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?

@kariulrich

Thank you, Yes @lisa01 I am part of MALS PALS, but I do like the security of being here on Mayo connect vs Facebook when it comes to health information security. I was hoping that a group would start here for MALS. If we had enough patients here on Mayo Connect maybe they would consider doing a webinar in the future. I really like the format of this site. I have had Open Mals surgery twice, once for a bypass and then a revision several years later. If there is anyone interested in joining me here let me know.

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Hi:
If you are looking for a Dr. that specializes in MALS then I would suggest Dr. C. Skelly at the University of Chicago, in Chicago. He is an expert in MALS.

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@bachsmom

Hello. I turned 50 in May.. over the past two and a half years or so I have seen 37 doctors and 19 surgeons. I have had over 1.5 MM dollars in tests and procedures performed to try to figure out why I have pain when I eat that radiates around to my back. My stomach also swells to the point that I can’t even stand up or walk. There are occasions when I stay laying in the bed for days at a time and cannot get up. The pain and the nausea are just too debilitating. When I’m starving and finally just have to eat something I will take a Linzess so the food immediately gets emptied back out of my system. I have tried every diet that there is. I have tried vegan, vegetarian, macrobiotic,… Paleo, if any of them, seems to have worked a little bit for me as far as being able to eat without as much pain. I have just stumbled upon this disease and have made a call to my gastroenterologist. I think it is important to recognize that so many times when tests are done, blood work is involved. Normally when blood work is involved, they ask you to fast. The problem with that is, the pain happens when you eat, not after you have fasted. Flareups seem to happen right when you eat so you really either need to be eating or have just eaten when a test is performed. I know it’s difficult, but there is an alter sound that can be performed right after you eat that shows this artery and what it’s doing. So it can be done…That’s what the doctors don’t seem to get. And I don’t understand why. Here’s a photo of my swelling. And what I look like when I don’t eat, or when there is no swelling..Actually normal. I will go from the normal photo to the others within minutes of eating. Or sometimes just drinking a bottle of water. I can at times literally watch my belly grow with each sip. And my doctor has seen it happen too. Obviously I can’t take a picture of my pain but let’s just say I had to retire from my job,at 49, because I couldn’t go to work on a daily basis, or with any regularity because of this situation. I currently cannot keep a job. I am in bed most of the time And when I get up I can only move around for a short time before I have to lay back down. I cannot do any kind of strenuous activity or even hardly any activity at all without the swelling & the pain. I used to run 10 miles a day and work out two hours a day. Now I can’t get out of the bed.
I have COBRA but it will run out in about a year. I’m hoping someone will find something soon.

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Hi:
You need to call up the University of Chicago, there is a Dr. there that is an expert in MALS, his name is Dr. C. Skelly and he does the surgery. One of the best in the Country.

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@redhead63

Hi:
If you are looking for a Dr. that specializes in MALS then I would suggest Dr. C. Skelly at the University of Chicago, in Chicago. He is an expert in MALS.

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Hi:
Sounds like your surgery failed twice. Did you have an expert in MALS? Doesn’t sound like it.

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Welcome to all the new MALS patients here on Connect! @redhead63 I have heard wonderful things about Dr. Skelly! Thank you for mentioning him here, it is appreciated. Always helpful to have peer recommendations.

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@dpresbit

@kariulrich I'm looking at open surgery and being told I'll feel "crummy" for a week. Should I take that to mean I'll be out of work for a whole week but able to return after that (desk job doing computer work)?

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@dpresbit I have had two open surgeries… the recoveries are very long. Hospitalizations are usually a 4-5 days could be longer. I would plan on being out of work for at least 2-4 weeks minimum…. I hope other people will chime in here. I can only go by my experience, and it was at about 4 weeks were I felt I was capable of doing things on my own. My husband was off work for the first surgery for 2 weeks with me, the second one a week. Please feel free to ask questions!

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@bachsmom

Hello. I turned 50 in May.. over the past two and a half years or so I have seen 37 doctors and 19 surgeons. I have had over 1.5 MM dollars in tests and procedures performed to try to figure out why I have pain when I eat that radiates around to my back. My stomach also swells to the point that I can’t even stand up or walk. There are occasions when I stay laying in the bed for days at a time and cannot get up. The pain and the nausea are just too debilitating. When I’m starving and finally just have to eat something I will take a Linzess so the food immediately gets emptied back out of my system. I have tried every diet that there is. I have tried vegan, vegetarian, macrobiotic,… Paleo, if any of them, seems to have worked a little bit for me as far as being able to eat without as much pain. I have just stumbled upon this disease and have made a call to my gastroenterologist. I think it is important to recognize that so many times when tests are done, blood work is involved. Normally when blood work is involved, they ask you to fast. The problem with that is, the pain happens when you eat, not after you have fasted. Flareups seem to happen right when you eat so you really either need to be eating or have just eaten when a test is performed. I know it’s difficult, but there is an alter sound that can be performed right after you eat that shows this artery and what it’s doing. So it can be done…That’s what the doctors don’t seem to get. And I don’t understand why. Here’s a photo of my swelling. And what I look like when I don’t eat, or when there is no swelling..Actually normal. I will go from the normal photo to the others within minutes of eating. Or sometimes just drinking a bottle of water. I can at times literally watch my belly grow with each sip. And my doctor has seen it happen too. Obviously I can’t take a picture of my pain but let’s just say I had to retire from my job,at 49, because I couldn’t go to work on a daily basis, or with any regularity because of this situation. I currently cannot keep a job. I am in bed most of the time And when I get up I can only move around for a short time before I have to lay back down. I cannot do any kind of strenuous activity or even hardly any activity at all without the swelling & the pain. I used to run 10 miles a day and work out two hours a day. Now I can’t get out of the bed.
I have COBRA but it will run out in about a year. I’m hoping someone will find something soon.

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@Bachsmbachsmom thank you for sharing the photos, they are helpful. What kind of GI work up have you had, in addition to any vascular work up? The symptoms you are sharing are relatable to all of us!

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@techchick1025

Don’t go to MAYO. They couldn’t help or even believe me. Get all test results and contact DR Hsu in Connecticut. He’s the expert.

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@techchick1025 I have had the completely opposite experience with Mayo Clinic, they are the leaders in the number of MALS patient they treat. I have had nothing but a positive experience with my team of physicians. Unfortunately because this is a rare disease even experts don't have all the information they need… there truly is no experts with MALS, however there are physicians who have a lot of experience. We need more research without a doubt. I know emotions can get high with this disease, frustration and pain can be overwhelming. I am happy you found the help you needed.

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@ukmalsman

Hi @helenannmarie55

If I every get them published I will send you a copy!

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Let me know too @ukmalsman

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@ukmalsman

Hi @kariulrich

A woman after my own heart! I enjoyed horse riding especially as a means of getting around when I traveled to other countries. I would have taken it up if I had not become so ill with MALs, Instead I find my escape in writing novels, to which I can do anything my heart desires!

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Oh… Horse back riding can be a challenge at times. The exercise comes with pain, both from a vascular standpoint and I believe scar tissue. However for me the benefits are pain worthy. I measure food and activity by if it is pain worthy or not. LOL… I laugh, but it is quite serious, right? I think may of us hide our symptoms well.

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@kariulrich

Oh… Horse back riding can be a challenge at times. The exercise comes with pain, both from a vascular standpoint and I believe scar tissue. However for me the benefits are pain worthy. I measure food and activity by if it is pain worthy or not. LOL… I laugh, but it is quite serious, right? I think may of us hide our symptoms well.

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Hi @kariulrich
You're right we do hide our pain well, probably too well! Horse riding is a distant memory for me, I can barely travel in a car without wincing. Did you see my post on Foods for MALs sufferer posted on Nov 4th, it has helped me maintain my weight by sticking to that philosophy 'anything white is alright – stay away from anything Green, Red or Brown!'

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@kariulrich

@techchick1025 I have had the completely opposite experience with Mayo Clinic, they are the leaders in the number of MALS patient they treat. I have had nothing but a positive experience with my team of physicians. Unfortunately because this is a rare disease even experts don't have all the information they need… there truly is no experts with MALS, however there are physicians who have a lot of experience. We need more research without a doubt. I know emotions can get high with this disease, frustration and pain can be overwhelming. I am happy you found the help you needed.

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I made 4 long trips to Mayo and got absolutely no where with any single problem I have and there are many. They focused only in fibromyalgia which I’ve had for 25 years. Suggested 3 week pain management class costing thousands and completely ignored the incidental finding of avascular necrosis or my immune system and connective disease issues. I found all new fairly local DRs that are on the ball now. I look forward to getting the proper treatment and attention from DRs that actually listen and see the big picture.

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@ukmalsman

Hi @kariulrich
You're right we do hide our pain well, probably too well! Horse riding is a distant memory for me, I can barely travel in a car without wincing. Did you see my post on Foods for MALs sufferer posted on Nov 4th, it has helped me maintain my weight by sticking to that philosophy 'anything white is alright – stay away from anything Green, Red or Brown!'

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I am trying to catch up on posts, so I really appreciate you letting me know about the Nov 4th post! Look forward to reading it…. love my carbs….guessing that is what you are referring to. My cookie based diet worked wonders for helping maintain some weight…now I am into Red Bull energy drink for lunch, little pain with that.

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@techchick1025

I made 4 long trips to Mayo and got absolutely no where with any single problem I have and there are many. They focused only in fibromyalgia which I’ve had for 25 years. Suggested 3 week pain management class costing thousands and completely ignored the incidental finding of avascular necrosis or my immune system and connective disease issues. I found all new fairly local DRs that are on the ball now. I look forward to getting the proper treatment and attention from DRs that actually listen and see the big picture.

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@techchick1025 So happy to hear you got the help you needed, especially in your complicated case. I know it is difficult when you have a diagnosis of fibromyalgia and when you see a doctor it beomes easy to blame all your symptoms on fibro. I had a similar experience in my early twenties when I had symptoms of joint pain, every doctor I saw thought my pain was due to fibromyalgia. When I lost weight I was told they suspected I had an eating disorder, they thought stress and anxiety was why blood pressure was high at a young age… but no one took the time to put all the pieces together. Finally after several decades I went to Mayo and a wonderful cardiologist took a step back and put the peices of the puzzle together, a rare vascular disease. It was too late at that point to cure my hypertension, however I will say Mayo for me has saved my life. Diagnosis in a complex patient is not easy. Once I had my diagnosis it still was not black and white… there where many more diagnoses to add. Healthcare is dynamic and so is the knowledge. I can appreciate what you have gone through, especially the travel for healthcare ..it is expensive, exhaustive and can have a negative impact on over all health. Hopefully in sharing our experiences we can help each other navigate the good and the bad aspects…especially in the MALS community. I believe strongly that more support and care is needed, especially aftercare of complex patients like us. May I ask what did your local doctors do differently that made a difference to you? For MALS, finding a GI doctor that will look at a vascular cause is one area we need more awareness…so many of us are sent to GI,which is needed but when all of our GI work up comes back normal the investigation stops. Vascular disease can be invisible… especially for those under the age of 70-80, not something commonly thought of in young and middle aged adults.

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@redhead63

Hi:
Sounds like your surgery failed twice. Did you have an expert in MALS? Doesn’t sound like it.

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@redhead63 No, my surgeries did not fail at all…they were both a success. I need to explain further…I have a vascular disease called Fibromuscular Dysplasia or FMD, on top of my MALS diagnoses. My other diagnoses include Ehlers-Danlos Syndrome, brain aneurysms. My first surgery was a complete success… I had open surgery that involved a bypass of the celiac artery with a Dacron graft… after the ligament was released my velocities stayed elevated so the surgeon did the bypass…it was also determined through intraopertative ultrasound my hepatic/splenic artery had stenosis that was not picked up on imaging so I had a bovine patch angioplasty. This surgery was a complete success, I gained weight, had energy and no pain….for three years. My pain did return, but not because the surgery was not successful. During my second work up all test showed my arteries where good…but I started to loose weight, could not eat due to pain, my quality of life deteriorated to the point it was decided to do an exploratory surgery (It is very rare to have this done now, due to the technology advances in imaging) but we could not find the cause of the pain so my vascular surgeon opted to do it. My vascular disease (FMD) there is little known about it… it can occur in any of layers of the artery, it causes abnormal growth of the artery…and depending on which layer will determine type (Some types of FMD are more aggressive than others) Sure enough…when my vascular surgeon looked directly at my artery with ultrasound there was intimal tissue that had grown inside the graft. Not expected but the source of pain was found, and revision of my graft was done. Had I not had an underlying vascular disease this complication probably would not have happened. After the second surgery I was symptom free again for many years. Unfortunately the pain has returned, but I cannot keep having surgeries to investigate my graft. I am working on managing the pain currently. This will be a chronic condition for me, like others. Each of us are different, and success is in the eyes of the patient. In my eyes, both my surgeries were a complete success and I am appreciative of the compassion my vascular doctor displayed for me. Because of his skills and training I was able to have a many pain free years, and I know I will always have his support and guidance in the future. ❤️

Liked by ukmalsman

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Hello my name is Kelly and a year and a half ago I was diagnosed with a dissection of my SMA and Celiac ligament syndrome. I had bypass surgery for my SMA that took 9hrs & 47min. And this morning I am going back up to OHSU for more testing now to address my Celiac.

Snapchat-2113809623

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