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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Kari Ulrich, Alumna Mentor | @kariulrich | Jan 29, 2018
In reply to @jmmb "Hi @kariulrich and everyone else who knows a little about my history. I am hoping someone..." + (show)
@jmmb

Hi @kariulrich and everyone else who knows a little about my history. I am hoping someone can give me some guidance/advice on how to handle, or what to do on something. I thought going to Mayo, all the different drs. were suppose to meet and discuss your individual case. Mine don't. I love my vascular surgeon, I am not to happy with the GI dept. I have a 'fellow' and my vascular surgeon said I should ask for the attending dr instead. He is not happy with that dept either. Then my primary wants me to see a cardiologist. she also thought I could maybe have POTS, like you had mentioned Kari. I have the light headedness, tingling in feet and hands, and low blood pressure besides the constant fatigue. I can't get in to the cardiologist at Mayo until end of May, so maybe my surgeon can do something on that. I don't want to be disrespectful or hurt feelings, but I need answers and want to know why aren't drs talking to each other. I feel like I am the one to do the research and bring the information, and then I feel like they may think I am 'looking for something wrong' or something. If tests are ok then I am okay, well not if I don't feel right. Anyway, I am frustrated and just afraid when I go next week to the follow up surgeon visit for imaging from the balloon in celiac artery in Oct. I am not going to ask what I need and get any answers and leave in pain with nothing new. Believe me, I don't want anything wrong or any procedure, but some answers or something, you know what I mean.....
Tired of being in pain, and tired all the time and feel like I find so many connecting things, but why don't they you know. ???
Oh well, Kari I hope you are doing better on the Cymbalta. I am doing the pharmalogoical testing. My dr. just got the kit in, but since I have moved, it takes me 1 1/2 hrs to get to her, so not sure when I will get there again. She is awesome and I don't want to loose her....
Well if anyone has any advice or has felt this way, please let me know. Thanks

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@jmmb There is a GI doctor at mayo rochester who understands the vascular nature of MALS, but I have seen several also who are not familiar with this diagnosis, but with that said they are specialist and usually hand you back to your primary. In my experience GI does not follow chronic MALS, however they should be communicating with your team of physicians. I believe that since MALS is so rare there is not a good understanding of the disease, especially when all of our GI test come back normal. It can be quite frustrating. There has to be a better way to educate our physicians and specialist in what we experience. MALS dramatically affects the quality of life many of us lead, and it can be quite severe at time. What makes this diagnosis difficult is that some MALS patients do not have symptoms return, unfortunately for those of us who are chronic MALS patients we become more complex to treat. What I recommended is keep communicating with all specialist and advocating for yourself, tell them your concerns as you stated here. I do not know of one physician who would be opposed to hearing your frustrations and your experience. I have always shared the good and bad with my doctor's, you would be surprised how open they can be once they have a complete understanding of the problem.

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jmmb | @jmmb | Jan 29, 2018
In reply to @kariulrich "@ruudolpho Cleveland Clinic has an amazing vascular clinic, I have had the opportunity to follow a..." + (show)
@kariulrich

@ruudolpho Cleveland Clinic has an amazing vascular clinic, I have had the opportunity to follow a patient through their appointments many years ago and I have to say they did a tremendous job in caring for this patient. I am happy to hear the Lyrica has given you some relief, and the ability to sleep at night. I do think not sleeping contributes to the pain. Have you noticed any side effects from the Lyrica? May I ask if you have lost any additional weight? I just posted several links on a response to @jmmb about pharmacogenetic testing, I will post them here also. I am sure Cleveland Clinic has this type of testing, for me it was helpful to know how my body metabolizes meds and which meds are better suited for me. It is so time intensive and not much fun going through different meds to see which ones work. This is the company that did my testing at Mayo, you do not need to have it done through Mayo, but you do need a doctor to order it: https://oneome.com also this explains what testing can help with: http://mayoresearch.mayo.edu/center-for-individualized-medicine/drug-gene-testing.asp It is rather complicated and I found it helpful to go through the individualized medicine department. I am very interested to hear what you think about medical cannabis! I have never had vitamin and minerals checked, that is very smart thing for all MALS patients! I appreciate you sharing that, I would think as our bodies are so malnourished this would be helpful in getting out health and well-being back on track. It is good to hear from you Lou!

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Hi Kari, yes I think they did, then they gave me oxycodone. I feel better, but still achy all over. I am getting more chest pain again, and light headedness and tingling in fingers and toes. I posted another post that I am going to my surgeon WED and was hoping he can push up my cardiologist appt. Also wanted advice on how to ask why aren't the drs. collaborating??? I thought that was the point of Mayo. Love my vascular surgeon, so I am researching and making a list of questions for him. I am afraid though they just don't have answers. Hope you are doing better!

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Kari Ulrich, Alumna Mentor | @kariulrich | Jan 29, 2018
In reply to @kariulrich "@ruudolpho Cleveland Clinic has an amazing vascular clinic, I have had the opportunity to follow a..." + (show)
@kariulrich

@ruudolpho Cleveland Clinic has an amazing vascular clinic, I have had the opportunity to follow a patient through their appointments many years ago and I have to say they did a tremendous job in caring for this patient. I am happy to hear the Lyrica has given you some relief, and the ability to sleep at night. I do think not sleeping contributes to the pain. Have you noticed any side effects from the Lyrica? May I ask if you have lost any additional weight? I just posted several links on a response to @jmmb about pharmacogenetic testing, I will post them here also. I am sure Cleveland Clinic has this type of testing, for me it was helpful to know how my body metabolizes meds and which meds are better suited for me. It is so time intensive and not much fun going through different meds to see which ones work. This is the company that did my testing at Mayo, you do not need to have it done through Mayo, but you do need a doctor to order it: https://oneome.com also this explains what testing can help with: http://mayoresearch.mayo.edu/center-for-individualized-medicine/drug-gene-testing.asp It is rather complicated and I found it helpful to go through the individualized medicine department. I am very interested to hear what you think about medical cannabis! I have never had vitamin and minerals checked, that is very smart thing for all MALS patients! I appreciate you sharing that, I would think as our bodies are so malnourished this would be helpful in getting out health and well-being back on track. It is good to hear from you Lou!

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Do you think they gave you Toradol? That is an anti-inflammatory given for pain.

REPLY
jmmb | @jmmb | Jan 29, 2018
In reply to @jmmb "Hi @kariulrich and everyone else who knows a little about my history. I am hoping someone..." + (show)
@jmmb

Hi @kariulrich and everyone else who knows a little about my history. I am hoping someone can give me some guidance/advice on how to handle, or what to do on something. I thought going to Mayo, all the different drs. were suppose to meet and discuss your individual case. Mine don't. I love my vascular surgeon, I am not to happy with the GI dept. I have a 'fellow' and my vascular surgeon said I should ask for the attending dr instead. He is not happy with that dept either. Then my primary wants me to see a cardiologist. she also thought I could maybe have POTS, like you had mentioned Kari. I have the light headedness, tingling in feet and hands, and low blood pressure besides the constant fatigue. I can't get in to the cardiologist at Mayo until end of May, so maybe my surgeon can do something on that. I don't want to be disrespectful or hurt feelings, but I need answers and want to know why aren't drs talking to each other. I feel like I am the one to do the research and bring the information, and then I feel like they may think I am 'looking for something wrong' or something. If tests are ok then I am okay, well not if I don't feel right. Anyway, I am frustrated and just afraid when I go next week to the follow up surgeon visit for imaging from the balloon in celiac artery in Oct. I am not going to ask what I need and get any answers and leave in pain with nothing new. Believe me, I don't want anything wrong or any procedure, but some answers or something, you know what I mean.....
Tired of being in pain, and tired all the time and feel like I find so many connecting things, but why don't they you know. ???
Oh well, Kari I hope you are doing better on the Cymbalta. I am doing the pharmalogoical testing. My dr. just got the kit in, but since I have moved, it takes me 1 1/2 hrs to get to her, so not sure when I will get there again. She is awesome and I don't want to loose her....
Well if anyone has any advice or has felt this way, please let me know. Thanks

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Thank you @kanaazpereira . I just don't like to cause any problems. I don't want anyone to get 'in trouble' if you know what I mean. I will call and ask about the collaboration part though. Like I have said, I do love my vascular surgeon. Maybe I can get another opinion from the GI dept. and that would make me feel better.
Thanks again.

REPLY
Kanaaz Pereira, Connect Moderator | @kanaazpereira | Jan 29, 2018
In reply to @jmmb "Hi @kariulrich and everyone else who knows a little about my history. I am hoping someone..." + (show)
@jmmb

Hi @kariulrich and everyone else who knows a little about my history. I am hoping someone can give me some guidance/advice on how to handle, or what to do on something. I thought going to Mayo, all the different drs. were suppose to meet and discuss your individual case. Mine don't. I love my vascular surgeon, I am not to happy with the GI dept. I have a 'fellow' and my vascular surgeon said I should ask for the attending dr instead. He is not happy with that dept either. Then my primary wants me to see a cardiologist. she also thought I could maybe have POTS, like you had mentioned Kari. I have the light headedness, tingling in feet and hands, and low blood pressure besides the constant fatigue. I can't get in to the cardiologist at Mayo until end of May, so maybe my surgeon can do something on that. I don't want to be disrespectful or hurt feelings, but I need answers and want to know why aren't drs talking to each other. I feel like I am the one to do the research and bring the information, and then I feel like they may think I am 'looking for something wrong' or something. If tests are ok then I am okay, well not if I don't feel right. Anyway, I am frustrated and just afraid when I go next week to the follow up surgeon visit for imaging from the balloon in celiac artery in Oct. I am not going to ask what I need and get any answers and leave in pain with nothing new. Believe me, I don't want anything wrong or any procedure, but some answers or something, you know what I mean.....
Tired of being in pain, and tired all the time and feel like I find so many connecting things, but why don't they you know. ???
Oh well, Kari I hope you are doing better on the Cymbalta. I am doing the pharmalogoical testing. My dr. just got the kit in, but since I have moved, it takes me 1 1/2 hrs to get to her, so not sure when I will get there again. She is awesome and I don't want to loose her....
Well if anyone has any advice or has felt this way, please let me know. Thanks

Jump to this post

Thank you for sharing some very wise insight, @joant10. I sincerely believe that most doctors want to do a good job and help their patients as best they can, and we can maximize their (doctors') ability to help by also taking responsibility for our own care.
There is a saying, often quoted in medical school: "A patient's body frequently fails to read the textbook."

@joant10, we're so glad you've joined this discussion; may I ask what brings you to this group?

REPLY
Kanaaz Pereira, Connect Moderator | @kanaazpereira | Jan 29, 2018
In reply to @jmmb "Hi @kariulrich and everyone else who knows a little about my history. I am hoping someone..." + (show)
@jmmb

Hi @kariulrich and everyone else who knows a little about my history. I am hoping someone can give me some guidance/advice on how to handle, or what to do on something. I thought going to Mayo, all the different drs. were suppose to meet and discuss your individual case. Mine don't. I love my vascular surgeon, I am not to happy with the GI dept. I have a 'fellow' and my vascular surgeon said I should ask for the attending dr instead. He is not happy with that dept either. Then my primary wants me to see a cardiologist. she also thought I could maybe have POTS, like you had mentioned Kari. I have the light headedness, tingling in feet and hands, and low blood pressure besides the constant fatigue. I can't get in to the cardiologist at Mayo until end of May, so maybe my surgeon can do something on that. I don't want to be disrespectful or hurt feelings, but I need answers and want to know why aren't drs talking to each other. I feel like I am the one to do the research and bring the information, and then I feel like they may think I am 'looking for something wrong' or something. If tests are ok then I am okay, well not if I don't feel right. Anyway, I am frustrated and just afraid when I go next week to the follow up surgeon visit for imaging from the balloon in celiac artery in Oct. I am not going to ask what I need and get any answers and leave in pain with nothing new. Believe me, I don't want anything wrong or any procedure, but some answers or something, you know what I mean.....
Tired of being in pain, and tired all the time and feel like I find so many connecting things, but why don't they you know. ???
Oh well, Kari I hope you are doing better on the Cymbalta. I am doing the pharmalogoical testing. My dr. just got the kit in, but since I have moved, it takes me 1 1/2 hrs to get to her, so not sure when I will get there again. She is awesome and I don't want to loose her....
Well if anyone has any advice or has felt this way, please let me know. Thanks

Jump to this post

Hi @jmmb,

I’m so sorry to hear about your experience with the GI department. Please be assured that Mayo Clinic would want you to feel comfortable and confident about your care and your time at Mayo. I’d sincerely encourage you to call the Office of Patient Experience, and speak to someone about your concerns:

Office of Patient Experience
Mayo Building, lobby level
8 a.m. to 5 p.m., Monday–Friday
507-284-4988

Staff are available to discuss comments or concerns you may have regarding your medical care. Your experience certainly sounds like something Mayo Clinic would want to act upon. Let me know if I can help.

REPLY
jmmb | @jmmb | Jan 29, 2018

Wow, I was hoping that maybe my experience was just a fluke. I'm sorry you have had that also. That seems to be the case with my GI dr. However my vascular surgeon is wonderful and really takes time to talk and explain things. Thanks for your input.

REPLY
jmmb | @jmmb | Jan 29, 2018
In reply to @jmmb "Hi @kariulrich and everyone else who knows a little about my history. I am hoping someone..." + (show)
@jmmb

Hi @kariulrich and everyone else who knows a little about my history. I am hoping someone can give me some guidance/advice on how to handle, or what to do on something. I thought going to Mayo, all the different drs. were suppose to meet and discuss your individual case. Mine don't. I love my vascular surgeon, I am not to happy with the GI dept. I have a 'fellow' and my vascular surgeon said I should ask for the attending dr instead. He is not happy with that dept either. Then my primary wants me to see a cardiologist. she also thought I could maybe have POTS, like you had mentioned Kari. I have the light headedness, tingling in feet and hands, and low blood pressure besides the constant fatigue. I can't get in to the cardiologist at Mayo until end of May, so maybe my surgeon can do something on that. I don't want to be disrespectful or hurt feelings, but I need answers and want to know why aren't drs talking to each other. I feel like I am the one to do the research and bring the information, and then I feel like they may think I am 'looking for something wrong' or something. If tests are ok then I am okay, well not if I don't feel right. Anyway, I am frustrated and just afraid when I go next week to the follow up surgeon visit for imaging from the balloon in celiac artery in Oct. I am not going to ask what I need and get any answers and leave in pain with nothing new. Believe me, I don't want anything wrong or any procedure, but some answers or something, you know what I mean.....
Tired of being in pain, and tired all the time and feel like I find so many connecting things, but why don't they you know. ???
Oh well, Kari I hope you are doing better on the Cymbalta. I am doing the pharmalogoical testing. My dr. just got the kit in, but since I have moved, it takes me 1 1/2 hrs to get to her, so not sure when I will get there again. She is awesome and I don't want to loose her....
Well if anyone has any advice or has felt this way, please let me know. Thanks

Jump to this post

@joant10 I agree negative tests don't mean you feel good and everything is ok. This is when I start to feel like some of the drs. think I am looking for something to be wrong. My GI dr. said when I got to Mayo, "Well you have been to 3 GI drs already so why are you here and what do you think we can do?" Can you believe that? My last GI dr. sent the referral for follow up with SIBO since she didn't have the capability for testing and follow up. Plus I had 3 positive sibo tests over 2 years. I took their test, different then the others I have taken and she said, "You don't have SIBO" I was like how can 3 other drs and tests from 3 different labs and hospitals be wrong. She said I could of just got better. This is what is so frustrating. My vascular surgeon however is wonderful. Well good luck to you and I try to stay optimistic so I hope you continue to also.

REPLY
joant10 | @joant10 | Jan 29, 2018
In reply to @jmmb "Hi @kariulrich and everyone else who knows a little about my history. I am hoping someone..." + (show)
@jmmb

Hi @kariulrich and everyone else who knows a little about my history. I am hoping someone can give me some guidance/advice on how to handle, or what to do on something. I thought going to Mayo, all the different drs. were suppose to meet and discuss your individual case. Mine don't. I love my vascular surgeon, I am not to happy with the GI dept. I have a 'fellow' and my vascular surgeon said I should ask for the attending dr instead. He is not happy with that dept either. Then my primary wants me to see a cardiologist. she also thought I could maybe have POTS, like you had mentioned Kari. I have the light headedness, tingling in feet and hands, and low blood pressure besides the constant fatigue. I can't get in to the cardiologist at Mayo until end of May, so maybe my surgeon can do something on that. I don't want to be disrespectful or hurt feelings, but I need answers and want to know why aren't drs talking to each other. I feel like I am the one to do the research and bring the information, and then I feel like they may think I am 'looking for something wrong' or something. If tests are ok then I am okay, well not if I don't feel right. Anyway, I am frustrated and just afraid when I go next week to the follow up surgeon visit for imaging from the balloon in celiac artery in Oct. I am not going to ask what I need and get any answers and leave in pain with nothing new. Believe me, I don't want anything wrong or any procedure, but some answers or something, you know what I mean.....
Tired of being in pain, and tired all the time and feel like I find so many connecting things, but why don't they you know. ???
Oh well, Kari I hope you are doing better on the Cymbalta. I am doing the pharmalogoical testing. My dr. just got the kit in, but since I have moved, it takes me 1 1/2 hrs to get to her, so not sure when I will get there again. She is awesome and I don't want to loose her....
Well if anyone has any advice or has felt this way, please let me know. Thanks

Jump to this post

kariulrich, I can relate to your situation, with low BP, tingling hands, short-breath, fatigue,muscle pain, and no answers from Drs. and tests, and you don't know if meds are the cause or the cure of it! I have had to ask for lower doses (I am elderly) but they are not happy about that.
Negative tests don't mean you suddenly feel good. I think most Drs try, but the body is so complex that so many things can go out of whack and not be traced. We have to keep being detectives on our own, and stay optimistic -- one of my problems, I tend to start worrying and then get anxious, and that doesn't help. joan t10.

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oldkarl | @oldkarl | Jan 29, 2018

@jmmb Hi, friend, don't waste your time waiting for your doctors at Mayo to talk with each other. They won't, and most of them will not talk with you, either. You do have to do your own research and tell the docs about it. The docs are there mainly to order the lab tests you think you need, and take the credit if something is learned.

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