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?

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linda

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@kariulrich and anyone else I have another question. My MALS and “sibo” overlap. I am wondering if anyone else diagnosed MALS, has issues with the constipation for days, then frequency of bowel movement several times a day. A feast or famine as I call it. I definitely have the pain and bloating after eating, so that can be either. Curious about the bowels because this is a huge problem for me besides the pain.
Thanks….

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@jmmb

@kariulrich and anyone else I have another question. My MALS and “sibo” overlap. I am wondering if anyone else diagnosed MALS, has issues with the constipation for days, then frequency of bowel movement several times a day. A feast or famine as I call it. I definitely have the pain and bloating after eating, so that can be either. Curious about the bowels because this is a huge problem for me besides the pain.
Thanks….

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@jmmb YES YES YES!!!!! I have the same problem, my MALS surgery helped with the pain but never the GI/bowel issues. Today is one of those days where I cannot leave the house… it is so severe. It takes up all my energy and I am left feeling so fatigued. The malabsorption issues have never improved for me. The one thing that has helped, but not cured these symptoms is gummy bear type fiber! I am with you about this being a huge problem.

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@jmmb

@kariulrich and anyone else I have another question. My MALS and “sibo” overlap. I am wondering if anyone else diagnosed MALS, has issues with the constipation for days, then frequency of bowel movement several times a day. A feast or famine as I call it. I definitely have the pain and bloating after eating, so that can be either. Curious about the bowels because this is a huge problem for me besides the pain.
Thanks….

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Here is the fiber I use: https://www.amazon.com/dp/B00DKN8E0M

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Well I am not crazy!!! (not that I wish this on anyone…)I can’t figure this out. It totally sucks……I just did breath test for lactose, and it was positive. I knew this already for years. I’m afraid tomorrow at the GI follow up she is going to say that is where my symptoms come from, but NO, I didn’t have these symptoms before surgery. Yes if I ate ice cream I would have an issue, but this is different. I’m sure it doesn’t help, but this is not why. If I go tomorrow and she says its the lactose intolerance and irritable bowl I am going to loose my mind!!!! I will be back where I was 3 years ago with no answers. Sibo made sense, and with 3 positive tests I was hoping to get relief here. I know the MALS is related and will be lifetime. It is all related……I don’t know why some doctors can’t see that. Thanks for the fiber into. I use Miralax but not regularly because it depends on if its feast or famine time…..I will try yours.

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@jmmb

Well I am not crazy!!! (not that I wish this on anyone…)I can’t figure this out. It totally sucks……I just did breath test for lactose, and it was positive. I knew this already for years. I’m afraid tomorrow at the GI follow up she is going to say that is where my symptoms come from, but NO, I didn’t have these symptoms before surgery. Yes if I ate ice cream I would have an issue, but this is different. I’m sure it doesn’t help, but this is not why. If I go tomorrow and she says its the lactose intolerance and irritable bowl I am going to loose my mind!!!! I will be back where I was 3 years ago with no answers. Sibo made sense, and with 3 positive tests I was hoping to get relief here. I know the MALS is related and will be lifetime. It is all related……I don’t know why some doctors can’t see that. Thanks for the fiber into. I use Miralax but not regularly because it depends on if its feast or famine time…..I will try yours.

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@jmmb I am with you 100 percent that these issues are related! I was just reviewing my new GI doctors notes, he has a special interest in vascular GI problems. One of his differential diagnosis for me is visceral hypersensitivity syndrome, which I had not heard of, but makes sense. I will try and copy and paste an explanation here:
Visceral Hypersensitivity: A Major Source of Abdominal Pain
Christina Lasich, MD , Health Professional
If you have ever been sunburned, then you have experienced hypersensitivity. Your skin was very sensitive to light touch, warm water and clothing for days. Well, imagine if that sensitivity was being experienced in your gut. Some people are troubled by such a problem called visceral hypersensitivity.

The phenomenon of hypersensitivity involves the nervous system. At some point, the irritation to a particular organ system like the skin or the gut leads to the sensitization of the nervous system, the alarm system. In severe cases, the central nervous system becomes so hypersensitive that everything seems to hurt. Painful stimuli become even more painful; that sensitivity is called hyperalgesia. Even non-painful stimuli like touch become painful; this sensitivity is called allodynia. In the case of visceral hypersensitivity, everything from digestion to urination can become painful. Thus, many conditions are linked to visceral hypersensitivity like: noncardiac chest pain, nonulcer stomach pain, irritable bowel syndrome, and severe menstrual cramps.1 All of these conditions are really just a form of visceral hypersensitivity. And many people are affected by one form of it or another.

For one reason or another, irritation to the internal organs early in life2 or chronic irritation for many years can lead to visceral hyperalgesia. This matter is not just about physical insults or inflammation. This matter can also be caused by anxiety and stress. But all roads eventually lead to the central nervous system, the brain.

Women seem to be the most commonly affected group of people. But the diagnosis of visceral hypersensitivity can be difficult because gut pain can be so vague, so hard to pinpoint and so widespread. The biggest hallmark of visceral hypersensitivity to watch out for is pain provoked with normally non-painful stimuli. Some people might experience pain right after ingesting food or water or while the bolus of food or water moves through the intestinal tract. Others have pain when the bladder is full or when it is time to have a bowel movement. Pain during normally non-painful body functions is a clue that the abdominal organs might be hypersensitive.

Once the diagnosis of visceral hypersensitivity is made, the treatment can be tricky. At first, medications used to prevent overstimulation can be used like proton pump inhibitors that reduce stomach acid production or spasmolytics that reduce gut motility. A secondary approach might introduce medications used to treat nerve pain like the anti-convulsants (that can calm the nervous system) or the tricyclic analgesics (that can also reduce nervous system sensitivity). Of course, there is an option to use opioids, but that can also lead to long term consequences like opioid-induced hyperalgesia and more pain. Alternatives to medications are also worth mentioning for the treatment of visceral hypersensitivity, especially those that provoke a relaxation response like meditation, hypnosis or visualization. Like most forms of nervous system sensitization that cause pain, a multi-dimensional approach is more likely to work than a singular approach to this very difficult problem.

For many people who experience this type of abdominal pain, it is difficult to switch the focus away from the gut and to the brain. But for centuries, people have long understood that there is a very strong connection between the gut and the brain. Visceral hypersensitivity entangles both the internal organs and the central nervous system in a nasty web of chronic pain. In order to untangle that web, the source of pain needs to be treated all the way to the brain.

Gut. 2006 July; 55(7): 905-908.
Journal of Pediatric Gastroenterology & Nutrition: October 2005 – Volume 41 – Issue 4 – p 554
https://www.healthcentral.com/article/visceral-hypersensitivity-a-major-source-of-abdominal-pain

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PS. interesting about the lactose test, however that cannot possibly explain everything. It is a piece of the puzzle, which I hope the doctor recognizes. Let me know how things go! I am anxious to hear what they have say. 🙂 Hugs!

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I have heard a little about visceral Hypersensitivity. I read about it with sibo actually. The gi dr at mayo had me go to psychologist to do the timed breathing. I get how it can help in some areas, but not sure if that addresses the bloating and all feast or famine bowel movements. Seems more for pain, but I guess they are saying the nerves are making me feel this way. The bloating is visual though as well. It is all so complicated. I assume this is the same thing as something I saw on Mayo website called Central Sensitization. There was a short video clip. It’s interesting. I am not sure where or how I found it though….
Well I will see what she has to say tomorrow, then onto vascular next……
Again thanks for all your info…I will keep you posted.

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@kariulrich ,Well I went to the nutritionist and she put me on the low FODMAP diet. I haven’t started yet but we will see. I tried to do this once before but didn’t really follow through, to complicated. I am going to do it for real this time to see. I did my ct angio and tomorrow I go to vascular surgeon so will see what happens. GI dr. wants me to go for anorectal manometry and proctogram tests. She thinks possibly pelvic floor dyssynergia. I don’t know, I am so tired of all the tests and these don’t sound fun. Have you had either? She does believe I have some visceral hypersensitivity, but that doesn’t explain the bloating. That is where the fodmap diet comes in. I am going to ask the vascular surgeon about the celiac block as well tomorrow…..

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@jmmb It is good to hear from you! I am interested in hearing how the diet works for you. I do not know much about it, but I found this patient blog: http://www.ibsdiets.org/fodmap-diet/fodmap-food-list/ have you seen this before? It looks like a very complicated diet, but well worth it if it helps. I know having test after test stinks, but it gives you a bigger picture of what is happening. I have been through some testing for pelvic floor problems, as well as physical therapy… lol yes… physical therapy… you can imagine what that entails. Visceral hypersensitivity is interesting and I am learning more and more about it. One thing new for me this week was starting on a calcium channel blocker, I have been on it for 3 days and so far it has helped. It opens up your arteries to improve blood flow. I am tapering down on my tramadol. Have you seen this article? https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2778114/ Although it is a bit dated I found it very helpful at understanding abdominal vascular problems, you may want to take a look.

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@kariulrich, thanks for the info. I haven’t seen that fodmap site before, but it looks good. It is so overwhelming. They need to make an app where you can scan the item and it lets you know if you can eat it or not. It is difficult to look at every ingredient. As for the article, haven’t seen that one. I am always looking for newer articles for treatments, but for other info I don’t think it matters so thanks. I will be reading that next. Well I am happy that the calcium blocker is helping for you. My last vascular surgeon said she didn’t think any of my pain, or symptoms was from the arteries since they were patent, and that was that. It seems you have a good vascular dr. that helps you with options. Hopefully this new one will for me. I don’t want more meds and tests, but I would like some relief. Especially the exhaustion, but maybe that is from all the back and forth for testing and appointments….haha….Well thanks again. YOu always have helpful info!!! I will let you know what happens at my appt…..

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@jmmb

@kariulrich, thanks for the info. I haven’t seen that fodmap site before, but it looks good. It is so overwhelming. They need to make an app where you can scan the item and it lets you know if you can eat it or not. It is difficult to look at every ingredient. As for the article, haven’t seen that one. I am always looking for newer articles for treatments, but for other info I don’t think it matters so thanks. I will be reading that next. Well I am happy that the calcium blocker is helping for you. My last vascular surgeon said she didn’t think any of my pain, or symptoms was from the arteries since they were patent, and that was that. It seems you have a good vascular dr. that helps you with options. Hopefully this new one will for me. I don’t want more meds and tests, but I would like some relief. Especially the exhaustion, but maybe that is from all the back and forth for testing and appointments….haha….Well thanks again. YOu always have helpful info!!! I will let you know what happens at my appt…..

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One last thing before I go to bed! I have asked my Doctors for a testing holiday, I asked for a month off of all the testing so that I could catch my breath. They were good about obliging me. Also, not to add to your confusion, all my vascular testing (Non-invasive) came back normal. Grrrrr It was the invasive cath angiogram that showed the severe stenosis. I have heard that Ultrasound does not show stenosis unless it is at least 75-80 percent occluded… maybe someone could clarify that? Anyways, hang in there! Chat with ya soon!

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Hi Kari, Well had the vascular surgeon appt and went over results. Imaging showed something with celiac artery, but sma was ok. Tues. I am going for the invasive angio. If he needs to do something he will do it then. Also he said that the stent in the celiac didn’t go far enough into the aorta so was thinking of possibly extending that. If this doesn’t help with symptoms we will discuss the celiac block like you had said. I did email him today though asking about extending the stent, and if so would that be recovery like when stents were done. I had a hematoma so that caused more time in the hospital, but otherwise I think only a 2 night stay. As for the fodmap diet, well I am going to put that off till we see what is going on with my arteries. If he does do something I want to be clear on what hopefully helped symptoms. I am also taking a ‘break’ from the testing after this for a bit. This is exhausting as you know.

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@jmmb

Hi Kari, Well had the vascular surgeon appt and went over results. Imaging showed something with celiac artery, but sma was ok. Tues. I am going for the invasive angio. If he needs to do something he will do it then. Also he said that the stent in the celiac didn’t go far enough into the aorta so was thinking of possibly extending that. If this doesn’t help with symptoms we will discuss the celiac block like you had said. I did email him today though asking about extending the stent, and if so would that be recovery like when stents were done. I had a hematoma so that caused more time in the hospital, but otherwise I think only a 2 night stay. As for the fodmap diet, well I am going to put that off till we see what is going on with my arteries. If he does do something I want to be clear on what hopefully helped symptoms. I am also taking a ‘break’ from the testing after this for a bit. This is exhausting as you know.

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Overwhelming but good news! This could be the opportunity for some relief, It sounds like your vascular surgeon is on top of this. I will be thinking of you, invasive procedures are never fun, and they can be stressful. Hang in there, you got this! 

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Thank you. It is really helpful that this group is here and you have been so helpful to me. I can’t thank you enough!!!

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