Hi! I’m so sorry for all you’re going through. I had mals surgery a year ago and no longer have the knife stabbing pain. My suggestion would be ( if you use Facebook) to go to a group called Mals Awareness. There’s loads of information about mals. People are so wonderful and can help with their experiences. I couldn’t have gone through this without them.

Oh don't you just love it when someone says you "JUST HAVE IBS" as if it's not important, doesn't cause pain, doesn't change quality of life etc. etc. I do appreciate (most) doctors but it's 2021 !!!! By now should someone have to go through all of this, including surgery, and still suffer? And if I hear any more that IBS is brain-gut I will scream. How about its gut-brain, as in, something is wrong with our gut and it is saying to the brain: hey, I hurt, can't you figure this out for me?

@etr - Welcome to Mayo Connect! There are many of us here with a MALS diagnosis.
First of all, I can’t believe you were told that you are not a candidate for surgery because you can eat!! It is true that many lose weight, because they are afraid to eat, but many eat and suffer with pain. I did. My pain was very bad before surgery.
You definitely have to get another opinion on your condition.
In my case I was told that surgery might not mean 100% cure. I decided to go through with it- I could not live like that anymore. I did very well- no more pain. I had to have a stent placed to keep the celiac artery open - it was kinked by the ligament.
I have IBS too, but I can distinguish that from other conditions.
You are better off going to a major university medical center or Mayo Clinic.
Please get back to us if you make a decision to get a 2nd opinion!

You can definitely have MALS and still be able to eat. I know because I'm one of those cases. I do however get severe stabbing pains and nausea during and after intense exercise. Anything that gets my blood pressure up will do it, as well as sleeping on my right side or sitting too long. It is true that most diagnosed cases present with inability to eat, but it's not exclusive. A lot of what you're describing does sound a lot like SIBO to me though, which I've also had. I've taken rifaximin, got better, and then all the GI symptoms came back. Tried 2 rounds of antimicrobial herbs, stuck to the FODMAP diet, and now a soil-based probiotic and I'm doing much better with that. I'd definitely rule out SIBO because it can be cured without surgery. MALS also can upset GI functioning, because the celiac nerves are also being compressed. Usually that means pain/nausea, but IBS and SIBO symptoms seem to go hand in hand with MALS for a lot of people. It makes me wonder if a celiac plexus nerve block might be a good test for you.

For your sake though, I hope it is not MALS and is something else you can figure out because MALS surgery is no joke. I had my first surgery in 2015 and all they did was release the ligament laparoscopically, only to have symptoms slowly return about 2 years ago. There are multiple theories and approaches to this surgery, so it's all on the patient to research and decide which surgeon and method to trust. I would continue pressing your GI docs or find one with a little more curiosity and compassion, until you reach a clear diagnosis.