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?

@kariulrich

Hi @evrose23! After discussion with my vascular surgeon, open procedure was the only option for me. I have an underlying vascular disease and laporoscopic would have put me at a greater risk. I believe that there is better visualization in the open procedure vs laparoscopic, and it really depends on the patient’s age and how long they have been diagnosed. Children are a whole different story, and laparoscopic seems to have a great success rate. For me, my artery did not open up after the ligament release so I had to have a bypass done. Let me know how your CTA goes!

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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.

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@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!

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@gtjdna

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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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

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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

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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!

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Can anyone recommend a GI at Mayo, Rochester? I have one but she's not very supportive even after the CTA and Doppler revealed MALS. She keeps undermining my symptoms so Vascular isn't seeing my symptoms as a problem and then she won't schedule me with the surgeon I want to see, Dr Oderich. She's forcing me to go through procedures like pelvic floor therapy,which I've had before. I'm to the point I want to give up because I hurt so bad and shes ignoring me? Even tried going to patient experience about it but of course they're siding with the doctor. I can't afford this pelvic floor therapy and my insurance doesn't cover it.

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I had lap surgery 4 weeks ago along with unroofing of the nerves of the celiac plexus. My symptoms returned within 5 days and seem to be worse now than before surgery. Has anyone else experienced this? I have pain with eating that radiates to the back.

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@tutorgrl

I had lap surgery 4 weeks ago along with unroofing of the nerves of the celiac plexus. My symptoms returned within 5 days and seem to be worse now than before surgery. Has anyone else experienced this? I have pain with eating that radiates to the back.

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Wow where did you have the surgery? That's strange, I know on the MALS pals facebook page alot of people have had surgery. From some of the posts it seems like the open surgery has better results but I'm not a doctor. I know I've been told it takes a while sometimes to heal as well so it might take a bit before your feeling better. Good Luck

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@jessicakristen

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!

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There's a doctor in CT Dr Hsu that's very familiar with MALS. There's also some in FL, IN, and OH

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I would request to join the facebook MALS PALS closed group, they have a list of doctors

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@sclindajanssen

I had MALs lap surgery at Mayo 1 year ago. I’m doing great now. About 15 signs/symptoms disappeared after surgery. Lap surgery was tougher than expected. Much more difficult than my C-sections. 2 months of nausea, 8-10 months of fatigue. But very well worth it.

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HI. Who did your surgery at Mayo? Was it Dr. Bowers? I am waiting for a celiac nerve block to be scheduled then, if it relieves the pain and symptoms, I can get an appointment with the Dr.

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Nice try

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@jmacbain

There's a doctor in CT Dr Hsu that's very familiar with MALS. There's also some in FL, IN, and OH

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Which surgeons are you referring to in FL that have experience with MALS?

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@tutorgrl

I had lap surgery 4 weeks ago along with unroofing of the nerves of the celiac plexus. My symptoms returned within 5 days and seem to be worse now than before surgery. Has anyone else experienced this? I have pain with eating that radiates to the back.

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@tutorgrl – Hi! I know it’s discouraging if the symptoms returned so soon after surgery. Have you talked to the surgeon about this? There could be a couple of causes, such as post op swelling in the area putting pressure on the artery, or if the artery was kinked because of the ligament’s pressure and has not opened up. That happened to me after 4-5 months. A stent was placed and it has been fine for 4 years so far.
Definitely let the surgeon know.

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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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I am following in your path..I am scheduled for the celiac plexus block on 11/26 and hope to feel some relief too. If positive, I can plan for MALS surgery. Will you use Dr. Bowers? He is the one who I am being guided to. Thanks

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