1. < Digestive Health
Profile picture for Kari Ulrich, Alumna Mentor

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?

Interested in more discussions like this? Go to the Digestive Health Support Group.

Profile picture for jmmb
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)
Profile picture for Kari Ulrich, Alumna Mentor @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!

Jump to this post

Right now Kari I only have the Vascular surgeon and the GI fellow. Last appointment the vascular surgeon said he would try and talk to the attending dr. in the GI dept. He also said he was not to fond of the dept. (kind of on the side). I had sent messages through the portal to ask what happened and never heard back. Last week I sent him a message and he called me the next day, so I am not sure what happened with the other messages, but I will definitely bring that up Wed. Once I get a cardiologist involved I for sure expect them to collaborate. I will discuss this with the surgeon. Do you have a primary dr. at Mayo that oversees it all? My primary is wonderful, but she is not with Mayo so it is hard for her. Thanks

REPLY
Profile picture for Kari Ulrich, Alumna Mentor
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)
Profile picture for Kari Ulrich, Alumna Mentor @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!

Jump to this post

They should be collaborating with one another, make sure you let them know you expect that. Sometimes they do talk to one another before and after appointments through a different messaging system than the portal. Always let them know that it is important to you that they touch base with your team of doctors. I ask at the end of my appointment for them to update my team if I feel that it is important that my entire team knows. Many times my specialist will look at notes prior to me following up.

REPLY
Profile picture for jmmb
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)
Profile picture for jmmb @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 @kariulrich. by the way my name is Jill. I just got done joining facebook and the MALS pals. I never had a facebook page because of being a teacher and all the kids kept asking me if I had one and wanting to write me. I didn't want any issues, take any chances , with the way the world is today unfortunately, so I would just give them my school email. I miss them....Anyway, I feel so old not knowing how to navigate the site!!!! I totally understand what you are saying. I guess deep down I was hoping, wow Mayo, I'll go there get answers and be fixed!! Yeah right!! At least I understand more about MALS that is for sure, but mostly from you and others on the site, and of course research. This site has been wonderful in that I know I am not alone, or crazy or a hypochondriac. I just feel that the surgeon is really focused only on the vascular part, even though it does effect the GI stuff so they should work together. I was thinking of asking for another GI dr. there for a second opinion. I am in Arizona and I couldn't make a trip to Rochester, but I have heard their GI is the best....Well thank you again for your advice and support. I will see what happens on Wed.'s appt.

REPLY
Profile picture for Kari Ulrich, Alumna Mentor
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)
Profile picture for jmmb @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

@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.

REPLY
Profile picture for jmmb
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)
Profile picture for Kari Ulrich, Alumna Mentor @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!

Jump to this post

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!

REPLY
Profile picture for Kari Ulrich, Alumna Mentor
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)
Profile picture for Kari Ulrich, Alumna Mentor @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!

Jump to this post

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

REPLY
Profile picture for jmmb
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)
Profile picture for jmmb @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 @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
Profile picture for Kanaaz Pereira, Connect Moderator
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)
Profile picture for jmmb @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
Profile picture for Kanaaz Pereira, Connect Moderator
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)
Profile picture for jmmb @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
Profile picture for jmmb
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
View MoreView Less
Please sign in or register to post a reply.