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?

@ukmalsman

Hi @kariulrich

It’s been a long time since I have been on here due to poor health. December was the last time I was able to log in so I have a lot to catch up on. I was wondering if you have heard anything from @racheldmark, how is her uncle @ruudolpho has he made any improvements since December?

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@ukmalsman thank you for posting, I have not. I hope they see your tags and feel up to giving us an update! What is going on with you?? I am so sorry to hear your health has been struggling!!

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@chicken

Does anyone find that they crave salt and absolutely NEED it? I'm wondering if this is a symptom MALS patients have, or if it's just me:)

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I have POTS, so I find myself craving salt often!

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Just to keep everyone up to date: Mayo Clinic Rochester just sent me consent for MALS research in the mail. I believe it is for patients that have had surgery at Mayo. It had many quality of life questions about pre and post surgery, in addition to symptoms. I hope this gives you all hope like it did for me. The more research the better. I will keep you updated if I hear anything. Also, I will be going to a conference in Dallas, Texas this week called Healthevoices to learn how to better advocate for all of us. I may not be on as much during that time Wed-Sun this week. Please know I will be thinking of you- Healing Hugs, Kari

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Thanks for the replies on sitting positions affecting the pain with MALS. When my symptoms started 15 months ago, I had severe pain below my left ribs near the bra line. It’s very painful to put pressure on that area. This pain has continued. Has anyone else experience pain in the same area?

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@kariulrich

Just to keep everyone up to date: Mayo Clinic Rochester just sent me consent for MALS research in the mail. I believe it is for patients that have had surgery at Mayo. It had many quality of life questions about pre and post surgery, in addition to symptoms. I hope this gives you all hope like it did for me. The more research the better. I will keep you updated if I hear anything. Also, I will be going to a conference in Dallas, Texas this week called Healthevoices to learn how to better advocate for all of us. I may not be on as much during that time Wed-Sun this week. Please know I will be thinking of you- Healing Hugs, Kari

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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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Is it possible for mals to come back after surgery?

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@sclindajanssen

With all due respect, That is a horrible article because it says there are many psychiatric diagnoses among people with MALS. It should have said “psychiatric MISdiagnoses” because most of us with MALS have had some physicians use a psychiatric diagnosis as a wild card when they don’t know to check for MALS. This article will only serve as another barrier to getting the right tests and treatment. The majority of us have been misdiagnosed; the article didn’t even check to see if those psychiatric comorbiditues were errors.

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I agree @sclindajanssen there is a concern that the study couples psychiatric problems with MALs diagnosis, doctors could be misinterpreting the study as further evidence that a lot of it is in the mind of the patient. At worst delay treatment in favour of psychiatric evaluation and therapy. As a whole the article does support the use of surgery to improve quality of life for a MALs sufferer. The psychiatric tendencies they referred to seem to be about substance and alcohol abuse rather than mental health issues. There are a few concerns which I address in a reply to @kariulrich

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@kariulrich

I understand your concerns with the article but I believe it is a relavent and necessary topic. You may have misunderstood the conclusions are that patients that have undergone surgical intervention have improved quality of life. I believe many MALS patients experience situational anxiety and depression, I definitely have. That does impact the success of a surgery…any surgery not just MALS. Also many come into surgery already on pain medication and that also impacts the outcomes of surgical success according to the research available. I believe this article is supportive of the MALS patient as a whole, and address issues that a relavent to all of us.

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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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@tutorgrl My pain/discomfort is exacerbated by wearing a bra. I work in a professional setting and going bra less is not an option. However, at home I rarely wear one unless we are entertaining.

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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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