Median Arcuate Ligament Syndrome (MALS)

Wow that’s a long time! Glad your surgery helped you. That’s wonderful news. I’ve been reading up a lot on MALS and gone on their official website as well. Mals pals is such a great source as well. Not that I wish this on anyone but it’s good to know there are others that can share their stories with me and offer me support as well. Be well!!!! Thankyou 😊🙏🏻⭐️

It took 16 years to get a diagnosis of mals and I found it by researching. Mayo Connect directed me to mals and I did a lot more research. There’s several Facebook Mals groups with tremendously great information and support. I had open surgery 4 years ago and no longer have mals, but I do have nerve damage in that area. Make sure you check for all vascular compressions. Hang in there!

So sorry you’ve been through so much. You’re right MALS is difficult to diagnose. However, seeing a vascular surgeon and doing the special ultrasound with breathing protocol is the definitive test for MALS. There are surgeries to relieve and eliminate your issues related to this. Also MALS pals on fb is a great source of support for you. I just joined recently and already feel their cheers of support and don’t feel so isolated. Hang in there. You’ll get through this. I’ll remember you in my prayers. 😊😊😊😊😊😊😊

I am sorry you are going thru all this with no success in finding an answer.
I have been diagnosed with MALS and have had 2 recent surgeries for it. I had a robotic lap in 2022 and open surgery Nov 2023. It took over 40 tests and procedures before being diagnosed.
MALS can be very difficult to diagnose, so it's important to find a doctor with lots of experience and to do your research.
Facebook has a wonderful page called MALS PALS. It provides lots of information and support from many people who are experiencing what you are going thru. They share their own experience with doctors and procedures and tests that have helped them find answers.. This page personally helped me diagnose MALS and helped me find a vascular surgeon to confirm my diagnosis of MALS. You need to be your own advocate unfortunately. The MALS Foundation also has a page that provides wonderful information and lists of doctors thru out the country who can help. Keep in mind that you may have to travel for this care. Because MALS is so rare you usually don't have anyone in your own area to help. I have traveled from Florida to Ohio for surgery. I'm 3 months Post op and hopefully on the road to recovery. Recovery after surgery can be tough and long, but your whole world can change for the good. It took me 4 yrs to finally figured out and lots of patience.
I hope you find help.

I have been searching for the cause of my pain for the last 5 years. It started with a hiatal hernia repair and TIF. There were complications along the way that resulted in me having another hiatal hernia repair two days after the first. More complications left me with an abscess between my aorta and esophagus. After a couple of times almost dying what I was left with was epigastric pain. It hurts worse after I eat. My heart rate will spike. It doesn’t seem to matter what I eat or how much I eat. The pain always comes. It has left me feeling pretty isolated and alone even with an incredible support system. Between the pain, nausea, hr spikes, headaches, weight loss and no answers, I was recently directed towards the possibility of this being MALS. I’m not sure if it’s the actual ligament causing the issue or maybe just anatomical changes that came from the surgeries I’ve had but it seems like a possibility. Really there aren’t a lot of other possibilities out there anymore. I have an appointment with the MALS team at UT Health in Houston in April and it cannot seem to come fast enough.

I had laparoscopic MALS surgery 2015 - done by a GI surgeon at a university hospital. The MALS ligament was cut.
I noticed the difference at once.
The recovery was smooth- some fatigue.
At 6 months symptoms returned. The celiac artery had never returned to normal shape and was compressed. A vascular surgeon placed a stent that worked well. I needed a replacement 2022, successful. The vascular surgeon said he can keep replacing them if the artery gets too compressed again.
If for some reason the celiac artery won’t function I would need open surgery.

Thankyou so much for your reply y

Yes that’s very true. Thankyou so much for sharing. And good for you. That’s so awesome. You gotta take the good with the not so good. The fatigue is annoying. But now I actually take naps if need be. And on good or better days I walk in my house and on mild days outside for a bit with my son! It’s so good to know there’s finally a name to all my symptoms. Very grateful for that as well as surgery that’s supposed to help a lot. 😊

Thank You! ❤️ You Got This!

Thankyou so much. God bless!!! Keep in touch. 😊