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?

@lexie9409

Looking for some input. I have had severe diarrhea for several years becoming worse over the past year. Started strictly as diarrhea but then turned into stomach pain, nausea, fatigue, as well as the diarrhea. My symptoms vary and recently I have been worked up for MALS. I’m the past I have had colonoscopy/endoscopy with biopsies, ruled out chrons, colitis, microcolitis, diverticulitis, etc. I have tried medications such as dicyclomine, Imodium, colestipol, protonix, amitryptiline, and lexapro (sorry if the spelling is incorrect). I also had my gall bladder out in March of this year for the liver pain and nausea without relief. I have tried diet modification and my pain/diarrhea worsens with exercise.
On a normal basis I have pain under my ribs on the right side (like liver pain) and down the right side of my stomach. I have had a few bouts where the pain has been severe and I was unable to eat. The last bout losing 9-10 lbs. I have in the last two months had two weeks of feeling almost normal with normal stool and no pain with eating. This is always short lived and the symptoms return. I had an ultrasound which showed stenosis of the celiac artery and just had a CT angio which showed mild celiac artery stenosis with a hooked shaped appearance of the celiac artery. I am awaiting speaking with the physician from here but want to know if anyone else has similar issues. Can I have the back and forth with my symptoms if it is MALS? And has anyone else had issues with severe diarrhea (6-10 Times a day). This is taking over my life and I am beyond frustrated.

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I also, had the same slew of tests done. You described, to a T, ( right upper side directly under the rib, liver pain) where my sharp pain has been over the last two years. Yes, my symptoms would come and go. At the beginning, I almost wondered if it had to do with hormone fluctuation as I had read about endometriosis attaching to other organs. But, MALS was the culprit. I don’t know if that makes you feel better or not. I hope it helps. Your symptoms of the pain, nausea, and fatigue are exactly what I have been dealing with as well. I had my surgery, to release the ligament, and to cut the diaphragm (then repair it). As of right now, they don’t think a stent is necessary, but I am only 2 1/2 weeks out from surgery. @kariulrich helped me, in her earlier posts, of saying how important it was to eat very small portions, and very slowly after the surgery. I feel like I am finally on the recovery side. That was a long answer, sorry! But, I am hoping to let you know that you aren’t alone, in feeling so frustrated and like these symptoms are taking over your life. There is hope in getting better!!

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@lexie9409

Looking for some input. I have had severe diarrhea for several years becoming worse over the past year. Started strictly as diarrhea but then turned into stomach pain, nausea, fatigue, as well as the diarrhea. My symptoms vary and recently I have been worked up for MALS. I’m the past I have had colonoscopy/endoscopy with biopsies, ruled out chrons, colitis, microcolitis, diverticulitis, etc. I have tried medications such as dicyclomine, Imodium, colestipol, protonix, amitryptiline, and lexapro (sorry if the spelling is incorrect). I also had my gall bladder out in March of this year for the liver pain and nausea without relief. I have tried diet modification and my pain/diarrhea worsens with exercise.
On a normal basis I have pain under my ribs on the right side (like liver pain) and down the right side of my stomach. I have had a few bouts where the pain has been severe and I was unable to eat. The last bout losing 9-10 lbs. I have in the last two months had two weeks of feeling almost normal with normal stool and no pain with eating. This is always short lived and the symptoms return. I had an ultrasound which showed stenosis of the celiac artery and just had a CT angio which showed mild celiac artery stenosis with a hooked shaped appearance of the celiac artery. I am awaiting speaking with the physician from here but want to know if anyone else has similar issues. Can I have the back and forth with my symptoms if it is MALS? And has anyone else had issues with severe diarrhea (6-10 Times a day). This is taking over my life and I am beyond frustrated.

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@lexie9409 welcome to the MALS family, your experience is so similar to many of us here! MALS is such a rollercoaster with its symptoms. I have good days and bad days. I have had the same diarhea issues you have described and they make life challenging to say the least. I have not found anything that helps the bowel issues as far as medication, I do take gummy fibers, it helps a little but I have not found anything that helps completely. When my pain is bad I have been on tramadol which has a side effect of constipation… however for me it helps settle things down. It is a difficult issue because the symptoms immobilize you for hours! It does take over your life, you absolutely correct about that. It is a difficult cycle to manage symptoms and it affects your quality of life. From pain with eating, malnutrition and fatigue I find I break down and cry in frustration. There is so much more that needs to be done for patients with MALS, from being diagnosed in a timely manner to support after. For many of us even after surgery this become a chronic challenging disease. With all that said, I know it is hard to manage but there is a awesome group of people here to support you and listen. I have been dealing with MALS for over a decade and I seen a spectrum of amazing results to those who continue to fight. We are all in this together!

Liked by lexie9409

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@lexie9409

Looking for some input. I have had severe diarrhea for several years becoming worse over the past year. Started strictly as diarrhea but then turned into stomach pain, nausea, fatigue, as well as the diarrhea. My symptoms vary and recently I have been worked up for MALS. I’m the past I have had colonoscopy/endoscopy with biopsies, ruled out chrons, colitis, microcolitis, diverticulitis, etc. I have tried medications such as dicyclomine, Imodium, colestipol, protonix, amitryptiline, and lexapro (sorry if the spelling is incorrect). I also had my gall bladder out in March of this year for the liver pain and nausea without relief. I have tried diet modification and my pain/diarrhea worsens with exercise.
On a normal basis I have pain under my ribs on the right side (like liver pain) and down the right side of my stomach. I have had a few bouts where the pain has been severe and I was unable to eat. The last bout losing 9-10 lbs. I have in the last two months had two weeks of feeling almost normal with normal stool and no pain with eating. This is always short lived and the symptoms return. I had an ultrasound which showed stenosis of the celiac artery and just had a CT angio which showed mild celiac artery stenosis with a hooked shaped appearance of the celiac artery. I am awaiting speaking with the physician from here but want to know if anyone else has similar issues. Can I have the back and forth with my symptoms if it is MALS? And has anyone else had issues with severe diarrhea (6-10 Times a day). This is taking over my life and I am beyond frustrated.

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@lexie9409 The isolation is real, from avoiding to go to the grocery store (That is just too much pressure for us MALS peeps) to not going out with friends and family. Eating is so social and what many physicians fail to understand is that when you have pain such as you have described you avoid social interactions just to lessen the pain plus many of us need to rest and lie down to cope with an attack.

Liked by blessedgma

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@jmmb @coffeelatte @worriedmom18 @joyful1 @atjmoney @bpayne @cornishrex @carolina58 @azbluebird @sarah1317 @jamorris9 @bree11 @lmtuska @evrose23 @lisa01 @malsman @artistgma @evileye00 @ruudolpho @blessedgma @lexie9409  I want to thank each of you for validating the reality of MALS. With the holidays approaching it can be challenging to navigate eating, socializing and getting through all the extra tasks. Any advice? How do you get through the holidays? Also I have another question, what can or should be done by health care providers to help support MALS patients?

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@lexie9409

Looking for some input. I have had severe diarrhea for several years becoming worse over the past year. Started strictly as diarrhea but then turned into stomach pain, nausea, fatigue, as well as the diarrhea. My symptoms vary and recently I have been worked up for MALS. I’m the past I have had colonoscopy/endoscopy with biopsies, ruled out chrons, colitis, microcolitis, diverticulitis, etc. I have tried medications such as dicyclomine, Imodium, colestipol, protonix, amitryptiline, and lexapro (sorry if the spelling is incorrect). I also had my gall bladder out in March of this year for the liver pain and nausea without relief. I have tried diet modification and my pain/diarrhea worsens with exercise.
On a normal basis I have pain under my ribs on the right side (like liver pain) and down the right side of my stomach. I have had a few bouts where the pain has been severe and I was unable to eat. The last bout losing 9-10 lbs. I have in the last two months had two weeks of feeling almost normal with normal stool and no pain with eating. This is always short lived and the symptoms return. I had an ultrasound which showed stenosis of the celiac artery and just had a CT angio which showed mild celiac artery stenosis with a hooked shaped appearance of the celiac artery. I am awaiting speaking with the physician from here but want to know if anyone else has similar issues. Can I have the back and forth with my symptoms if it is MALS? And has anyone else had issues with severe diarrhea (6-10 Times a day). This is taking over my life and I am beyond frustrated.

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Thank you and @blessedgma. I haven’t officially been given the MALS diagnosis but it sounds like this may be it. The worst part is my job recently joined with a larger hospital and if I don’t stay in network the coverage will be awful. I’m almost certain that there will not be any physicians in my area who would be experienced in this or willing to do the surgery. I’m waiting on those answers as well but can’t help but feel trapped because even with a diagnosis there may not be much I can do in the short term. I feel much better knowing that others have the off and on with this because that had me feeling like I was crazy. One min I’m ok and the next I’m done for it. Thank you for your advice and information!! Can’t tell you how much more confident I feel about it being he issue!

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@kariulrich

@jmmb @coffeelatte @worriedmom18 @joyful1 @atjmoney @bpayne @cornishrex @carolina58 @azbluebird @sarah1317 @jamorris9 @bree11 @lmtuska @evrose23 @lisa01 @malsman @artistgma @evileye00 @ruudolpho @blessedgma @lexie9409  I want to thank each of you for validating the reality of MALS. With the holidays approaching it can be challenging to navigate eating, socializing and getting through all the extra tasks. Any advice? How do you get through the holidays? Also I have another question, what can or should be done by health care providers to help support MALS patients?

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This is really a frustrating disease. I go back and forth wondering is it more than MALS, or just MALS causing all of these symptoms. Like all of you I have been through so many tests. I had an open surgery in Feb. 2014, I stents put in Sept. 2015. My diaphragm was crushing the celiac and superior mesenteric artery. I am still struggling. This past Oct. I had an angio and a balloon done to the celiac artery. The pain got much better, however it is returning. It is frustrating. I am tired all the time, but I was also diagnosed with Chronic Fatigue around 1993 so is it that or mals….Bowel issues , nothing has helped. I don’t know what it will be one day from the next.
What I do know is that like many of us have said, is that you must find an experienced surgeon for this disease. I know that is difficult. I am very fortunate to have a wonderful surgeon at Mayo in Phoenix. This site has been wonderful in helping me and I hope it can help you to as well.

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@kariulrich

@jmmb @coffeelatte @worriedmom18 @joyful1 @atjmoney @bpayne @cornishrex @carolina58 @azbluebird @sarah1317 @jamorris9 @bree11 @lmtuska @evrose23 @lisa01 @malsman @artistgma @evileye00 @ruudolpho @blessedgma @lexie9409  I want to thank each of you for validating the reality of MALS. With the holidays approaching it can be challenging to navigate eating, socializing and getting through all the extra tasks. Any advice? How do you get through the holidays? Also I have another question, what can or should be done by health care providers to help support MALS patients?

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May I ask what your first symptoms of this disease was. I have many stomach issues and I’m afraid may have more because nothing seems to be resolved. I have Barrett’s esophagus ulcers colon polyps diverticulitis silent Gerd. Only the ulcer has healed. I have IBS with constipatiin and diarrhea. I do hope you are getting better.

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@kariulrich

@jmmb @coffeelatte @worriedmom18 @joyful1 @atjmoney @bpayne @cornishrex @carolina58 @azbluebird @sarah1317 @jamorris9 @bree11 @lmtuska @evrose23 @lisa01 @malsman @artistgma @evileye00 @ruudolpho @blessedgma @lexie9409  I want to thank each of you for validating the reality of MALS. With the holidays approaching it can be challenging to navigate eating, socializing and getting through all the extra tasks. Any advice? How do you get through the holidays? Also I have another question, what can or should be done by health care providers to help support MALS patients?

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Thank you, my biggest question is are there ways to manage without Surgery? I do not love the idea of Surgery (not that anyone would) and am worried that it may not help in the first place.

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@kariulrich

@jmmb @coffeelatte @worriedmom18 @joyful1 @atjmoney @bpayne @cornishrex @carolina58 @azbluebird @sarah1317 @jamorris9 @bree11 @lmtuska @evrose23 @lisa01 @malsman @artistgma @evileye00 @ruudolpho @blessedgma @lexie9409  I want to thank each of you for validating the reality of MALS. With the holidays approaching it can be challenging to navigate eating, socializing and getting through all the extra tasks. Any advice? How do you get through the holidays? Also I have another question, what can or should be done by health care providers to help support MALS patients?

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Thank you. Started strictly with chronic diarrhea. I had colonoscopy/endoscopy with biopsies and they found nothing. I had several lab studies, CT’s, stool studies and nothing. In the mean time I began having nausea and pain in my liver on top of what I chalked up to be diarrhea pains. They worked me up for gall bladder issues and found it was over active so I had it out. From there I tried bite acid binding medication as they felt I had too much bile in my digestive tract which caused a laxative effect. This helped for a short period of time. Having my gall bladder out did not change my symptoms. I had a bout of extreme pain in July and was unable to eat and spent much of my beach vacation suffering. One of the days I was stuck in bed. Same thing happened again in October. I thought I had an ulcer as I could not explain the pain and tried Zantac and was eventually placed on Protonix. During times when the pain is not as severe I am still suffering with significant painb in my stomach and I have spent 1/2 of some of my days at work in the bathroom crying because of the stomach pain and diarrhea. I am having a hard time taking all of these medications and it does not seem to help but then when I don’t take them I fear I’ll be looked at like I’m not trying to do what the doctor says or whatnot. I hope you’re getting some relief from your issues as wel. Frustration is so high for me. It makes me feel like I’m crazy as no one understands this issue. People at work keep barking it’s my diet and whatever but even my husband agrees that diet makes no difference for me. Ughh!!

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@lexie I know exactly what you mean when you say ‘ not doing what the dr says…’ You know your body. Sometimes when I try to explain I have done this or that already or something and it didn’t work, they look at me like ; well why did you come here if you don’t want my help kind of attitude. You need to find a dr that listens to you and puts your input into the plan for your health. Don’t know if I said that right, but do you know what I mean? I have a wonderful primary care dr. (I drive 1 1/2 hrs since I moved every 6 weeks to see her) She has always said you know your body. No one else can tell you what you are feeling. A good dr should be open to listen to anything (ideas/suggestions/readings) you have. She has also told me she is grateful since she has even learned some things from me to help with other patients. Now I am sure that is symptoms to look out for, and a lot of info on SIBO really. Not many drs know about that. My point is, the dr. needs to listen to you and what you have to say. If you are not comfortable, find another.
WIth that said, I’m not to crazy about my GI dr. at Mayo. My vascular surgeon is wonderful. I couldn’t be happier, unless I didn’t have this MALS : )
I was going to put out there if anyone from Arizona , Phoenix area knows of a good GI dr. to please let me know….It is really important to have a good relationship with your dr especially since we will be seeing them for a long time.
Just know you are not alone. That has helped me deal with this. I hope that can help you and anyone else reading this.

Liked by blessedgma

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@kariulrich

@jmmb @coffeelatte @worriedmom18 @joyful1 @atjmoney @bpayne @cornishrex @carolina58 @azbluebird @sarah1317 @jamorris9 @bree11 @lmtuska @evrose23 @lisa01 @malsman @artistgma @evileye00 @ruudolpho @blessedgma @lexie9409  I want to thank each of you for validating the reality of MALS. With the holidays approaching it can be challenging to navigate eating, socializing and getting through all the extra tasks. Any advice? How do you get through the holidays? Also I have another question, what can or should be done by health care providers to help support MALS patients?

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@kariulrich , I read your questions last night and knew I had to sleep on it.Like you said, it is so challenging, being social and eating through the holidays!! I’m sure you would all agree that it’s not even fun going out to eat with MALS. I really liked your advice of taking eating slowly and eating in small increments. I realize that there are so many scenarios regarding socializing and eating through the holidays, like, if your symptoms are acting up, or if you’re having a good day. We truly are at the mercy of our symptoms. I am looking forward to hearing what others say about this question. It’s a good one!
As far as the health care provider question: I am learning through this connect site and the Malspals on facebook, how often symptoms can recur. So, I am hoping that those docs who are dealing with MALS patients would be open to realizing that surgery isn’t a quick, complete fix to this very complicated issue. I had my last appt with my surgeon, who was wonderful, but I felt as though it was very final. I hope that if I am in need of help in the future, that she would not feel threatened that my symptoms returned.

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Has anyone with post surgical MALS symptoms tried medical marijuana for pain and as an aid to eating more?

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@ruudolpho

Has anyone with post surgical MALS symptoms tried medical marijuana for pain and as an aid to eating more?

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@ruudolpho It is so good to hear from you, you have been in my thoughts! How are you doing? Are you still loosing weight? How is your strength holding up? That is a great question about the use of medical marijuana and one I am very interested in hearing the answer. I have not tried medical marijuana and would be overjoyed to see some research done in this area for chronic MALS pain. I asked the same question a few months back on MALS PALS/ Facebook and several patients had tried it and found it helpful. I have not been brave enough to ask my physician about it, but it is something I have been considering for a while. Right now I am trying Cymbalta which has helped my mood, but not the pain. Here is a link of the discussion on MALS PALS: https://www.facebook.com/groups/105633382202/search/?query=medical%20marijuana

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@kariulrich

@jmmb @coffeelatte @worriedmom18 @joyful1 @atjmoney @bpayne @cornishrex @carolina58 @azbluebird @sarah1317 @jamorris9 @bree11 @lmtuska @evrose23 @lisa01 @malsman @artistgma @evileye00 @ruudolpho @blessedgma @lexie9409  I want to thank each of you for validating the reality of MALS. With the holidays approaching it can be challenging to navigate eating, socializing and getting through all the extra tasks. Any advice? How do you get through the holidays? Also I have another question, what can or should be done by health care providers to help support MALS patients?

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Hi @kariulrich and fellow Connect members,

Often, healthcare providers are unfamiliar with identifying and treating patients with rare diseases, but I just want you to know that by sharing your journeys on Connect, you have made an invaluable impact on raising awareness about MALS. There is power in sharing your stories because individual rare experiences help listeners to connect, but more importantly your insights help researchers, doctors further their support and understanding of MALS.

Another great resource is Rare Disease Day (Feb 28, 2018):
https://www.rarediseaseday.org/article/get-involved-organise-an-awareness-raising-activity

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I wanted to share this link with everyone! I am really excited to see that there is a new non-profit dedicated to compression syndromes: http://vascularawareness.org

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