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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@susanf

Ok gang. I had my lap surgery almost 2 weeks ago. I go in for my post op cheek tomorrow. Questions I have...does this cramping ever go away? I was without food for so long (30 lb weight loss) I find myself binging. Does that go away? I have not gained any weight even though I am eating in fact I have lost a pound. I believe that the surgery was successful. The surgeon commented on the right ligament as well as the bundle of nerves. He also took care of a sliding hiatal hernia at the same time.
However, yester when trying to eat breakfast and lunch I choked. Literally. I feel that same tingle in my body when it is receiving food. Not pain per se but the tingle where the pain used to be. Is it a matter of time before it all returns?
Am I just not being patient? I ask because my surgeon although he was good, is not an expert on MALS . He just performs the surgery in our area. I am seeing his assistant tomorrow as he is out of the country. I want to know what to ask and what is normal. You have all been through this before, some of you more than once.
Thank you for any advice.
Susan

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@susanf The cramping should get better over time, but it is so going. May I ask are you having diarrhea with the cramping? One thing i tell every patient that has MALS surgery, no matter lap or open.... EAT SLOW AND SMALL AMOUNTS... think you are eating slow? Eat even slower. I know this seems counter intuitive... you have surgery to fix the problem right? However it takes your body months to get use to the quantity of food and additionally the quality of food. The recovery for MALS is very long, and that can be frustrating. For me it the recovery was so gradual and slow I thought maybe the surgery did not work... but then one day out of the blue you realize you have just eaten a meal pain free. It shocks you. There seems to be a tipping point where all of sudden pain is gone and eating resumes to somewhat normal. I believe some MALS patients do end up having chronic issues/symptoms, however the symptoms are more tolerable because of the surgery. I hope this helps!

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Hello, I haven't had any surgeries. The surgeons I have seen do not want to do anything yet, although I have celiac and Mesenteric arteries completely blocked. The third artery is 75% blocked. I am getting blood flow through several collateral arteries but does not give me completely what I need. . I will see my gastro next week. I really do not know what is going to happen. I have already had two bowel obstruction surgery in the last 10 years. I think due to not enough blood flow.

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@dave06351

Hey, So my back is absolutely RIPPING. Has anyone else experienced this as a part of MALS? This Mid-back pain is excruciating and I find it hard to believe that it's from the MALS.

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What type of surgeries did you have and were they successful?

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@susanf

Okay here goes. After a year of up and down pain and ER trips. The past 3 months of Dr. appointments, GI, every scope, ultrasound sound, CT scan to be done. Of course as all of you know to be told everything is normal. Until a visit to the ER when a Dr. there suggested to look for Mesenteric ischemia.
This test shot me to a referral to a vascular surgeon who then did an ultrasound. Who shot me a referral to a general surgeon. With a a diagnosis of MALS.
Here I sit in pain awaiting a consult in 4 days for what looks like a extremely scary surgery. I can't eat anything without pain!
I have lost a total of 27 pounds to date. 3 pounds in the past week. 5 pounds the week before.
Now I'm not a large woman to start with so I don't think losing too much more will be very healthy. I'm weak, tired and spend a lot of time in bed.
I want to know what questions to ask the surgeon. I have already had two really big scary surgeries in the last 2 years. I made it through those, I don't want to die from some darn strange stomach surgery.
HELP
Thank you in advance for any advice or comfort
Susan

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This doesn't sound good to me. They told you two arteries are completely occluded and third is 75% blocked. I don't understand why they wouldn't consider that an emergency situation. I am not trying to scare you, but I would hate to see anything happen. Is there another vascular surgeon you can go to for a second opinion? Sometimes a good GI dr. will know as well. Unfortunately I can't even find a good GI dr. for GI stuff!!! Please let me know how you are doing.

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@grandmajo

Hello, I haven't had any surgeries. The surgeons I have seen do not want to do anything yet, although I have celiac and Mesenteric arteries completely blocked. The third artery is 75% blocked. I am getting blood flow through several collateral arteries but does not give me completely what I need. . I will see my gastro next week. I really do not know what is going to happen. I have already had two bowel obstruction surgery in the last 10 years. I think due to not enough blood flow.

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Wow, I did just post in the other place after your post. I really don't understand why they would wait. Are they thinking it is something else? Although if they already said the are completely blocked, I don't get it. When I had my first open, both my celiac and sma arteries where narrowed to the point the velocities were of the charts. I was very thin. My surgeon said I didn't fit the typical MALS patient because weight loss is a big symptom, but non the less, that was my diagnosis. Everyone is not the same. I always had issues with my stomach so I was used to constant pain. I was a teacher and asked if I could wait a few more weeks and do it on spring break and he said no.To many risks, stomach can die off from not enough blood supply. Again I am not trying to scare you, everyone is different, but this does sound concerning to me. @kariulrich what are your thoughts....

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@dave06351

Hey, So my back is absolutely RIPPING. Has anyone else experienced this as a part of MALS? This Mid-back pain is excruciating and I find it hard to believe that it's from the MALS.

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I had open angio plasty for sma and cut part of the diaphragm to release the celiac. Not sure of all the technical terms. Long surgery, 7 plus hours. They did a lot of stuff. I think the celiac was so entangled as well and pushed the sma farther or something like that. Anyway surgery was successful, the pain was gone, it was slow recovery in just getting in and out of bed. Huge incision across from top of ribs kind of vertical to down over the belly button. By 4th or 5th month they started narrowing again. Continued so by a little over a year and a half I had stents put in each artery. Open by pass would have been best option, but I was physically to weak. I had a lot of stress going on aside from the physical issues that really effected my recovery. Then this past Oct. I had angio and balloon in the celiac. I still have a lot of pain. I had some relief after both of these procedures, but keeps narrowing. I don't know why. Also there is the issue of celiac ganglion nerves. I didn't even know about that until the past year. It could also be from that nerve pain. But if your scans are showing occlusions I would think that isn't the main problem. There are a lot of people that have MALS surgery, open or lap and after recovery are symptom free. Like I say, everyone is different. You also need a qualified MALS surgeon and qualified person doing and reading any of the images.... I wish you luck and please keep us posted.

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@dave06351

Hey, So my back is absolutely RIPPING. Has anyone else experienced this as a part of MALS? This Mid-back pain is excruciating and I find it hard to believe that it's from the MALS.

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I went back to Dr. Hsu after further consoltation... He said I have bigger unrelated issues going on that I need to resolve. DROPPED. Still doing pretty bad; but, I'm guessing that things are thoracic at this point.

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Hi. I’m new here. I had Celiac Artery Decompression in 9/2016. It started as epigastric pain after a Nissen Fundoplication 1/2016. I lost 76 lbs I was hospitalized many times. One time I met a wonderful surgeon who ordered testing of my celiac artery. Low and behold, that was the problem. This surgeon is VERY THOROUGH!
He needed to do a Endoscopy on me first to look at my Nissen. Once that was done in August, e planned the Laparoscopy Celiac Artery decompression. He rarely does open ones. In my case, he needed to take apart my Nissen to do the decompression then restructure the Nissen. This surgeon even CALLED ME THE NIGHT BEFORE THE SURGERY! I was amazed. The surgery went well. I stayed overnight. I was discharged the next day. His diet protocols were slow and steady. It took me 3 months to feel better and gain weight. The surgeon
was just on the cusp of starting a feeding tube. He saw me routinely until I felt better and was gaining weight.
About 1 month ago, the symptoms returned. I called the previous surgeons office, left a message as to how to proceed. He the proceeded to call me back that afternoon to discuss what I should do next. He is awesome!
So I’m following up with the Vascular Team tomorrow. Day by day the epigastric Pain worsens, nausea and dry heaves worsens, any activity like walking gives me more nausea and pain. The next step is a stent I was told by vascular. It is an awful condition.
Interesting enough, my younger sister has MALS also but in a different artery.

Wishing all here less pain..

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@beachbumgirl

Hi. I’m new here. I had Celiac Artery Decompression in 9/2016. It started as epigastric pain after a Nissen Fundoplication 1/2016. I lost 76 lbs I was hospitalized many times. One time I met a wonderful surgeon who ordered testing of my celiac artery. Low and behold, that was the problem. This surgeon is VERY THOROUGH!
He needed to do a Endoscopy on me first to look at my Nissen. Once that was done in August, e planned the Laparoscopy Celiac Artery decompression. He rarely does open ones. In my case, he needed to take apart my Nissen to do the decompression then restructure the Nissen. This surgeon even CALLED ME THE NIGHT BEFORE THE SURGERY! I was amazed. The surgery went well. I stayed overnight. I was discharged the next day. His diet protocols were slow and steady. It took me 3 months to feel better and gain weight. The surgeon
was just on the cusp of starting a feeding tube. He saw me routinely until I felt better and was gaining weight.
About 1 month ago, the symptoms returned. I called the previous surgeons office, left a message as to how to proceed. He the proceeded to call me back that afternoon to discuss what I should do next. He is awesome!
So I’m following up with the Vascular Team tomorrow. Day by day the epigastric Pain worsens, nausea and dry heaves worsens, any activity like walking gives me more nausea and pain. The next step is a stent I was told by vascular. It is an awful condition.
Interesting enough, my younger sister has MALS also but in a different artery.

Wishing all here less pain..

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Thank you for sharing your experience! You have been through a lot. It sounds like your surgeon is on top of this, please keep us up-to-date on what your next step is. So many of us do well, and unfortunately the pain returns. Welcome to Mayo Connect, it is so helpful to others to hear each person's experience. What are you doing to control the pain currently?

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Pain and nausea are bad. Not taking anything for pain. Tomorrow I’m having a CT scan followed by a Vascular Surgeon appt.

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