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?

Do you know any doctors in Arizona that treat MALS

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Do you know of any doctors in Arizona that treat MALS?

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The MALs Awareness Facebook group has list of MALs docs and location in their files on the top menu item.

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@helenannmarie55

I would buy your books I think I would relate

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Hi @helenannmarie55

If I every get them published I will send you a copy!

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@sclindajanssen

Yes, there was a study published in a journal. The researcher studied the celiac artery in many cadavers and concluded that something like 35% had MALs anatomy. Of course there are many limitations with that study such as all participants being deceased. But researchers assert that only 1% of that 35% have Sxs. Research is valuable but can’t prove anything, so we take those stats with a grain of salt.

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Hi @sclindajanssen and @astaingegerdm

Thanks for the info, I had come across this but didn't want to believe it. Doctors, consultants and surgeons are considered to be some of the smartest people in society, how can such intelligent people base everything on such a study. They would second guess the dead rather than listen to the living! Looking at MALs in dead people has far too many variables for them to even draw a hypothesis. Because of this belief MALs will stay as a condition of exclusion. MALs sufferers worldwide will continue to suffer silently undergoing unnecessary operations and years of diagnostic procedures making it too late to treat when they do finally find the compression. It takes guts to speak out against this like Dr Hsu from Connecticut who I believe is not very popular amongst fellow surgeon because of how he treats MALs. Sometimes it takes a pioneer to push the boundaries of what we know to change how others think. If I could afford to be treated by Dr Hsu I would fly out to America tomorrow. I think it is up to us the sufferers to help with that change in mindset by demanding similar surgery from our surgeons, it seems that the earlier the treatment with extensive cutting back of the ligament and Nerve bundle the better the prognosis.

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@ukmalsman

Hi @sclindajanssen and @astaingegerdm

Thanks for the info, I had come across this but didn't want to believe it. Doctors, consultants and surgeons are considered to be some of the smartest people in society, how can such intelligent people base everything on such a study. They would second guess the dead rather than listen to the living! Looking at MALs in dead people has far too many variables for them to even draw a hypothesis. Because of this belief MALs will stay as a condition of exclusion. MALs sufferers worldwide will continue to suffer silently undergoing unnecessary operations and years of diagnostic procedures making it too late to treat when they do finally find the compression. It takes guts to speak out against this like Dr Hsu from Connecticut who I believe is not very popular amongst fellow surgeon because of how he treats MALs. Sometimes it takes a pioneer to push the boundaries of what we know to change how others think. If I could afford to be treated by Dr Hsu I would fly out to America tomorrow. I think it is up to us the sufferers to help with that change in mindset by demanding similar surgery from our surgeons, it seems that the earlier the treatment with extensive cutting back of the ligament and Nerve bundle the better the prognosis.

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Your words are profound and spot on! Thank you

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Hi I’ve had surgery for MALS not sure if you’re still interested in this condition. If you would like more information please let me know. Thanks Rachel

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@imalady2

I haven’t-But it’s actually a topic with a patient on Greys Anatomy tonight!
(Season 15, Episode 5@10/25/18)
It was very difficult to diagnose, and the young lady kept being told it was all in her head. I’ve been an RN over 30 years and have never met a patient with it.

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I was told it was all in my head for nearly a year then finally they found it. I had full open surgery in 2013 here in Australia.

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I am a lung cancer survivor only because Mayo doctors discovered I had lung cancer!, even though I never smoked! At Mayo, I went into life saving surgery immediately…All the while (2)
two years before local doctors told me my symptoms were in my head.
Get a second or third opinion, no matter how much you respect your physician!!!! No one knows your body like you!

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@skyewest

I was told it was all in my head for nearly a year then finally they found it. I had full open surgery in 2013 here in Australia.

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I’m surprised you found someone in Australia because there was a news story about someone in Australia who had to travel to US for MALs surgery as no one could do it in Australia. So I’m glad there really is a surgeon for MALs in Australia. How are you doing now, 5 years later?
I had lap a year ago and now mild symptoms are just starting to return. I’ve been wondering if open lasts indefinitely.

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Hi everyone, so good to see this page active! I came across my caring bridge page which has all my posts from my first and second MALS surgeries. In case anyone is interested in what it was like for me before and after surgery. If anyone else has a caring bridge page and would like to share it that would be wonderful! Thanks Kari https://www.caringbridge.org/visit/kariulrich

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@kariulrich I'm looking at open surgery and being told I'll feel "crummy" for a week. Should I take that to mean I'll be out of work for a whole week but able to return after that (desk job doing computer work)?

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