Median Arcuate Ligament Syndrome (MALS)

Posted by Kari Ulrich, Alumna Mentor @kariulrich, Dec 26, 2016

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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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.

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@tutorgrl

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?

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@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.

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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?

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@missmirandasue5

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.

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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!

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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.

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@kariulrich

@bree11 Here is some very basic information about MALS: https://my.clevelandclinic.org/health/articles/median-arcuate-ligament-syndrome-mals
There are a few good papers on MALS geared toward the medical professional also, wish there more! There needs to be more awareness done on this condition. Have your doctors considered a GI motility study? For me most of my GI work up came back normal, I had a some motility issues but not significant enough to raise eyebrows. It is a long diagnostic road, but worth taking in the end. If the tests get too much, let the doctors know. Sometimes I needed to take a month off of testing just to get away from the hospital awhile. (With my doctor's permission). I was fortunate that my Mayo team really believed in shared decision making. The fact you found a doctor that is willing to look further into MALS is priceless! That says a lot, and you may find that you may be guiding your care and teaching more than you expected. Don't be afraid to tell him what you have learned.

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Sometimes all the testing makes things worse, so I agreed, if you need a break take it!

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@kariulrich

@jmorgs I am so sorry to hear what you and your daughter are going through, and it looks like you have a bit of rough journey ahead but you are not alone. This is an awesome group of people, many who have been through what you and your daughter are experiencing now. She sounds like she is a strong surgical candidate and that surgery could minimize her symptoms greatly. Because of her added diagnosis it is always a bit more challenging. Recovery for me was long, however I had an open surgery/bypass. I think many people have long recovery, it is much like having a complete hysterectomy for open surgery. 6-8 weeks of the initial recovery then it is slow going but progressive change of symptoms over a years time. It is a differ recovery in that you feel better after surgery, but your body takes time to adjust to having blood flow. Many people who have surgery ( who don't post here) are completely recovered and do well after surgery with no residual effects, so please keep that in mind when reading posts. I just like to mention that because it can be overwhelming with reading others experiences.

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Thank you for your prompt reply and I apologize for my very delayed response. It has been a rather hectic couple of weeks since my initial post. My daughter has since had and endoscopy, and a gastric emptying study, both test her GI doctor wanted done to rule out any other issues. In between the two she was also admitted to the hospital for a couple of days after being found unconscious by her roommate from severe dehydration/electrolyte imbalance from all of the vomiting. They had her on a full liquid diet with one soft food meal a day but since then have restricted her to full liquid with 3 protein shakes a day until she has her vascular surgery consult on October 12th. That feels like a long wait and a long time for her to be on such a restricted diet when she is already so small but between the liquid diet and the Zofran every eight hours she at least seems to be experiencing much less pain and nausea. While it sounds like the road ahead could still be an uphill battle at times I am thankful for a diagnosis that finally explains all of the pain/nausea she has had over the years. She is thankful too although currently very mentally and physically drained and really wanting to be able to eat solid foods again!

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Does anyone experience back problems with MALS?

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@elle1233

Very interesting, Ingegerd, TY for replying. How did your doctor come to suspect or find the MALS? I read on one website that it can be seen on a CT scan.

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It originally was found on on Doppler ultrasound of abdomen, but was considered a false positive because on CT and MRI blood flow appeared normal. Four years later my internist referred me to another university medical center for a second opinion. There I had a CT angiogram that clearly showed the compression of the celiac artery. It has to be an angiogram for diagnosis- not a regular CT with contrast.
Happy ending! Almost..

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