Median Arcuate Ligament Syndrome (MALS)

Hello I have been following the group for a while and reading the feed. I was diagnosed with MALS about 5 months ago. I have 2 arteries that first were shown compressed by a ligament in an ultrasound and than again in a CT. I have been very sick on and off since my teen years. Through all the illness, the severe stomach pain, the weight loss, the vomiting the diarrhea the multiple visits every year to the ER and several admits as well as exploratory surgeries which one ended up with my gallbladder removed, and still nothing. Until I went to Mayo clinic about 6 months ago and started to doctor for these symptoms that had suddenly persistently gotten the worst they had ever been. I underwent many many tests and saw several doctors. Than a doctor who had heard of MALS did some testing for this and called me the same evening at home after I had my tests and told me I should see cardiovascular. I have since underwent many pre-op clearance testing with GI, Cardiology and Internal Med. I also did a block to see if that would give me relief, in which it did, but sadly for only 3 days. It was 3 very happy and comfortable days! I am now waiting to see Cardiology again in hopes to be scheduled for surgery soon. Years of the pain, and suffering to hopefully have relief finally. On a side note, ten years ago I was diagnosed as a type one diabetic. I was diagnosed at another facility and doctored with them over the last several years. They told me my pancreas was dead and I would be a lifer as the rest of most TI diabetics. Since being a Mayo patient and seeing Endocrinology, I have learned that my pancreas is still working about 20% and they blood flow that has been cut off by the ligament from my arteries is most likely a sure cause that my pancreas has almost died and has given me the life of a diabetic. It is hard some days to know that other doctors could have caught all this, saved my pancreas so many years ago and I would be diabetes free. I am hopeful the blood flow that will be re- entered into my body once I have the MALS surgery will bring my pancreas back to life, but the doctors are only giving it a low chance of this happening. It is a harsh reality to swallow. This is my story and I wanted to share. I am nervous about having the surgery, as we have decided open is the best option. I will be so happy to eat and not have the pain any more.

Your story is very familiar. There’s a Facebook group MALS Awareness Community that has great information and a very supportive group who can help you with many questions. I am scheduled for surgery in January with Dr. Hsu in Connecticut. He has the most experience with MALS. Please check out your options before you decide on treatment. If you have any questions, let me know!

For people who found laparoscopic surgery successful, was it felt immediately or was it more gradual over time? I had surgery 5 days ago. For the first 3 days, I felt great, then on the four day I had pain. Today is better. Also, for those on anti-dumping diets, could you completely go off of the diet after surgery or was take gradual too?

@tutorgrl -I had the laparoscopic surgery 2015. There was immediate relief of the severe pain I used to have after eating. However, there was other pain from the surgery. It affected the diaphragm where the ligament originated. After 5 months the original pain returned. The artery was still deformed from the ligament pressure. A vascular surgeon placed a stent and so far all is well.

Hi,

Does anyone know where Dr. Richard Hsu is currently working. I am looking to find an expert in treatment of MALS and Dr. HSU name keeps appearing in my searches. I have called different numbers found in internet searches and most lead to a call center related to some organization called the vascular group. The numbers route to a call center and I can getting conflicting answers from them. Some operators tell me that Dr. HSU still works there and some tell me he has left the practice. If anyone knows of any Doctors that specialize in MALS in Minnesota, that would also be helpful. The results on my test have unfortunately been conflicting. CT with contrast said mild gastric artery stenosis with possibility of MALS. But ultra sound was negative. Was hoping for more testing to sort this out, but am running into nothing but roadblocks. My current doctors want to explore other things that don't really seem to fit the symptoms of stomach pain. Any advice is appreciated, thank you.

Not sure if you still check this thread... just had an open median arcuate ligament release along with a celiac bypass because my artery also did not open up. How are you doing now... I’m 24 days post op.

@surv1v0r - Congratulations! So happy you had the surgery and that they could do a bypass. I ended up going back to have a stent placed at the compression site. Enjoy being pain free!

He’s in Danbury, Connecticut at The Vascular Experts. FYI-my mals has now been in full blown the time. I can sympathize with you. I’ve been through every GI test. Just went to Vascular surgeon and then, flew to Connecticut to have diagnosis possibly for mas with Dr. Hsu. I had the block. And am now scheduled for surgery. Can’t wait to have all this over and scared if the block wears off before

Hello! So glad to find this exchange. I have been diagnosed with the MALS ins Germany. The diagnosis was confirmed by three clinics. However, despite the clear diagnosis of a compressed truncus coeliacus, I don’t have the typical symptoms, no weight loss, no pain after meals, but extreme pain very early every morning for 11 years ! Do you know if one can contact someone at the Mayo clinic for a second opinion ? Many thanks

Hi! Hardenbeg. I don’t have the typical symptoms either, my weight fluctuates and my pain is not just when eating but randomly happens whether I eat or not and some days I can be almost without pain for hours. I have been confirmed with imaging of the MALS yet I live on the east coast of the US and no one is familiar with MALS in my area and are hesitating to say that my pain is caused by it and I have not found a surgeon to operate. I’m trying to convince my insurance to allow me a third and fourth surgical opinion outside my area with knowledgeable doctors because this is horrible! I hope you have luck in your search. This site is helpful!