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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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Thank you so much for your reply!
I was not given a choice of laproscopic vs open. The surgery was completed by a general surgeon with a vascular surgeon in the room. I will see the vascular surgeon on Wednesday as well.
What you said makes sense about possibly having a kink still, and hopefully fixing that will bring relief.
Reading a lot of the entries here, have been so helpful and encouraging, just not feeling alone.
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.
I should mention that the pain can be present prior to eating but becomes much worse after eating. Many times causing me to avoid eating, at least until night time when I am home from work and can suffer in the privacy of my home
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1 ReactionI was diagnosed with MALS in February of this year and underwent surgery in March, i still have persistent diarrhea anywhere from 5 to upwards of 17 times a day. I understand your pain. I have tried everything medication wise too. It is utterly exhausting. The surgery initially helped my vomittng, but after a few months my symptoms came back way worse than before. Im waiting to see if my artery have become compressed again and what we will do after that. I would highly suggest you get a surgeon that knows what theyre doing and has experience with MALS.
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1 ReactionAlso, if you have facebook, there is a page called MALSPALS, theyre very helpful.
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1 ReactionI 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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2 Reactions@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!
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1 Reaction@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.
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1 Reaction@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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1 ReactionThank 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!