Median Arcuate Ligament Syndrome (MALS)

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?

@annief

Also wanted to post this article if possible. The Cleveland Clinic has reached out to other hospitals to share their knowledge on vascular issues for people that cannot travel to the clinic. https://consultqd.clevelandclinic.org/cleveland-clinic-teams-with-three-baylor-hospitals-to-provide-heart-care/. I consulted with three docs before deciding. Two vascular and one general surgeon.

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@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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I had MALs lap surgery at Mayo 1 year ago. I’m doing great now. About 15 signs/symptoms disappeared after surgery. Lap surgery was tougher than expected. Much more difficult than my C-sections. 2 months of nausea, 8-10 months of fatigue. But very well worth it.

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@sclindajanssen

I had MALs lap surgery at Mayo 1 year ago. I’m doing great now. About 15 signs/symptoms disappeared after surgery. Lap surgery was tougher than expected. Much more difficult than my C-sections. 2 months of nausea, 8-10 months of fatigue. But very well worth it.

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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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@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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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.

Liked by ukmalsman

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@annief

Hi Shawnee, I live in Dallas. I just had robotic lapriscopic surgery on Wednesday. I am just starting third day post op so I can’t say yet how I feel cause I have all the pain from the surgery. My surgeon is older so he has done this before. He was very confident in what needed to be done. He told my family when came out that it was very successful. Another vascular surgeon was ready to assist but was not needed. They were ready to convert to open if needed but didn’t him after al. I will update as I progress. I believe I can tell that I am able to eat more and don’t have that after eating pain but as I said, I’m holding cmmenting too much till I am out of this surgical pain.

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That’s fantastic your surgery was successful. I’m going to see Dr. West in Fort Worth for a second opinion. What is your doctor’s name?

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@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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@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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@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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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!

Liked by ukmalsman

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@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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@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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@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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@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 :).

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@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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@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.

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@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.

Liked by jmmb

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