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?

@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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I have a question about the Tramadol. I think when I was in er yesterday, they gave me Tramadol but it was muscle relaxer type pain reliever. Is that correct? I could have heard the name wrong. It sounded familiar to me and when I just read this I thought it could be this????

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Tramadol is for moderate to severe pain. Also called Ultram. There are many muscle relaxants out there and one with a T (Tabradol). Not an anti-depressant like used in chronic pain but can act chemically like one and help with the pain and spasms. I would ask and find out. Tramadol is used in the ER but is a pain medicine not muscle relaxant. They could have given it to you if you had pain but I would ask, even your family doctor as I would hope he gets your records.

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@jlfisher56

Tramadol is for moderate to severe pain. Also called Ultram. There are many muscle relaxants out there and one with a T (Tabradol). Not an anti-depressant like used in chronic pain but can act chemically like one and help with the pain and spasms. I would ask and find out. Tramadol is used in the ER but is a pain medicine not muscle relaxant. They could have given it to you if you had pain but I would ask, even your family doctor as I would hope he gets your records.

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Interesting, thank you for your input. I will ask.

Liked by jlfisher56

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jmmb I found a Dr that I have occasionally watched. Last night he spoke on fibromyalgia (I have but not bad anymore). If you pull up his YouTube video Dr Dan Claw the head of Chronic Pain Fatigue Center of the University of Michigan, he addressed medication and brain chemicals.He is very informative but “never” felt any pain in his life and I am not 100% agreeable about what he states. Anyway, Tramadol is like I stated but he said, he dislikes opioids but uses Tramadol in the fact it acts as a weak anti-depressant like Savella/Cymbalta? He also stated it works on gamma hydroxybutyrate receptors (?) and the other ones work on serotonin and norepinephrine. A few years ago the FDA was going to take synthetic Tramadol off market because it was addicting and has side effects. It still is but you should research it. I don’t know when they decided to use as an anti-depressant but as I stated he is against opioids but not Tramadol??? Strange. A friend of mine took it for pain at that time and had relief (I never did) and was also told non- addicting but IS. Was afraid when was going to be taken off market but wasn’t, then her dosage had to be lowered. It is the side-effects of opioids he does not like and not effective in “brain” pain. That is why research is so important. Hope you are getting the assistance you need and are feeling much better. I still would question your doctor what they used. Don’t know any doctors using it around my area or any medical associates I know

Liked by jmmb

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@jlfisher56

jmmb I found a Dr that I have occasionally watched. Last night he spoke on fibromyalgia (I have but not bad anymore). If you pull up his YouTube video Dr Dan Claw the head of Chronic Pain Fatigue Center of the University of Michigan, he addressed medication and brain chemicals.He is very informative but “never” felt any pain in his life and I am not 100% agreeable about what he states. Anyway, Tramadol is like I stated but he said, he dislikes opioids but uses Tramadol in the fact it acts as a weak anti-depressant like Savella/Cymbalta? He also stated it works on gamma hydroxybutyrate receptors (?) and the other ones work on serotonin and norepinephrine. A few years ago the FDA was going to take synthetic Tramadol off market because it was addicting and has side effects. It still is but you should research it. I don’t know when they decided to use as an anti-depressant but as I stated he is against opioids but not Tramadol??? Strange. A friend of mine took it for pain at that time and had relief (I never did) and was also told non- addicting but IS. Was afraid when was going to be taken off market but wasn’t, then her dosage had to be lowered. It is the side-effects of opioids he does not like and not effective in “brain” pain. That is why research is so important. Hope you are getting the assistance you need and are feeling much better. I still would question your doctor what they used. Don’t know any doctors using it around my area or any medical associates I know

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@jlfisher56 thank you so much for this information. I am going to definitely look into this. I am taking Cymbalta, but have been for 20 years and think I have become ‘immune’ to it. I was thinking of switching to savella. I just get overwhelmed because I feel I have so many things going on, what is related to what and don’t know what dr to ask about what. My primary is great, but she can only do so much. I have an appointment with my vascular surgeon on the 31st. I guess I can start there. I am going to watch the video you suggested. Thanks again for your help. This site has been wonderful for me because of people like you and @kariulrich and others, so thank you all.

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@jlfisher56

jmmb I found a Dr that I have occasionally watched. Last night he spoke on fibromyalgia (I have but not bad anymore). If you pull up his YouTube video Dr Dan Claw the head of Chronic Pain Fatigue Center of the University of Michigan, he addressed medication and brain chemicals.He is very informative but “never” felt any pain in his life and I am not 100% agreeable about what he states. Anyway, Tramadol is like I stated but he said, he dislikes opioids but uses Tramadol in the fact it acts as a weak anti-depressant like Savella/Cymbalta? He also stated it works on gamma hydroxybutyrate receptors (?) and the other ones work on serotonin and norepinephrine. A few years ago the FDA was going to take synthetic Tramadol off market because it was addicting and has side effects. It still is but you should research it. I don’t know when they decided to use as an anti-depressant but as I stated he is against opioids but not Tramadol??? Strange. A friend of mine took it for pain at that time and had relief (I never did) and was also told non- addicting but IS. Was afraid when was going to be taken off market but wasn’t, then her dosage had to be lowered. It is the side-effects of opioids he does not like and not effective in “brain” pain. That is why research is so important. Hope you are getting the assistance you need and are feeling much better. I still would question your doctor what they used. Don’t know any doctors using it around my area or any medical associates I know

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Hi, I am looking up his you tube video and there are many of them. Is there one in particular you recommend or saw, or just any in general. They all say chronic pain and fibromyalgia……

Liked by jlfisher56

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A great doctor I also watched who really explains pain and especially fibromyalgia is Dr Andrew Gross the Director of the mini Medical School UCSF. The web address is http://www.osher.ucsf.edu and he has a wonderful YouTube video on fibromyalgia from 2011 and even stated people could email him at andrew.gross@ucsf.edu. The way he explains how pain works is easy for most people without any medical background to understand and why certain drug classes work for certain pain. A very compassionate doctor! Hope this is finding you better.

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Dr Dan Claw from University Michigan…good video is the first one I spoke about but like I stated…he never felt pain…even had a headache! He has grey-white hair. Chronic Pain. Is it all in their heads? He has a few of them.

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@jlfisher56

Dr Dan Claw from University Michigan…good video is the first one I spoke about but like I stated…he never felt pain…even had a headache! He has grey-white hair. Chronic Pain. Is it all in their heads? He has a few of them.

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Thanks again for the info. I did watch Dr. Claw you tube video. There were a few but I did watch the 1 hour plus: Chronic Pain Is it all in their heads? It made a lot of sense. It seems related to Visceral Hypersensitivity. I believe that is the correct term. Where pain becomes even more painful due to the hypersensitivity. I will look at the other site as well. Thanks again.

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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 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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@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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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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@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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@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.

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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.

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@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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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.

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