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?

@jmmb

Hi @atjmoney. I feel for your daughter and your family. What did the laparoscopic surgery do? Was it to widen the artery? Was it like an angiogram where they go through her groin or arm? The amount of weight she has lost is concerning. Did they want to do an open surgery with her instead of the stent? Since she is so young, I would think the open one, but I don’t know all the facts. I had stents as well and that was not too bad. Small scar on inside of my upper arm. I did have a hematoma and have to have a second surgery that day, but that was me, so I stayed an extra day or two.
You are right to get a surgeon who has performed these types of surgery before. Do your research. Have they done the Doppler ultra sound to see how much it narrowed? I don’t know what advice to give since I don’t know her details and I wouldn’t want to say anything wrong, but feel free to ask me anything.
Good luck

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We were given two sets of facts ;one the surgeon said despite the very positive angiogram he wasn't very enthusiastic about the surgery working or helping my lovely daughter. She recently was told her gallbladder though not diseased isn't functioning properly with a score of 18.5 . So we are taking our daughter for a second opinion at another teaching hospital . It is an awful condition and I can't imagine how you function with the pain. Our beautiful daughter just graduated high school in May at the top of her class with college as a Math major weeks away. Now she deferred her admission and awaits a resolution so her life can be resume again. She is such severe pain. She has so much pain after she and eats so little not more than 800 calorie a day with great effort. Thank you for sharing your experiences and for your kindness means the world to a nervous /worried mom.

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So let me know if I am getting to personal, but if she had a positive angiogram (showing narrowing I assume) did they try to do anything while in there? When you say wasn’t enthusiastic about surgery working, did you also mean not enthusiastic about helping your daughter as well? If so drop him/her immediately. What did they say to do about gallbladder? With her in that much pain loosing that much weight it concerns me that this may be something that shouldn’t wait. I am not trying to get you scared, I am just curious with her being so young why didn’t surgeon think surgery would work?? Maybe because he is not experienced. When are you going for a second opinion? They can do a Doppler ultra sound before doing the angiogram to see how narrow the artery is. Which artery is effected? Maybe mine was more urgent because I had 2 out of the 3 arteries to the stomach not working.
When you say two sets of facts do you mean 1 the MALS and 2 the gallbladder by two different drs? Just seems confusing to me and I feel for you guys, especially your daughter. Is it you need a correct diagnosis? I understand putting your life on hold. Mine was for 3 years. Health wise it still is, but other things finally got better so that helps me deal with the health issues. She is to young to have to go through this. The positive is that she is young though and would have a better faster recovery, if that is any consolation. But again, I am not a dr. Just the weight loss and calorie intake is concerning. OH and I am a mom. My son had pyloric stenosis when he was 7 months old. 20 years ago it was an open surgery and a week in the hospital. Talk about worried….I was crazy……so I get it. Anything I can do to help just let me know.

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No worries. We will get her treatment expeditiously as possible. We have pending appointments with leaders in this area of medicine . The current surgeon just doesn’t have a lot faith in the MALS surgery so we feel it is essential to get feedback from others. He also only does the lap version unless on the table something goes wrong. She has a sluggish Gallbladder and a stenosis of abdominal artery above 80%. Thank you for your concern we will keep everyone posted and thank you for sharing your story it is very helpful.

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Hello,
My daughter had the ultrasound they determined the nerve was narrow and there was fibrous tissue around the nerve. The surgery was to remove the tissue in hopes of relieving the nerve. It was unsuccessful and we’re back at square 1. The next phase is the full surgery, I’m a little concerned about the healing process. She’s a college athlete and very anxious to get back on the court. Right now her eating has regressed less than 800 calories a day, not good. she’s starting to have pain with exercise, any suggestions on controlling the nausea and abdominal pain. I’m looking at cannabis and other alternative meds. Your thoughts?

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Wow! Sounds like my daughter except she isn’t an athlete. She is a straight A Math major who had to defer her semester to the profound health change. I am anxiously awaiting a second opinion. They wrote her a script for pain relief but she is afraid it will hurt so she just continues to suffer. If we have any luck with our other medical specialist inquiries ill post. My prayers and thoughts for you both!

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@worriedmom18

No worries. We will get her treatment expeditiously as possible. We have pending appointments with leaders in this area of medicine . The current surgeon just doesn’t have a lot faith in the MALS surgery so we feel it is essential to get feedback from others. He also only does the lap version unless on the table something goes wrong. She has a sluggish Gallbladder and a stenosis of abdominal artery above 80%. Thank you for your concern we will keep everyone posted and thank you for sharing your story it is very helpful.

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She also had a positive provocative messenteric angiogram with a positive mals diagnosis with stenosis of the celiac artery. I thought it would be helpful to share that to my above message . Thank you all again!

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Thank you for the insight my thoughts and prayers are with your family as well. I’m happy your daughter decided to defer school, I almost wished this happened in high school unfortunately it was her first semester in college:(. She’s managing it well, but I sometimes I feel powerless because we’re not in the same house, so I can’t help her manage it. She calls me daily so that helps. We have to stay strong and trust in God, the healer of all healers

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Welcome to Connect, @atjmoney,

I’m sorry to hear about your daughter, and glad that you’ve turned to this community for some support. I’m confident that Mentor @kariulrich will reply with some information soon. It helps so much to hear from others who have experience with the same condition. I’m tagging @artistgma @lmtuska @jamorris9 and others in this group, and inviting them to jump in with their insights, too.

@atjmoney, I’ve been reading that eating very slowly, and having smaller meals more frequently can help some with the nausea. Do you think the nausea and abdominal pain could perhaps be side effects of her medications?

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@worriedmom18

No worries. We will get her treatment expeditiously as possible. We have pending appointments with leaders in this area of medicine . The current surgeon just doesn’t have a lot faith in the MALS surgery so we feel it is essential to get feedback from others. He also only does the lap version unless on the table something goes wrong. She has a sluggish Gallbladder and a stenosis of abdominal artery above 80%. Thank you for your concern we will keep everyone posted and thank you for sharing your story it is very helpful.

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Hi @worriedmom18, I am sorry to hear about your daugher and her MALS diagnosis. Some doctors are not comfortable with the MALS diagnosis or the surgery. It is a rare diagnosis and there has not been much if any substantial research. I would not hesitate getting a second or third opinion. I have heard that children do well with the laparoscopic approach, but I would ask the surgeon what their personal success rate is and how many surgeries they do a year. I know Mayo Clinic Rochester does MALS more cases than most. It is hard to figure this whole diagnosis out when there is a sluggish Gallbladder involved. Another resource is MALS PALS on facebook, there are a lot of parents that post there. I am more familiar with the open surgery, but will try and answer any questions you may have.

Liked by Rho

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@atjmoney

Hello,
My daughter had the ultrasound they determined the nerve was narrow and there was fibrous tissue around the nerve. The surgery was to remove the tissue in hopes of relieving the nerve. It was unsuccessful and we’re back at square 1. The next phase is the full surgery, I’m a little concerned about the healing process. She’s a college athlete and very anxious to get back on the court. Right now her eating has regressed less than 800 calories a day, not good. she’s starting to have pain with exercise, any suggestions on controlling the nausea and abdominal pain. I’m looking at cannabis and other alternative meds. Your thoughts?

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I use ginger for nausea, it is the only thing that helps. I recommend ginger candies, or ginger ail, Bruce Cost is the brand I recommend: http://www.brucecostgingerale.com Has your daughter tried drinking ensure? I understand how difficult it is when you cannot eat due to pain and nausea. I have had MALS surgery twice, and recently had a celiac block which has not given me 100% relief. I am going to give it a bit more time, in the past Tramadol would help, I would take one mid morning and one late afternoon, that way I could eat some without the terrible pain that comes after. Unfortunately, tramadol does not help with the nausea and can sometimes make it worse. I have always wondered if cannabis would be an option since Tramadol is considered addicting. I do not know anything about cannabis, maybe there is someone on here that can enlighten us both. I go to Mayo Clinic Rochester, Minnesota and I do not think they prescribe cannabis.

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I am so happy to see that the MALS community is growing, I find it so comforting to know others are here and understand. One thing I want to mention is that for me when my pain became unbearable, after eating, even on the Tramadol , I would use sublingual nitro. I would take one tablet under the tongue while laying down in bed, it would take 15 min and that intense abdominal pain and pressure would finally subside. It opens up the arteries to get more blood through. It is a medicine that you have to watch your blood pressure with, and it does give you a good headache, but that would subside for me after about 5 minutes. I do not think most physicians understand the pain that MALS patients experience. Once you start losing weight due the pain, the food aversion, going to the grocery store, making dinner also becomes difficult. Our quality of life declines rapidly as we become malnourished. I also think we hide the pain well and put on a brave face. Please know that my heart and prayers are with each of you. I am going on a fishing trip with my Dad this week, we have been trying to do this father/ daughter trip for years, but MALS has prevented me from going. I am about 50-60% better after my last celiac block, so I thought I better go now incase it gets worse again. I am going armed with meds just in case! Thankfully my Dad understands my need for naps etc, when you just do not have the energy! I hoping to have internet connection while I am up north, but it can be hit or miss. If anyone has any questions for me I will try my best to get to them when I have service. Gentle Hugs to you all! Kari

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@atjmoney

Hello,
My daughter had the ultrasound they determined the nerve was narrow and there was fibrous tissue around the nerve. The surgery was to remove the tissue in hopes of relieving the nerve. It was unsuccessful and we’re back at square 1. The next phase is the full surgery, I’m a little concerned about the healing process. She’s a college athlete and very anxious to get back on the court. Right now her eating has regressed less than 800 calories a day, not good. she’s starting to have pain with exercise, any suggestions on controlling the nausea and abdominal pain. I’m looking at cannabis and other alternative meds. Your thoughts?

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I forgot to mention earlier if she is planning an open surgery, it is a huge surgery and a very long recovery time…6-8 months is reasonable to consider recovery time a year for full recovery. I am sure it depends on the condition she is in prior to surgery. If you can get her stable nutritionally it will be helpful. I would meet with a nutritionist who took the time to understand MALS and all the challenges. We met once a week, and I found it very helpful, and did get my strength up prior to my second surgery. How is your daughter handling all this, I cannot believe she is in college while dealing with these symptoms, my heart goes out to her, Can her school make special meals for her that she can easily tolerate? Maybe have small frequent meals and snacks? I was eating 10-12 small snacks a day, very small,, a bite of cheese with a bite of apple. That was a meal, an hour later I would have a few m&ms, what ever I could get down in small quantities. Hang in there!

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Hi @kariulrich. I do have some questions if you don’t mind. I never heard of a celiac block, can you explain that briefly? Also, did you get SIBO, small intestinal bacteria overdose after your surgery? That is when things got so difficult for me as far as pain. Trying to distinguish between the two, arteries or sibo . I used to be able to tell but after awhile, it just overlaps and hurts. I also had an ulcer so throw that in and really hard to say. One of my GI drs said he can’t cure the sibo due to the lesser blood flow. He didn’t even really try, but I do believe that. My surgeon said there’s enough flow I should be fine, but yet even though the arteries are patent, there is severe stenosis. In Feb. 2014 I had SMA and Celiac arteries compressed by diaphragm. Had the open surgery. July I felt that pain and I knew it was back, but my dad suddenly passed and it was so difficult for me, I didn’t pay attention to what was happening to me.I also had to take care of my mom who had beginning dementia and it was progressing. Finally Sept 2015 dr said I had to do something, both were narrowed. I guess I have a lot of scar tissue too. I was to weak to go through the open surgery, decided to put stents in. Seemed to help but still had so much of the bloating and gas and hurting after eating. Since then my focus has been on SIBO, I have done so much research, I should be a dr. everyone says. Unfortunately I do know more than many drs. when it comes to SIBO, that is the problem. My GI referred me to mayo because of this. She also believed the sibo and MALS was connected. I was so happy I thought I could finally get some relief. Unfortunately my dr. at mayo asked if I was going to get an appointment with the vascular dept as well. I thought they all worked together, I don’t want to treat them separately. Of course they are two specialties, but they work together I thought. My dr. also did a sibo breath test, but it is one they don’t use anymore, it doesn’t get the bottom 12-15 ft of the small intestine and the large and colon. That was useless. I am doubting my care here. I don’t know if it is procedure to go through all testing first to see what is causing the pain, but I told them I was diagnosed 3 times with SIBO and the MALS. The dr. also said that my last report said the arteries were patent , but severe stenosis. I said I was a little concerned because I was having a lot of ‘chest ‘pain which is increasing. They did no testing for that. I’m sure you know that a test result of the artery flow can change at any time. I am not sure what to do. The dr. also in her report had my symptoms wrong, and wrong information. For example said I had abdominal pain and bloating my entire life. That is not true. I said this all started after the surgery. I would think that is a crucial point.
Anyway, has anyone experienced anything similar? Any advice? She also wanted a psychological appt. and said I could benefit from biofeedback since I had pain and will have pain my whole life. I did not appreciate that . She made me feel like it was in my head or something. I had records too!!! I also have chronic fatigue syndrome and the surgery brought it out of remission, and back problems. Like you have said, I don’t think people understand the pain we are in every day and I know that I have a high tolerance for pain now since I am so used to it, but that doesn’t make it better. Before surgery I was a middle school special education teacher. I worked long hours and tutored as well. Now I am lucky to go to the store then home and a nap. I won’t eat before I go out because I don’t know what will happen. You all know. Any ideas what I should do?

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@jmmb

Hi @kariulrich. I do have some questions if you don’t mind. I never heard of a celiac block, can you explain that briefly? Also, did you get SIBO, small intestinal bacteria overdose after your surgery? That is when things got so difficult for me as far as pain. Trying to distinguish between the two, arteries or sibo . I used to be able to tell but after awhile, it just overlaps and hurts. I also had an ulcer so throw that in and really hard to say. One of my GI drs said he can’t cure the sibo due to the lesser blood flow. He didn’t even really try, but I do believe that. My surgeon said there’s enough flow I should be fine, but yet even though the arteries are patent, there is severe stenosis. In Feb. 2014 I had SMA and Celiac arteries compressed by diaphragm. Had the open surgery. July I felt that pain and I knew it was back, but my dad suddenly passed and it was so difficult for me, I didn’t pay attention to what was happening to me.I also had to take care of my mom who had beginning dementia and it was progressing. Finally Sept 2015 dr said I had to do something, both were narrowed. I guess I have a lot of scar tissue too. I was to weak to go through the open surgery, decided to put stents in. Seemed to help but still had so much of the bloating and gas and hurting after eating. Since then my focus has been on SIBO, I have done so much research, I should be a dr. everyone says. Unfortunately I do know more than many drs. when it comes to SIBO, that is the problem. My GI referred me to mayo because of this. She also believed the sibo and MALS was connected. I was so happy I thought I could finally get some relief. Unfortunately my dr. at mayo asked if I was going to get an appointment with the vascular dept as well. I thought they all worked together, I don’t want to treat them separately. Of course they are two specialties, but they work together I thought. My dr. also did a sibo breath test, but it is one they don’t use anymore, it doesn’t get the bottom 12-15 ft of the small intestine and the large and colon. That was useless. I am doubting my care here. I don’t know if it is procedure to go through all testing first to see what is causing the pain, but I told them I was diagnosed 3 times with SIBO and the MALS. The dr. also said that my last report said the arteries were patent , but severe stenosis. I said I was a little concerned because I was having a lot of ‘chest ‘pain which is increasing. They did no testing for that. I’m sure you know that a test result of the artery flow can change at any time. I am not sure what to do. The dr. also in her report had my symptoms wrong, and wrong information. For example said I had abdominal pain and bloating my entire life. That is not true. I said this all started after the surgery. I would think that is a crucial point.
Anyway, has anyone experienced anything similar? Any advice? She also wanted a psychological appt. and said I could benefit from biofeedback since I had pain and will have pain my whole life. I did not appreciate that . She made me feel like it was in my head or something. I had records too!!! I also have chronic fatigue syndrome and the surgery brought it out of remission, and back problems. Like you have said, I don’t think people understand the pain we are in every day and I know that I have a high tolerance for pain now since I am so used to it, but that doesn’t make it better. Before surgery I was a middle school special education teacher. I worked long hours and tutored as well. Now I am lucky to go to the store then home and a nap. I won’t eat before I go out because I don’t know what will happen. You all know. Any ideas what I should do?

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I am on my I pad, so excuse all the misspelling and grammatical errors. The celiac block was my second block, they are mainly used to determine if your surgery will be successful. Sometimes they are used after surgery when the pain returns, like in my case. I have had 2 prior open surgeries and the pain came back 2 years after my second. This time they used dexamethasone , a steroid, along with the regular numbing medicine. I noticed my pain was 100 percent gone after the shot, but I did have some side effects, orthostatic hypotenstion that continues to linger, That is normal after a celiac block and so is diarrhea , it has to do with the nerves. I am about 3 weeks post shot and I am feeling about 50-60 percent better, the pain is a bit different now, not as intense but still there. I am going to give it more time, steriods work differently cna it can take longer to experience their full potential. I do not recall any bacteria overgrowth after surgery, both times after my surgeries I used fine and probiotics to help control the uncontrollable bowel symptoms. You do need to be ruled out for chest pain, angina can happen in the heat as well as the gut, and it would be prudent to see if your heart is also causing symptoms. I had a stress test and a MRI of my heart, just a FYI. I know it is tough to hear about the biofeedback and phychologist, but it can help. I have seen a psychiatrist because it is a rare diagnosis, your in so much pain and it highly affects the quality of life. They can’t helps so much with the physical symptoms but having someone listen and understand the difficulty of this disease is helpful. We need all the support we can get, we see vascular doctors, surgeons, GI docs, internal medicine… it is a lot… so I say take advantage of the psych help too. They can’t cure you of MALS but the are great at helping us live a better quality of life by empowering us to speak up to our doctors, biofeedback is pretty cool, it will not make your symptoms disappear but it will help control the stress that comes with the symptoms… does that make sense? I could go on and on! Hang in there… stay strong, we are all here for each other. You are not alone!

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Thanks for your advice. I do have the psychologist appt. scheduled. I used to go actually to my mom’s psychologist after she passed. I would see her with dealing with the stress of being a caretaker while my mom was alive, and it was good to talk to her. It was easy since she knew my parents, the history , my surgeries, etc. I just felt like she, the mayo dr. was dismissing my symptoms as real. I have noticed so many MALS patients have gut problems as well.
So if you have continued pain, is it that your artery is still narrowed? Can you still have the pain without it narrowed? Like I said I get confused as to the sIBo and artery pain. I did get the chest pain checked with my pc. She did ekg and it was normal. I think it was from my artery pain.
Thanks for your help.

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