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.

I'm a 59 year old man in Australia. I have been diagnosed with MALS however I have little to no pain. My problem is debilitating and ongoing nausea which has been constant for 2 years.
I'm wondering if anybody else has the terrible nausea without the terrible pain.

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@kanaazpereira

Hello @cornishrex,

Welcome to Connect. I'm sorry to learn about your diagnosis, and glad that you've joined us here.

I’m confident that @kariulrich will reply to you soon. It helps so much to hear from others who have experience with the same condition. I'm also tagging @artistgma @evileye00 @lmtuska @evrose23 @jamorris9 @sarah1317 @coffeelatte @azbluebird who have all posted and shared their experiences in this discussion.

@cornoshrex, how are you managing your symptoms currently?

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Hi Grace here. I was diagnosed with MALS recently and have been suffering with severe chest pain for almost a year Hurts more after I eat. I see vascular surgeon in March. I spoke to her nurse. The surgeon only does the surgery where they open your stomach not laperoscopic. Anyone have this surgery? Or these symptoms. I feel so alone and isolated. Thankyou!

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Hi
I have been struggling with MALS for 3 years..struggling with MALS . You are not alone. There many of us out there struggling.
Facebook has a wonderful support group called MALS PALS and and MALS Awareness Community . This is a page where you can ask questions and share your experiences withe others who have MALS. There are also a list of files at the stop of the page that show you surgeons that have been used.
With the use of these Facebook Pages, my husband and I diagnosed that I had MALS. It is a very complicated and rare to diagnose because everyone is so different with the symptom's. It took over 30 diagnostic tests to confirm I had it because MALS is a combination of a process of elimination of tests. The final tests doctors will die after ruling out GI issues are CTA Angiogram with and without contrast and using breathing protocols, Mesenteric Doppler Ultrasound with breathing protocols and Celiac Plexus Block. This test is usually the last test a vascular surgeon will do. If you are relieved of pain after eating for atleast 4-6 hours, chances are you are a good candidate for surgery. Some doctors will do robotic Lap, Lap, or Open surgery.
I had a Robotic Lap almost 2 years ago, unfortunately, it didn't work and the compression was still there. I had Open Surgery in November and so far I'm better but not perfect. Recovery time can be very long unfortunately and can take up to a year. Everyone is so different.
Be sure to do your research and find a good Vascular surgeon with lots of experience, not just a couple.
Also research the MALS Foundation National Median Arcuate Ligament Foundation, its a nonprofit with alote of good information.

Hope this helps and Good Luck!

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I suffered from undiagnosed mals for 17 years. I had every gi test and sometimes twice. I’m so very thankful for this site as it lead me to Mals Awareness Facebook group. It’s easy to find information and ask questions. I also self diagnosed myself through information and researching. It lead me to a doctor who, 4 years ago, was one of the few doctors who treated mals. My vascular doctor told me he had done three with not much success, so I chose to go across the country to a doctor, who at that time had done over 300 with great successes. I was in so much pain, narcotics didn’t touch it. I had lost 30 pounds and was continuing to do so. My husband and I chose to have open surgery and I knew upon waking from surgery that the mals pain was gone. It took 7-8 months of recovery. I do have a lot of residual problems because it took 17 years to find a diagnosis, but I’m so thankful for the support and encouragement I get from others who have been down this long, lonely road. Just some advice, get checked for mals, nutcracker, pots, Elder Danlos and smas because correcting mals can sometimes cause other vascular compressions to show up. I’m so sorry you’re going through this. Hugs!

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@bfort

Hi
I have been struggling with MALS for 3 years..struggling with MALS . You are not alone. There many of us out there struggling.
Facebook has a wonderful support group called MALS PALS and and MALS Awareness Community . This is a page where you can ask questions and share your experiences withe others who have MALS. There are also a list of files at the stop of the page that show you surgeons that have been used.
With the use of these Facebook Pages, my husband and I diagnosed that I had MALS. It is a very complicated and rare to diagnose because everyone is so different with the symptom's. It took over 30 diagnostic tests to confirm I had it because MALS is a combination of a process of elimination of tests. The final tests doctors will die after ruling out GI issues are CTA Angiogram with and without contrast and using breathing protocols, Mesenteric Doppler Ultrasound with breathing protocols and Celiac Plexus Block. This test is usually the last test a vascular surgeon will do. If you are relieved of pain after eating for atleast 4-6 hours, chances are you are a good candidate for surgery. Some doctors will do robotic Lap, Lap, or Open surgery.
I had a Robotic Lap almost 2 years ago, unfortunately, it didn't work and the compression was still there. I had Open Surgery in November and so far I'm better but not perfect. Recovery time can be very long unfortunately and can take up to a year. Everyone is so different.
Be sure to do your research and find a good Vascular surgeon with lots of experience, not just a couple.
Also research the MALS Foundation National Median Arcuate Ligament Foundation, its a nonprofit with alote of good information.

Hope this helps and Good Luck!

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Thank you so much for replying to me for replying to me. It feels wonderful not to feel so alone. I have done all of those tests. My doctor has a ton of experience with MALS at UVA in VA. have you fully recovered from your surgery? Do you still get pain in your chest?

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I too have MALS. I went through many tests as well. Thank God for the cta of stomach and finally the special ultrasound at vascular surgeons office that confirmed it. I have an appt with surgeon in March. She makes her patients get the block first. Then the surgery. Have you found a surgeon yet?

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@graceym1

Thank you so much for replying to me for replying to me. It feels wonderful not to feel so alone. I have done all of those tests. My doctor has a ton of experience with MALS at UVA in VA. have you fully recovered from your surgery? Do you still get pain in your chest?

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I am still in recovery. This is a slow process. It will be 2 months tomorrow since my open surgery and its an up and down battle with pain. I can eat so I'm happy with that. Recovery can be long, but everyone is so different. These facebook pages saved my life. They provide so much support and answer so many questions, most doctor's can't.
I try to watch what I eat because your body needs t kearny how to accept food again with the new blood flow. Good Luck!

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@graceym1

I too have MALS. I went through many tests as well. Thank God for the cta of stomach and finally the special ultrasound at vascular surgeons office that confirmed it. I have an appt with surgeon in March. She makes her patients get the block first. Then the surgery. Have you found a surgeon yet?

Jump to this post

I had surgery 2 months ago. I went to Ohio from Florida. Dr. Woosup Park did my Open surgery. He and his hospital staff were awesome. I go back in March for a 3 month visit and ultrasound. An experienced, kind , caring experienced Vascular Surgeon is so important. This is a very tough surgery and recovery, but its worth it.

REPLY
@bfort

Hi
I have been struggling with MALS for 3 years..struggling with MALS . You are not alone. There many of us out there struggling.
Facebook has a wonderful support group called MALS PALS and and MALS Awareness Community . This is a page where you can ask questions and share your experiences withe others who have MALS. There are also a list of files at the stop of the page that show you surgeons that have been used.
With the use of these Facebook Pages, my husband and I diagnosed that I had MALS. It is a very complicated and rare to diagnose because everyone is so different with the symptom's. It took over 30 diagnostic tests to confirm I had it because MALS is a combination of a process of elimination of tests. The final tests doctors will die after ruling out GI issues are CTA Angiogram with and without contrast and using breathing protocols, Mesenteric Doppler Ultrasound with breathing protocols and Celiac Plexus Block. This test is usually the last test a vascular surgeon will do. If you are relieved of pain after eating for atleast 4-6 hours, chances are you are a good candidate for surgery. Some doctors will do robotic Lap, Lap, or Open surgery.
I had a Robotic Lap almost 2 years ago, unfortunately, it didn't work and the compression was still there. I had Open Surgery in November and so far I'm better but not perfect. Recovery time can be very long unfortunately and can take up to a year. Everyone is so different.
Be sure to do your research and find a good Vascular surgeon with lots of experience, not just a couple.
Also research the MALS Foundation National Median Arcuate Ligament Foundation, its a nonprofit with alote of good information.

Hope this helps and Good Luck!

Jump to this post

Thankyou so so much. Sorry you’re suffering with this as well. I’m glad the second surgery helped. My surgeon only does the open surgery. She’s had the most success with it. I have to get the block sometime in March. I’m told you get some meds so you’re a bit out of it. I pray it works. I’ve had all the other tests as well. I’ll try Mals pals! God bless. Keep in touch!

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@bfort

I had surgery 2 months ago. I went to Ohio from Florida. Dr. Woosup Park did my Open surgery. He and his hospital staff were awesome. I go back in March for a 3 month visit and ultrasound. An experienced, kind , caring experienced Vascular Surgeon is so important. This is a very tough surgery and recovery, but its worth it.

Jump to this post

Sorry for all you’ve had to go through. I’m glad you found a great surgeon! That’s awesome. How are you feeling? How long were you in the hospital? I was told a week.

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