Median Arcuate Ligament Syndrome (MALS)

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

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!

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?

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!

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.

Thank you for your thoughtful reply. Yes the first surgeon said he hasn't had favorable outcomes and wasn't confident it would help. We have contacted others who actually specialize in this condition so we are eagerly awaiting those appointments. I agree this is a most difficult condition without a direct treatment. But finding the right team of clinicians that feel confident and imbue that sense of confidence and resilience in my daughter is the key. Because after reading here and on Facebook this is sadly a long road for our beautiful girl. Thank you for your feedback it helps so much .

@jmmb so this is where it can get confusing, you can have pain from the celiac artery, however once tha is fixed you can have problems with nerve pain, scar tissue and smaller vessels in the area. There really is no good diagnostic test for causes other than stenosis. A negative ekg is good, but a stress echocardiogram would be better, MRI of the heart... there is also a heart cath angiogram... each test is a bit more invasive so you have to weigh the pros and cons. I understand you felt dismissed with the Mayo doctor, I also have been dismissed by many that did not understand the diagnosis, you are made to think it is all in your head! I was told while lying in the hospital that I should never return to my vascular surgeon, to stay as far away as possible, that I needed to learn the difference between acute pain and chronic pain, it has stuck with me. The doctor that told me this, dismissed a CT scan that showed restenosis of my celiac artery, I suffered for a long time before getting the nerve up to tell my awesome vascular surgeon. I ended up having exploratory surgery which showed restenosis of my celiac graft. I am really sorry to hear this is still happening at Mayo, we need better CME education to all the Mayo staff who potentially could see a MALS patient from the doctors that understand MALS.

Have you had a celiac block by chance???

Please keep me updated! Yes it is a long road for many, but with that said I know of many success stories that have gone on to live a pain free life! They are out there, you just do jot hear about them on these support groups. Thinking of you and your family!

Thank you @kariulrich. . I never was told anything about what you mentioned about the nerve pain or celiac block. I had the angiogram and was told the arteries were good, my pain was not from that so I pursued the sibo. May 2017 I had my ultra sound duplex aorta iliacs bypass grafts. The one where they measure the sound waves. It said : based on systolic velocity this patient high grade stenosis in the celiac and sma arteries, but this is roughly stable compared to prior exam. Now to me that is not reassuring "high grade stenosis" and roughly stable. This is what the Mayo dr. looked at and said its fine then. Now I am curious as to what you are mentioning, maybe there is more to this than I am aware of. Maybe I should get a vascular appt. at Mayo and have their opinion. Maybe there is some nerve pain issues. I know I have a lot of scar tissue as well. This is all so complicated, especially with the sibo....Thank you for your input