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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?

Interested in more discussions like this? Go to the Digestive Health Support Group.

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Kari Ulrich, Alumna Mentor | @kariulrich | Apr 8, 2019

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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Kari Ulrich, Alumna Mentor | @kariulrich | Apr 8, 2019
In reply to @chicken "Does anyone find that they crave salt and absolutely NEED it? I'm wondering if this is..." + (show)
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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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Kari Ulrich, Alumna Mentor | @kariulrich | Apr 8, 2019
In reply to @ukmalsman "Hi @kariulrich It’s been a long time since I have been on here due to poor..." + (show)
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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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ukmalsman | @ukmalsman | Apr 7, 2019
In reply to @kariulrich "Let's try this!" + (show)
Profile picture for Kari Ulrich, Alumna Mentor @kariulrich

Let's try this!

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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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kellylinn | @kellylinn | Apr 7, 2019
In reply to @kariulrich "Thank you, Yes @lisa01 I am part of MALS PALS, but I do like the security..." + (show)
Profile picture for Kari Ulrich, Alumna Mentor @kariulrich

Thank you, Yes @lisa01 I am part of MALS PALS, but I do like the security of being here on Mayo connect vs Facebook when it comes to health information security. I was hoping that a group would start here for MALS. If we had enough patients here on Mayo Connect maybe they would consider doing a webinar in the future. I really like the format of this site. I have had Open Mals surgery twice, once for a bypass and then a revision several years later. If there is anyone interested in joining me here let me know.

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I'm interested
I underwent a SMA bypass surgery 10 hours and now am facing the next battle with my Celiac diagnosed with both disorders.

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chicken | @chicken | Apr 7, 2019

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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Anonymous176862 | @anonymous176862 | Apr 6, 2019
In reply to @kariulrich "@tutogrl Yes!! I cannot wear belts, I eat laying down sometimes... I often when sitting have..." + (show)
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@tutogrl Yes!! I cannot wear belts, I eat laying down sometimes... I often when sitting have my knees up to my chest. I wear low rise pants because I cannot handle anything on my tummy!

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I have the same issue. I now have a hernia from my MALS surgery in 2013. I'm having issues as I did before surgery. No one wants to touch me. Do you think coming to Mayo since I have FMD as well will help? Thanks!

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Kari Ulrich, Alumna Mentor | @kariulrich | Apr 5, 2019
In reply to @dave06351 "That link doesn't work for me. Maybe because I'm using a smartphone for access." + (show)
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That link doesn't work for me. Maybe because I'm using a smartphone for access.

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Let's try this!

Shared files

UPDATED MALS SURGEON LIST 3 (UPDATED-MALS-SURGEON-LIST-3.25.18.pdf)

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Kari Ulrich, Alumna Mentor | @kariulrich | Apr 5, 2019
In reply to @dave06351 "Long time no see... Dr. Hsu refused to do my surgery because of the injury that..." + (show)
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Long time no see... Dr. Hsu refused to do my surgery because of the injury that caused the issue. I've tried everything but the log story is I need this surgery in order to restore functionality of my muscles in my back. Being unable to bend or twist without aggravating the nerve center is causing a lot of other problems.

I need a surgeon list and the types of decompression they do. Does anyone have that info? I've requested access to mals pals but no response yet.

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@dave06351 there is a peer-recommended list. You can find the updated list on mals pals under files. https://lookaside.fbsbx.com/file/UPDATED%20MALS%20FRIENDLY%20SURGEON%20LIST%204.8.18.pdf?token=AWyptRidNd0VuqcLxpdW14BhozN8m0Ha0HHgt7-hp-RP2OL3p5Fli7rmT6xGv7CyF6vhZWFqXshc3nexnpvarvperKTxuTGoFT__O5QQiWUZB1btXs6xOP6q9wYwJWtZqQnrdBsIq3Q8bjJARdinofV1

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