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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kjmo73 | @kjmo73 | Apr 27, 2019

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?

marideth401 | @marideth401 | Apr 24, 2019

In reply to @sclindajanssen "https://www.jvascsurg.org/article/S0741-5214(10)02209-3/pdf" + (show)

@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!

jayhawk57 | @jayhawk57 | Apr 24, 2019

In reply to @kariulrich "LINDA!!!! I miss you! I am so happy to see you here. Will you be going..." + (show)

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. 🙂

Kari Ulrich, Alumna Mentor | @kariulrich | Apr 24, 2019

In reply to @ukmalsman "Hi @kariulrich Although the article seems to champion surgery for MALs sufferers the fact that it..." + (show)

@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!!

Kari Ulrich, Alumna Mentor | @kariulrich | Apr 24, 2019

In reply to @jayhawk57 "Thank you Kari! I'm having issues and coming to Mayo finally. I visited with you a..." + (show)

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!!

Kari Ulrich, Alumna Mentor | @kariulrich | Apr 24, 2019

In reply to @tutorgrl "I have not had my lap surgery for MALS yet. I have to travel by airplane..." + (show)

I used a small travel pillow 🙂

sclindajanssen | @sclindajanssen | Apr 23, 2019

In reply to @marideth401 "It’s silly that your doctor won’t give you the CPT code just because he’s not sure..." + (show)

https://www.jvascsurg.org/article/S0741-5214(10)02209-3/pdf

bl3ss3d | @bl3ss3d | Apr 23, 2019

In reply to @marideth401 "It’s silly that your doctor won’t give you the CPT code just because he’s not sure..." + (show)

Good idea. I’m going to try both. 😊

marideth401 | @marideth401 | Apr 23, 2019

In reply to @bl3ss3d "Hi all, does anyone know if BCBS insurance covers MALS surgery? When I called them they..." + (show)

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.

tutorgrl | @tutorgrl | Apr 22, 2019

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?