1. < Digestive Health

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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shawbing | @shawbing | Oct 9, 2018
In reply to @ukmalsman "Hi Shawnee Welcome to Mayo. From my research the procedure your Dr recommended has worked for..." + (show)
@ukmalsman

Hi Shawnee
Welcome to Mayo. From my research the procedure your Dr recommended has worked for many in the past. Is the doctor doing the surgery a vascular surgeon? May I ask if you have got to the stage of not eating yet. If you are lucky and they caught the compression early having the surgery may be beneficial. I feel the longer the condition goes un-diagnosed the worse the symptoms get. in many of the posts you will find they can not eat as the pain gets worse leading to them losing weight rapidly. I have my surgery consultation in 2 weeks, here are the questions I will be asking that may be relevant for you too:
1) What part of the celiac trunk has been compressed?
2) What is the mean systolic velocity of the celiac artery?
3) Have you as a surgeon dealt with celiac compression before.
4) If so what is your success rate? (how many patients are pain free?)
5) Will it be necessary to have an angioplasty or stent in the artery?

I am hoping your compression is minor and you don't need the angioplasty or stenting. If the answers to the questions are satisfactory then I wouldn't leave it too long to make your decision. The longer you leave it the worse you will get. I wish you all the best, please keep us informed.

Mark

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Thank you so much! I’m able to eat but my symptoms are definitely getting worse. I’m in pain and nauseous daily (sometimes one or the other or both). I’m going to get a second opinion from a Vascular Surgeon who specializes in MALS named Dr. West, in Fort Worth, TX. The surgeon I’ve seen is a general surgeon who specializes in bariatric surgery.

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shawbing | @shawbing | Oct 9, 2018
In reply to @annief "Sure. His name is dr Gary Kimble Jett. He is at Baylor heart hospital in Plano...." + (show)
@annief

Sure. His name is dr Gary Kimble Jett. He is at Baylor heart hospital in Plano. I consulted with a general surgeon who was my second choice. I also sent my test to Dr. west in Fort Worth. I found his name on the MALS pals page on Facebook. He used to be in Houston and several on Facebook recommended him, however, when I sent him my test results, I received a call from his office saying that he would not take my case. Dr. Dennis gable was the surgeon assisting on my surgery. He Actually saw me in the hospital when I was first diagnosed. When i started getting worse again and was considering the surgery, he will referred me to Dr. Jett for the surgery. I decided to go with dr Jett because Of his credentials and at my first appointment he knew exactly what I was talking about and had no hesitation telling me what procedure he would do. Dr gable and Jett are both vascular surgeons. I am from Houston originally and a friend there recommended Dr. Charlton-Ouw. You might consider a second opinion with him. I’ll keep you posted.

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Thank you so much for the information. I have an appointment scheduled with Dr. West on October 22. He would not review my test results without an appointment. I will be sure to keep the doctors you listed in mind as well.

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sclindajanssen | @sclindajanssen | Oct 9, 2018
In reply to @ukmalsman "Hi Shawnee Welcome to Mayo. From my research the procedure your Dr recommended has worked for..." + (show)
@ukmalsman

Hi Shawnee
Welcome to Mayo. From my research the procedure your Dr recommended has worked for many in the past. Is the doctor doing the surgery a vascular surgeon? May I ask if you have got to the stage of not eating yet. If you are lucky and they caught the compression early having the surgery may be beneficial. I feel the longer the condition goes un-diagnosed the worse the symptoms get. in many of the posts you will find they can not eat as the pain gets worse leading to them losing weight rapidly. I have my surgery consultation in 2 weeks, here are the questions I will be asking that may be relevant for you too:
1) What part of the celiac trunk has been compressed?
2) What is the mean systolic velocity of the celiac artery?
3) Have you as a surgeon dealt with celiac compression before.
4) If so what is your success rate? (how many patients are pain free?)
5) Will it be necessary to have an angioplasty or stent in the artery?

I am hoping your compression is minor and you don't need the angioplasty or stenting. If the answers to the questions are satisfactory then I wouldn't leave it too long to make your decision. The longer you leave it the worse you will get. I wish you all the best, please keep us informed.

Mark

Jump to this post

Hi Mark. May I add an important question to your list for the surgeon? Ask how the surgeon addresses the celiac nerve ganglia. If the surgeon does not remove it, or partially remove it, be very very careful. You can’t image how much worse things got for many who had MALs ligament release without addressing the celiac nerve ganglia/plexus. Many good resources to read and stories to hear on Facebook MALs Awareness group. Good luck to you!

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1 reply
sclindajanssen | @sclindajanssen | Oct 9, 2018
In reply to @annief "This is good to know. Everyone Immediately wants to know how I feel, if I can..." + (show)
@annief

This is good to know. Everyone Immediately wants to know how I feel, if I can eat like normal and if all the problems are gone that I had before the surgery. It’s just hard to explain this to people that don’t have it and that it may take months for every symptom is gone.

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Did your surgeon address the celiac nerve as well as ligament release?

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1 reply
shawbing | @shawbing | Oct 9, 2018
In reply to @sclindajanssen "Did your surgeon address the celiac nerve as well as ligament release?" + (show)
@sclindajanssen

Did your surgeon address the celiac nerve as well as ligament release?

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Yes he did. But I forget the details of what that entails. I went to the appointment alone and was taken back when I heard surgery.

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annief | @annief | Oct 9, 2018
In reply to @sclindajanssen "Full recovery is much better for those who had ligament release AND celiac nerve plexus/ganglion removal..." + (show)
@sclindajanssen

Full recovery is much better for those who had ligament release AND celiac nerve plexus/ganglion removal vs those who only had ligament release.
My celiac nerve ganglia was partially removed and I’m doing well: pain is gone, no nausea, no early fullness, blood pressure stabilized, brain fog gone, abdominal and upper body swelling is gone, no more constant burping, can sleep well again, no more pounding and racing heart, no more “spraying” feeling under ribs, no more intense sweating and heat, no more arterial spasms (had 3 and those were excruciating), no more difficulty breathing due to hard diaphram, can exercise again, can take deep breaths and hold and swim under water long distance again.
So grateful!
Hope you do well. I would not trade the difficult time for anything because the gratitude found later is one of the greatest gifts one can have.

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@sclindajanssen, this is so encouraging and I will be referring back to this as I do other posts. Others have said the recovery is long and I kind of understand it now. My gallbladder removal was lapriscopic too but this is much more involved. My doctor did addressed the nerves. I am optimistic but can see I will have to be patient.

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2 replies
sclindajanssen | @sclindajanssen | Oct 9, 2018
In reply to @annief "@sclindajanssen, this is so encouraging and I will be referring back to this as I do..." + (show)
@annief

@sclindajanssen, this is so encouraging and I will be referring back to this as I do other posts. Others have said the recovery is long and I kind of understand it now. My gallbladder removal was lapriscopic too but this is much more involved. My doctor did addressed the nerves. I am optimistic but can see I will have to be patient.

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Glad it’s hellful. One more important thing for recovery: avoid sitting at all costs and lay down frequently, even if only 10 minutes here and there. Sitting causes more compression on surgical site. I got an elevating work station at 3 months post surgery and that’s when the pain really started to subside and the healing speeded up. 1 year now and I still stand at work rather than sit. I probably always will because they can’t surgically raise the diaphragm :).

REPLY
1 reply
annief | @annief | Oct 10, 2018
In reply to @sclindajanssen "Glad it’s hellful. One more important thing for recovery: avoid sitting at all costs and lay..." + (show)
@sclindajanssen

Glad it’s hellful. One more important thing for recovery: avoid sitting at all costs and lay down frequently, even if only 10 minutes here and there. Sitting causes more compression on surgical site. I got an elevating work station at 3 months post surgery and that’s when the pain really started to subside and the healing speeded up. 1 year now and I still stand at work rather than sit. I probably always will because they can’t surgically raise the diaphragm :).

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Do you recall if you took everything for the nausea? I was so week and light headed today, my sister took me to the ER. They said I was dehydrated and gave me two bags of fluids. They told me to eat and drink more. Lol. Guess I’ll call my doc tomorrow and see if I can get anything. Don’t really feel like eating and drinking when you are nauseated.

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3 replies
sclindajanssen | @sclindajanssen | Oct 10, 2018
In reply to @annief "Do you recall if you took everything for the nausea? I was so week and light..." + (show)
@annief

Do you recall if you took everything for the nausea? I was so week and light headed today, my sister took me to the ER. They said I was dehydrated and gave me two bags of fluids. They told me to eat and drink more. Lol. Guess I’ll call my doc tomorrow and see if I can get anything. Don’t really feel like eating and drinking when you are nauseated.

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Before surgery, I did not take anything. After surgery, Mayo nurses used essential oils: peppermint and lavender. And Zofran. But that really dries you out. Not good if you’re already dehydrated. I’m sorry I don’t have more tips for the nausea.

REPLY
shawbing | @shawbing | Oct 10, 2018
In reply to @jmmb "@annief thank you so much for this information. For my initial surgery in 2014 I had..." + (show)
@jmmb

@annief thank you so much for this information. For my initial surgery in 2014 I had the chief of vascular surgery at UMC Medical center in Tucson, AZ. He was great. Unfortunately for me, he moved to Texas and became chief of vascular surgery at Baylor. I was going to follow up with him once I get my next scans. in 2015 I had stents put in, and 2017 balloon. My celiac is narrowing again. My surgeon at Mayo is awesome, but doesn't have MALS experience. I was also looking at Cleveland Clinic...this is great. Now I wonder if I can get in....he should remember me though, he published a journal article about me because my case was so rare!

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What is the doctors name who became Chief of Vascular Surgery at Baylor in TX? I’m looking for a second opinion.

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