Connect
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?
Like
Helpful
HugInterested in more discussions like this? Go to the Digestive Health Support Group.
Connect
I would request to join the facebook MALS PALS closed group, they have a list of doctors
There's a doctor in CT Dr Hsu that's very familiar with MALS. There's also some in FL, IN, and OH
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
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.
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.
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!
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
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
@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!
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.