Median Arcuate Ligament Syndrome (MALS)

HEDS?? Hypermobile EDS???!!! I have that. May I ask why you are not a surgical candidate? Is it due to poor healing? I would love to hear more about your experience if you would not mind sharing it with me.

I agree with you 100 percent!! MALS patients should consult a dietician before and after surgery ... and if not a surgical candidate a dietician can help. So many of us suffer from malnutrition without even realizing it.

I have MALS too but mine is due from having HEDS and I cannot have the surgery

Hi Kari,
What symptoms do you still have to deal with? I’m confused about what my body is reacting to. The surgery eliminated the horrible pain after meals, but for years I also have pain in that area after my gallbladder was removed. At the same time I had the excruciating attacks of pain that I now realize must have been related to MALS. On top of that I developed autoimmune illness of my entire GI tract, now healed.
I think it would have been helpful to have nutritional/ dietary advice. There were so many foods I avoided and couldn’t eat. I’m actually surprised not one physician ever brought it up. In addition- living with a chronic illness when you appear well is very frustrating.

Today I have been thinking about support from friends and family? Outside this group, do you feel you have the support you need? Many of us still struggle years after surgery with symptoms, I know I have. I am so grateful for the surgery, and do not regret it at all, however I find I have not received the aftercare I needed from my healthcare system. I believe so much more can be done. Would love to hear from others when you have a moment.

@jmmb how are you doing? I have been thinking of you.

Hang in there. The diagnosis has been made which can be the hardest part. Now it's getting prepared for surgery. Try to find a surgeon with good experience with MALS. There are those who believe in the Lap method which is less invasive but can present issues later on or there is the open method which allows them to do more with the procedure if needed. I myself had the open method as the ligament was literally wrapped around the artery numerous times. Both are viable options but will needs to be discussed. I did well but was long recovery. Have other conditions as well that have complicated things but now able to eat more volume. Again, hang in there...it does get better.

Thank you for the warm welcome. I’m nervous but hopeful that I can manage this. I’ve been keeping a food and activity journal trying to figure out a best practice until I get some more answers. These conversations have been very helpful to read.

Welcome Jessica! Good to have you here! Sounds like you have had a long road to diagnoses! The pain can be so frustrating, especially after eating and exercise! For me that continues to be a problem, although surgery gave years of being mostly symptom free! Please ask any questions!

Hi All. I was just diagnosed two weeks ago. I spent 8 days in the hospital and had so many tests but MALS was the suspected diagnosis from the initial CT scan in the ER. I’ve have these recurring episodes of gnawing burning pain with eating that make me avoid it every few months for the past few years, along with almost daily nausea and some other issues that most doctors just wrote off as nothing, an ulcer ( none ever showed up), lady problems... so finally having a diagnosis is nice but I’m still lost. I’ve been reading and reading and reading. I’m in Delaware and I want to find a specialist. I’m meeting with a gastro in 2 weeks and one of the 12 doctors on my hospital team next week. But this was all new to them as well. It’s nice to find this page ( I saw it on the foundation website.) Thanks for any o do and support.