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?

Wow jmmb, I have not heard of compression from the diaphragm. I was only aware of compression by the ligament. That must have been a very rough surgery. How long ago did you have it done and who was your surgeon(s)? No wonder you feel it is hard to take in a deep breath at times. I do not know but you may have developed some scar tissue that causes issues. Do you think you had SIBO before your surgery? Did you have any symptoms of SIBO like malabsorption, weight loss, bloating?

REPLY

Well coffeelatte, I did have some stomach issues. I was told IBS and I found out about the MALS when I had severe pain that nothing would help so I went to the er hoping they would just give me morphine or something but dr. insisted on ct scan. Good thing, he noticed narrowed arteries and told me to see vascular surgeon. I still didn’t think anything, pc at the time referred me and boom, said needed open surgery right away.As far as SIBO, I really don’t think so. I never had the symptoms that I do now. The severe boating, gas either constipation or diarrhea. I never had the weight loss associated with MALS either. My surgeon said I didn’t show typical signs. My surgeon at the time was chief of Vascular dept. at University of Az Medical Center in Tucson AZ. He then moved to Texas and I got a new one, Dr. Karou Goshima. I really like her. She did the stents. The malabsorption and bloating was all after the surgery. The difference was I was gaining weight and not at the right pace. I was even on a no sugar diet with my naturopathic dr. since I was feeling so horrible and kept gaining. I did have significant stress at the time. My dad passed, I was taking car of my mom with beginning dementia, and my 2 sisters teamed up against me since I was POA..didn’t want to help me with my mother, left everything to me, but wanted control of money, which wasn’t much believe me. Any way, it was the worst 2 1/2 years of my life. Tore us apart. I practically rose my sisters kids to which killed me. Any way I digress, it is still pretty painful for me, but my drs said the stress of being a caretaker, dealing with my sisters, and my illness was to much for my body. I gained 40 pounds. I wasn’t even eating!!!! I couldn’t recognize myself. I was 118lbs before surgery. Before my surgery I would eat from a big bag of peanut M&M’s, then some oreos and even frozen yogurt and not gain anything. I was like that my entire life. I was 47 when I had the surgery. I did start walking and lost weight and changed my eating. I haven’t been able to walk the past few months but continue to loose weight. I am not eating enough calories, everything hurts, afraid to eat, you know….I have lost 35 pounds, so I am happy about that. If I only had strength to work out a bit and tone up would be nice, or even just get back to walking, but just to exhausted again. I don’t want to loose to much more weight, I am just trying to keep my eating habits, but I don’t even know what to eat anymore……Wow sorry long answer for simple question, and 2014 was open surgery, 2015 stents

REPLY

@jmmb @coffeelatte @worriedmom18 @joyful1 @atjmoney @bpayne @cornishrex @carolina58 @azbluebird @sarah1317 @jamorris9 @bree11 @lmtuska @evrose23 @lisa01 @malsman @artistgma @evileye00 Hi everyone, I wanted to touch base and see how everyone is doing? any tummy troubles recently? I know this can really affect your quality of life and for me MALS has become a chronic health issue. Curious if anyone has had complete resolution from their symptoms? As many of you know I have had 2 MALS surgeries and about a month or so ago had a celiac block. The celiac blocked helped about 60 percent, but now my symptoms have returned and postprandial pain is now more intense. Has any seen any research or heard of any case studies as of late?

REPLY
@kariulrich

@jmmb @coffeelatte @worriedmom18 @joyful1 @atjmoney @bpayne @cornishrex @carolina58 @azbluebird @sarah1317 @jamorris9 @bree11 @lmtuska @evrose23 @lisa01 @malsman @artistgma @evileye00 Hi everyone, I wanted to touch base and see how everyone is doing? any tummy troubles recently? I know this can really affect your quality of life and for me MALS has become a chronic health issue. Curious if anyone has had complete resolution from their symptoms? As many of you know I have had 2 MALS surgeries and about a month or so ago had a celiac block. The celiac blocked helped about 60 percent, but now my symptoms have returned and postprandial pain is now more intense. Has any seen any research or heard of any case studies as of late?

Jump to this post

Wow, I am so sorry Kari that you haven’t been doing as well as you had hoped. My daughter has had a consultation with a vascular surgeon who has a clinical interest in MALs he was very gentle and discussed all the possibilities and risks. We saw him just a week ago and he said he would call us after conferring with his colleagues at the university. My daughter has POTs and EDS as well as MALS. We have another consultation with a different set of surgeons also who also claim familiarity with MALS on 10/3 . She isn’t doing well and even moving to an all liquid diet she still suffers in pain for hours per for each time she consumes any nutrition. The only thing that doesn’t do that thankfully as of yet is water. This is a very frustrating and terrifying illness and the emotional consequences it having on my daughter emotionally is nearly as devastating as the physical implications. Anyway thank you for updating us on your condition and I hoping you find relief soon.

REPLY
@kariulrich

@jmmb @coffeelatte @worriedmom18 @joyful1 @atjmoney @bpayne @cornishrex @carolina58 @azbluebird @sarah1317 @jamorris9 @bree11 @lmtuska @evrose23 @lisa01 @malsman @artistgma @evileye00 Hi everyone, I wanted to touch base and see how everyone is doing? any tummy troubles recently? I know this can really affect your quality of life and for me MALS has become a chronic health issue. Curious if anyone has had complete resolution from their symptoms? As many of you know I have had 2 MALS surgeries and about a month or so ago had a celiac block. The celiac blocked helped about 60 percent, but now my symptoms have returned and postprandial pain is now more intense. Has any seen any research or heard of any case studies as of late?

Jump to this post

@worriedmom18 I understand what your daughter is going through, I also have POTS and EDS… so when your hit with symptoms from all three and you cannot sort them out it can be so overwhelming. I had worked with a nutritionist during a difficult time and what she suggested is eating a carb with a protein, then carb with veg/or fruit and keep doing that every hour or every few hours. I could tolerate carbs a bit better than anything. So I would have 1 cracker and a little peanut butter, then try a couple bites of toast and 1 mini carrot , cereal was good if it was dry, occasionally I could have milk. I know it is difficult when you are on a liquid only diet… my heart goes out to her. I was able to tolerate gummy vitamins at times. I know how fast our bodies become malnourished and it is so difficult to bounce back from, even after surgery. It sounds like you have found a great vascular surgeon, I found my surgeon the most support and understanding when it comes to MALS. Please know I am thinking of you and your daughter. Much love!

REPLY

Hi @kariulrich and everyone else. Well as you know from my posts, I have been going to Mayo in Scottsdale AZ. This was for GI issues. I recently met with a vascular surgeon and really liked him. I felt he was pretty educated. Before we go any further, he has me scheduled for CT angiogram with contrast to see how stents are doing. I mentioned the celiac block to him and he explained that, but wont know anything until scan.
My questions are if anyone has had any of the following happen to them and if so, what do you suggest. I was referred to Mayo GI due to SIBO. I have had 3 positive breath tests. First test was breath test with 50g of glucose and 2 hours. From most of my research that will only show top of small intestine. You need lactulose and at least 3 hours. My previous tests showed me peaking at about 2 hours and then way high. Also with glucose it is suppose to be 100g if used. My dr. says I absolutely don’t have sibo. My gastric emptying tes showed faster than normal in the small intestine, and the very lowest number in the range of the other 2. It was 5 hours and come back next day. She said it was fine. My fructose breath test was negative but my lactose was positive with high numbers. I knew I had lactose intolerance before. I am afraid she will say this is why my symptoms and I don’t beliee so since I have had that my whole life and all these symptoms now are just after the MALS 1st surgery. I also can’t tell anymore which pain is from which problem. All previous gi drs said won’t be able to get rid of sibo since arteries are narrowed and not enough blood flow. My previous surgeon said no it is fine. I am curious to see what the surgeon at Mayo in vascular says. For 3 years I have been researching sibo and now I am told I don’t have it on a test I don’t have much faith in. My gi dr. at Mayo said that one is better than the lactulose. I don’t know what is wrong with me anymore I feel like.
Anyone else have this?

REPLY
@kariulrich

@jmmb @coffeelatte @worriedmom18 @joyful1 @atjmoney @bpayne @cornishrex @carolina58 @azbluebird @sarah1317 @jamorris9 @bree11 @lmtuska @evrose23 @lisa01 @malsman @artistgma @evileye00 Hi everyone, I wanted to touch base and see how everyone is doing? any tummy troubles recently? I know this can really affect your quality of life and for me MALS has become a chronic health issue. Curious if anyone has had complete resolution from their symptoms? As many of you know I have had 2 MALS surgeries and about a month or so ago had a celiac block. The celiac blocked helped about 60 percent, but now my symptoms have returned and postprandial pain is now more intense. Has any seen any research or heard of any case studies as of late?

Jump to this post

Thank you so much and I will keep everyone updated ! And please know our thoughts and prayers are with everyone as well.

REPLY
@jmmb

Hi @kariulrich and everyone else. Well as you know from my posts, I have been going to Mayo in Scottsdale AZ. This was for GI issues. I recently met with a vascular surgeon and really liked him. I felt he was pretty educated. Before we go any further, he has me scheduled for CT angiogram with contrast to see how stents are doing. I mentioned the celiac block to him and he explained that, but wont know anything until scan.
My questions are if anyone has had any of the following happen to them and if so, what do you suggest. I was referred to Mayo GI due to SIBO. I have had 3 positive breath tests. First test was breath test with 50g of glucose and 2 hours. From most of my research that will only show top of small intestine. You need lactulose and at least 3 hours. My previous tests showed me peaking at about 2 hours and then way high. Also with glucose it is suppose to be 100g if used. My dr. says I absolutely don’t have sibo. My gastric emptying tes showed faster than normal in the small intestine, and the very lowest number in the range of the other 2. It was 5 hours and come back next day. She said it was fine. My fructose breath test was negative but my lactose was positive with high numbers. I knew I had lactose intolerance before. I am afraid she will say this is why my symptoms and I don’t beliee so since I have had that my whole life and all these symptoms now are just after the MALS 1st surgery. I also can’t tell anymore which pain is from which problem. All previous gi drs said won’t be able to get rid of sibo since arteries are narrowed and not enough blood flow. My previous surgeon said no it is fine. I am curious to see what the surgeon at Mayo in vascular says. For 3 years I have been researching sibo and now I am told I don’t have it on a test I don’t have much faith in. My gi dr. at Mayo said that one is better than the lactulose. I don’t know what is wrong with me anymore I feel like.
Anyone else have this?

Jump to this post

@jmmb All of my GI tests came back normal, like you my small intestine was a bit faster, and large intestine slow…they also told me this was normal, as far as your other tests etc…Mayo will sometimes have different parameters that they measure things by then what you find on the internet, ask them about it. Ask you Dr. Why they do not think you have SIBO, tell them what concerns you. The doctors are more than happy to explain, it is there area of interest and they want you there understand. Do not be afraid to tell them what you know, and why you think differently, that is part of advocating for yourself. Trust your self, you know what your body is telling you better than anyone. It will be interesting to see what the vascular doctor has to say. I know you have read a lot about SIBO, thought I would post this article as a reference for others. Keep us informed! http://www.mayoclinicproceedings.org/article/S0025-6196(16)30589-4/pdf

REPLY
@kariulrich

@jmmb @coffeelatte @worriedmom18 @joyful1 @atjmoney @bpayne @cornishrex @carolina58 @azbluebird @sarah1317 @jamorris9 @bree11 @lmtuska @evrose23 @lisa01 @malsman @artistgma @evileye00 Hi everyone, I wanted to touch base and see how everyone is doing? any tummy troubles recently? I know this can really affect your quality of life and for me MALS has become a chronic health issue. Curious if anyone has had complete resolution from their symptoms? As many of you know I have had 2 MALS surgeries and about a month or so ago had a celiac block. The celiac blocked helped about 60 percent, but now my symptoms have returned and postprandial pain is now more intense. Has any seen any research or heard of any case studies as of late?

Jump to this post

Hugs!

REPLY

Thank you. It’s nice to know you are not alone in all this. Did you have those sibo symptoms?

REPLY

I just read the article you mentioned. Very interesting. I have been reading about this ‘gold standard’ for sibo testing the jejunal aspirate. I think I am going to ask my dr, for it. I need to know for sure if it is sibo or not, and I believe there is plenty of justification to do it. Plus the article was written by Mayo drs so she can’t argue that! Thank you so much, this is really helpful.

REPLY
@jmmb

Thank you. It’s nice to know you are not alone in all this. Did you have those sibo symptoms?

Jump to this post

I do have symptoms of SIBO, I know I was tested years ago, but everything came back normal. I was told at the time I have irritable bowel syndrome, and I believe that may be the case, however the symptoms for me have coincided with postprandial pain. My pain is also relieved with sublingual nitro, so I am more persuaded by my symptoms being brought on by MALS or a vascular event. I have heard of other patients that deal with pancreatic insufficiency after having mals surgery. I really hope that more research can be done, and that patients would receive better follow up care. There really is no educational materials available for us, and long term support is left to us!

REPLY

What is sublingual nitro? I’m thinking it sounds like a medication for the heart? So many things you have mentioned I haven’t been told about as far as the MALS so thank you, this is helpful for me and many others I am sure.

REPLY
@jmmb

What is sublingual nitro? I’m thinking it sounds like a medication for the heart? So many things you have mentioned I haven’t been told about as far as the MALS so thank you, this is helpful for me and many others I am sure.

Jump to this post

@jmmb , yes Nitro is commonly used for chest pain like angina, it also works for intestinal angina. MALS constricts the arteries by compression of the ligament. Most people, once the ligament is released are symptom free, however some people’s arteries have “memory” of the constriction and even after bypass can cause problems. In my case my arteries look open and flowing upon all tests, but I believe at times, mainly after I eat or exercise my arteries vasoconstrict so much that they go into spasm and cause pain. Nitro, a vasodilator opens the arteries up, and the pain goes away. Unfortunately your body can get use to nitro just like it can any medicine. I try and use it sparingly. Does that make sense?? What has worked best for me is Tramadol before meals, but doctors are not comfortable prescribing this medication because of its opioid effect. This makes it a challenge for me and my doctors. There is a combination of things that are contributing to MALS pain, another is the ganglion nerves… there is just not an easy fix.

REPLY

Again, thank you. I have a CT angio this week so will be anxious to see results. Never know where my symptoms or pain is from anymore. Like I have said for 3 years was told SIBO, Mayo gi said no, but no answers, could be MALS, but hope not. But you have given me new information that I can ask educated questions about to my surgeon so that is helpful. thanks again…..

REPLY
Please login or register to post a reply.