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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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Jayson, I can relate. When I had my initial diagnosis in 2015 I saw so many GI docs and most of them were so incredibly dismissive. My first one seemed to have only one answer: take more prilosec, take protonix, double up on protonix. So I finally said to him "is that your only answer, take more acid suppressants?" and he got visibly angry at me and said "do you want to get well?" So condescending. Then I had an ER doc accuse me of just being a drug seeker and sending me home after zero tests. After doing every GI test imaginable I finally saw an RN at an urgent care office who looked at my history and offered to make some calls for me on her lunch break. She set me up with a young GI specialist who ordered a HIDA scan (all clear) and the mesenteric artery ultrasound that finally diagnosed me. If it wasn't for those two, I have no idea how much longer it would have gone on.
Unfortunately, like you, I am having a recurrence of symptoms after 5 years. Last night was the worst night I've had since 2015, sharp pain building up, had to take an oxycodone and sleep propped up, then I still woke up nauseous. That has been my worst symptom and thankfully this time around, I am not having too much trouble eating. Once I get up and move around the nausea fades but pain persists. I'm getting a nerve block done next week and hoping the pain care center will also offer me some help over the next few weeks while I wait for what I expect to be a second surgery.
As far as seeing a new surgeon, I would at least google search and see what other patients have reported. The one I've been consulting is very young but has a special interest in MALS. Another surgery is scary to think about but so is living with constant bouts of pain/nausea.
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2 ReactionsI can only imagine how your feeling and going through. My symptoms started back up with the pain and discomfort that came from eating. The pain starts below my sternum and rib area. I get a burning and knocking the air feeling. Nausea and having very low energy due to my pain. Again I'm hopeful that my new vascular surgeon helps in this journey to getting well. However, if she doesn't then my general surgeon said the next option would be to have another open surgery to remove the scar tissue. He stated that he has never done two open surgery before and it's very risky to do. My first surgery was a 4-hour ordeal. The ligament that he had to cut was extremely difficult to remove. He said the risky part was the surgery would more than likely be double the time because of the scar tissue that is built up. Well, I pray that your pain and discomfort go away when you get the nerve block.
That’s funny! I used to eat licorice all the time! I’m going to give that a try. What brand do you use?
My surgeon, Dr. Hsu in Stamford, Ct was amazing. He has a 92% success rate with MALS and is a Nuevo-Vascular surgeon. He has done almost 400 MALS open surgeries. I chose to fly from Phoenix to Ct. bc I didn’t want to do this again. It’s worth the extra effort. Hope you find someone.
Look at this site!
@jayson - I realize that I must have been very lucky with surgeons. At my first visit I decided to go ahead. I had educated myself first of the condition and who the surgeon was. He was head of GI surgery at a major university hospital. He had not performed many MALS surgeries during his long career, but was able to give me the odds of success. I did trust him and I knew I didn’t want to continue with the pain. The surgery was a success. However after 6 months the artery had crumpled up some and the top vascular surgeon placed a stent. So far so good.
In other words- my initial surgeon was not a vascular surgeon.
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1 ReactionIf you’re on Facebook take a look at Mals Awareness-they have a list of surgeons who have done mals surgery and people that you can ask questions.
I used to eat a lot of Pontefract cakes or Barratt Hard Liquorice sticks (not sure of the US equivalent.) Sadly, my sweet eating days are over as pretty much all sweets contain Palm oil or High fructose corn syrup, two ingredients I generally avoid. There is an alternative, using natural liquorice root sticks and making into a tea (do a search,) it is a staple in Chinese herbal medicine.
Yesterday I had a celiac plexus block done by Dr. Krutsch in Denver. I'm happy to report that it worked. This was just a diagnostic block so it's starting to wear off this morning, but it was so incredibly nice to feel "normal" again for a while. I had forgotten what that felt like. What also surprised me is I have had diffuse right flank pain ever since my first MALS surgery in 2015 and that also went away completely. I am hopeful that if I have a second surgery done all of this pain and nausea will go away. The surgeon I've been working with is most likely going to want to do an open procedure similar to what Dr. Hsu does.
If anyone out there suspects they have MALS I would really recommend trying to get a celiac plexus block to see if it provides significant relief.
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1 ReactionI'm so glad to hear positive results for you. I had MALS surgery in 2013. Went to Mayo in 2019 and they suggested the injection. I'm going to a university in my area and getting worse. I too am just starting to have moderate to severe pain that runs into my left lower back, this is a new symtom. In hospital x2 the last 2 weeks. Passed out end of Oct at work was diagnosed with ortho hypertension. My BP is high again ....when diagnosed with renal and carotid FMD. I now can't drink without getting sick. The CAT scan showed stenosis in celiac artery which is mild.?? Doctor's are saying they don't know what this is. It is same symptoms as when I had MALS. I did take a drug Rifaxinin which seemed to help with my SIBO. I'm not sure what I'm going to do. Not able to eat or drink is not a healthy quality life. Wishing you the best!!