Median Arcuate Ligament Syndrome (MALS)

Who was your surgeon?

Who is your surgeon?

@dwoody59 I'm joining Amanda in welcoming you to Mayo Clinic Connect - MALS group. I found this amazing site when looking for information on the rare MALS condition.
I'm so sorry for what you are going through - I have been there. Amanda posted a couple of very good links.
Can you tell me why you are not a candidate for surgery?

Hi @dwoody59 and welcome to Mayo Clinic Connect. Celiac artery compression syndrome/ Dunbar disease is also known as MALS so you will see that I moved your post to a very long standing discussion with many members engaged in conversation about the very same condition. There is a lot of support surrounds this condition.
Median arcuate ligament syndrome: https://rarediseases.info.nih.gov/diseases/12308/median-arcuate-ligament-syndrome

Have you found any locally at all?

In 2006 I had middle epigastric pain, which radiated to my left side under ribs. I went thru years of testing. Pain meds even went to Cleveland clinic. No one had a answer. Finically after years 2016 I was sent to a vascular doctor, he ran MRI. Found I had a rare disease called ciliac artery compression syndrome/ Dunbar disease. I had lost to 89 pounds. The only cure is surgery and I am not a candidate. Today the pain is worse. And gets worse after eating. It keeps me up all night. I’m weak. I do not like pain meds. I’m on a low dose. And it makes me sick. This causes my blood pressure to raise really high , I get tightness in my left neck and jaw. Pain in my left chest area. But there is nothing they can do. But want to throw pain meds at me, which makes me mad.

I didn't have the same MALS pain or stomach problems for around 3 years. Then I started having the same sharp, deep pain on my right side under my ribs after exercise or in the morning after sleeping. I really didn't suspect a recurrence until I started having bouts of nausea as well. None of this was as severe but it started to interfere with my life.

There is some debate in the medical community (and thus patients) about whether MALS is ischemic (blood flow), neurogenic (nerve damage) or both. I would say the consensus now is that typically both are involved. 10-20% of the population have celiac arterial compression by the median arcuate ligament but don't have this syndrome. In my case, the first surgeon didn't cut back the ligament very much or remove much nerve tissue, so I still had compression and then pain as nerves grew back and were compressed along with the artery. At least, that's the theory of my 2nd surgeon. She felt very confident removing band of nerves and trimming back the ligament farther would fix me for good.

If you're feeling symptoms again you should probably seek out a MALS knowledgeable GI specialist or surgeon so you can get the tests redone. Or go back to your first surgeon. It could be something else of course, but no matter how confident the surgeon is, MALS can come back and need additional interventions.

As I understand this surgery, it cuts the median arcuate ligament that is putting pressure on the celiac artery. There is usually immediate relief when blood flow is restored.
In my case, symptoms returned after 6 months. The artery was still kinked and could not open up. A stent was placed to keep it open. After 6 years I’m still fine.

Thank you for your reply! Did you get complete resolution of your symptoms after your first surgery? And if so how long did that last before it came back?

Mine came back, but it was much less severe. I had a 2nd surgery and the surgeon found a "band of thick neural tissue" around the artery which she felt confident was the cause of renewed symptoms. I developed gastritis 2 months after this surgery which is better but not completely gone, so I worry in the back of my mind that it's still MALS and debate whether I should try to get a follow up mesenteric ultrasound.

I had surgery over two years ago which was successful and I got immediate relief from the majority of my symptoms. now I am starting to have the same symptoms again and I am nervous that it is back. When I had my surgery my surgeon said that bec of the specific way he operates it is not possible for it to come back. Does anyone know anything about this or have any experience with it?
Thank you!