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?

@azbluebird

Thanks everyone, especially for the surgeons name.

I’m currently waiting to hear back from MALS PALS to be “friend-ed”

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@azbluebird did you hear back from MalsPals? How are you doing??? I have been thinking about you.

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I was just diagnosed with Celiac Artery Compression Syndrome following a CT Angio. I am being referred to a vascular surgeon but would like to be sure to talk to one that is familiar with the syndrome. I live in San Diego and have access to the doctors at UCSD. How do I find one that will best be able to help me.

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I have been diaignosed w Mals recently. I am having surgery in Aug…There is a website MalsPals, you can join therm..Theres very good info on thst website.

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@carolina58

I have been diaignosed w Mals recently. I am having surgery in Aug…There is a website MalsPals, you can join therm..Theres very good info on thst website.

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This web support page? malssupport.com I couldn’t find anything regarding physicians here.

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@cornishrex

I was just diagnosed with Celiac Artery Compression Syndrome following a CT Angio. I am being referred to a vascular surgeon but would like to be sure to talk to one that is familiar with the syndrome. I live in San Diego and have access to the doctors at UCSD. How do I find one that will best be able to help me.

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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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@cornishrex

I was just diagnosed with Celiac Artery Compression Syndrome following a CT Angio. I am being referred to a vascular surgeon but would like to be sure to talk to one that is familiar with the syndrome. I live in San Diego and have access to the doctors at UCSD. How do I find one that will best be able to help me.

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Welcome @cornishrex! When you see your vascular specialist ask them how may surgeries they do a year, what surgical approach they use and why? I sometimes go through the list of doctors at a medical center, many have bios and search what their area or interest is. Another way is go to google scholar and see who has published in the area of Celiac Artery Compression Syndrome. Always ask questions, it is ok to get second and third opinions. You will know when you find the doctor that best suits you.

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@carolina58

I have been diaignosed w Mals recently. I am having surgery in Aug…There is a website MalsPals, you can join therm..Theres very good info on thst website.

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I copied and pasted the link below, also here is what is listed for California (Thank you MalsPals for keeping this list updated!) California
Los Angeles
UCLA
Dr. Deugarte

Los Angeles
UCLA
Dr. Jimenez

Santa Monica

Dr. Anton Bilchik

Santa Monica

Dr. Quinones-Baldrich

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Thanks Kari. I am close to UCLA but not convenient. As if that matters when it comes to the surgery. After many years of unresolved pain and CT after CT I have a diagnosis from a CT Angio. Really, I wonder if it’s a crazy fluke or some really great technician catching it.

I want my first visit to a vascular surgeon to be someone I am comfortable with and I want to be prepared with all my questions before I go. UCSD has some great doctors and I’ll call tomorrow and see if their department can help me find the right doctor.

If this is the actual problem then I will feel great relief that I am not a hypochondriac! I have a pretty good health history. About 18 years ago I had a tubal pregnancy and when they did the laparoscopy to removed it they nicked my bowel and had to open me all the way up. Periodically since then I have diverticulitis attacks that come and go. Maybe every couple of years. When I complain about this pain they say it’s GERD. My only other health condition is chronic migraines and it makes any medication or change in diet very difficult. I do have Hashimotos Thyroiditis which is autoimmune. Really, what I’m trying to say is that I don’t suffer from other vascular or gastro problems. My first attack with this pain was 7 years ago in the middle of the night and we thought it was a heart attack. There was no diagnosis from that 3 day hospital stay. In the past few years the pain has been pretty constant, sometimes better than others.

I love first thing in the morning when I wake up and am lying there, for just a few minutes, when there is no pain. It is the nicest thing. Then the pain washes through me.

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@cornishrex

Thanks Kari. I am close to UCLA but not convenient. As if that matters when it comes to the surgery. After many years of unresolved pain and CT after CT I have a diagnosis from a CT Angio. Really, I wonder if it’s a crazy fluke or some really great technician catching it.

I want my first visit to a vascular surgeon to be someone I am comfortable with and I want to be prepared with all my questions before I go. UCSD has some great doctors and I’ll call tomorrow and see if their department can help me find the right doctor.

If this is the actual problem then I will feel great relief that I am not a hypochondriac! I have a pretty good health history. About 18 years ago I had a tubal pregnancy and when they did the laparoscopy to removed it they nicked my bowel and had to open me all the way up. Periodically since then I have diverticulitis attacks that come and go. Maybe every couple of years. When I complain about this pain they say it’s GERD. My only other health condition is chronic migraines and it makes any medication or change in diet very difficult. I do have Hashimotos Thyroiditis which is autoimmune. Really, what I’m trying to say is that I don’t suffer from other vascular or gastro problems. My first attack with this pain was 7 years ago in the middle of the night and we thought it was a heart attack. There was no diagnosis from that 3 day hospital stay. In the past few years the pain has been pretty constant, sometimes better than others.

I love first thing in the morning when I wake up and am lying there, for just a few minutes, when there is no pain. It is the nicest thing. Then the pain washes through me.

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You have been through so much! Unfortunately when it comes to celiac compression many of us have had such an extensive work up prior to being diagnosed. My Compression was found on a cath angiogram. I had symptoms for decades, going through so many different treatments and GI tests. Vascular disease seems to be a diagnosis looked at after everything else has been ruled out. Please keep me updated as you go through this process. Please know you are not alone, between Mayo Connect and MALS PALS you have a great group of people with you for this journey. I have had 2 surgeries and going through another work up to deal with relapsing pain, would have not made it if it was not the support and compassion with these communities! Have you had any weight loss with all your symptoms?

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I was just diagnosed 2 days from a CT scan and have appointment with vascular surgeon on August 1st. This is so scary not sure what to expect? More test envolved??

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@bpayne

I was just diagnosed 2 days from a CT scan and have appointment with vascular surgeon on August 1st. This is so scary not sure what to expect? More test envolved??

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Welcome @bpayne, Have you had any GI work up done? What symptoms ar you having? Depending on the doctor many like to have you get a celiac block first to see if it helps the pain or not.

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Yes egd, us of gallbladder and Judaism scan. All negative. All blood work is good.

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That’s a hida scan! Not sure what this spell check was saying!

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Ha ha Got to love spell check! Do have any motility issues?

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