. I talked to my physician and he did not give me either since he is not certain I will need surgery. He only stated that I would be sent to California if it is necessary. Meantime, my husband and I have post poned buying a home and pregnancy due to not knowing what this possible surgery could cost us. We’d really like to be able to plan around this and move forward. Thanks in advance for any advice you can offer.

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I have not had my lap surgery for MALS yet. I have to travel by airplane soon and sitting is very painful for me. Has anyone found a specific pillow or technique that helps during long flights?

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@bl3ss3d

Hi all, does anyone know if BCBS insurance covers MALS surgery? When I called them they stated I needed to know the providers name and CPT code in order to get coverage information. I talked to my physician and he did not give me either since he is not certain I will need surgery. He only stated that I would be sent to California if it is necessary. Meantime, my husband and I have post poned buying a home and pregnancy due to not knowing what this possible surgery could cost us. We’d really like to be able to plan around this and move forward. Thanks in advance for any advice you can offer.

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It’s silly that your doctor won’t give you the CPT code just because he’s not sure you have MALS. These codes are not top secret information! There are other ways to get them. Try your local hospital medical records department and ask to speak with someone familiar with coding. The manager of this department should surely know the code or codes. A general surgeon’s office should also be able to provide this information.

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@marideth401

It’s silly that your doctor won’t give you the CPT code just because he’s not sure you have MALS. These codes are not top secret information! There are other ways to get them. Try your local hospital medical records department and ask to speak with someone familiar with coding. The manager of this department should surely know the code or codes. A general surgeon’s office should also be able to provide this information.

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Good idea. I’m going to try both. 😊

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@marideth401

It’s silly that your doctor won’t give you the CPT code just because he’s not sure you have MALS. These codes are not top secret information! There are other ways to get them. Try your local hospital medical records department and ask to speak with someone familiar with coding. The manager of this department should surely know the code or codes. A general surgeon’s office should also be able to provide this information.

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@tutorgrl

I have not had my lap surgery for MALS yet. I have to travel by airplane soon and sitting is very painful for me. Has anyone found a specific pillow or technique that helps during long flights?

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I used a small travel pillow 🙂

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@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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