Median Arcuate Ligament Syndrome (MALS)

Hi Lisa,
My 18 yo daughter was recently preliminarily diagnosed with MALS after several years of testing and pain. She also has a congenital anomaly of the anatomy of her duodenum. She has always been slender, but a couple of years ago began to have issues with vomiting, significant pain, and has lost a significant amount of weight. She is 5'7" and hovers between 85-90 pounds. She is in pain all the time, and her doctor has said she will need to have an NJ tube if she loses more weight. She is headed away to college in a few weeks, so I am even more concerned since I won't be with her.
We have been seeing doctors at Johns Hopkins All Children's Hospital in Florida, but I am thinking we need to go to a team with significant experience in MALS. Do you have any insight you could share? Thank you in advance!!

Hi @jenno and welcome to Mayo Clinic Connect. Sorry to hear that your daughter is going through this, just as she is beginning to spread her wings and start college.
Have you looked into Mayo Clinic in Jacksonville? https://www.mayoclinic.org/diseases-conditions/median-arcuate-ligament-syndrome-mals/care-at-mayo-clinic/mac-20505015

@jenno - welcome to our MALS group!
I had surgery for MALS 2015 at MUSC, Charleston, SC.
Successful so far.
As you have realized, not all major institutions are considered experts in MALS surgery.
Why not try to get seen at Mayo, Jacksonville, FL?
I found myself lucky to have first been seen at MUSC GI department at Charleston, SC. And referred to their GI surgeons.
After 6 months I needed a stent to keep the artery open- also an excellent vascular surgery department. I have been fine for 7 years!

Hi: My heart goes out to all of you who suffer from this difficult and life altering illness. I've been live'n the nightmare since 2014. It certainly makes you think the person is right who said that, rather than being a rare disease it is really only a rarely talked about disease. Before I can get my second surgery, I need another celiac plexus block. I am just wondering if anyone has used any pain doctors in illinois for this injection?

Hi i recently learned about this disease that matches up so perfectly with what I have been experiencing for 4 years now. Ive lost 46 pounds, and I am 6'3 and male, and was very lean to begin with.

Besides the stomach getting super full right away and the constant pain and nausea and burping, did any of you ever get very terrible dizziness, light headedness and almost faint after eating.

After eating I can feel my pulse in my temples, my mouth and jaw and it feels likes its pounding away while I almost pass out.

I havent been able to find a good list of surgeons or Drs who know about this and can test for this, and what are the best tests to get done?

Really appreciate any answers, I honestly never thought I could go for this long like this. Humans can tolerate a lot more suffering then I imagined

Hi, I am sorry you have been dealing with this for so long! I don’t know if dizziness, lightheadedness, and almost fainting can be caused by MALS. However I do experience these symptoms as well form something called POTS(Postural Orthostatic Tachycardia Syndrome) which is a common comorbidity of MALS.

As far as I understand there are 3 test that can be used to diagnosed MALS the first 2 to being a Doppler ultrasound with breathing protocols and a CTA with contrast and with breathing protocols. The other test being a celiac plexus block, which is usually used after a CTA and/or a Doppler to confirm a diagnosis. However a celiac plexus block if successful combined with clinical evaluation can be diagnostic on it own, even when a CTA/Doppler are normal because MALS can sometimes have a neuropathic presentation.

I personally just had to go to doctor after doctor till I found one that finally new about MALS and who finally took me seriously. So unfortunately the only thing I can say there is just keep going till you find the right doctor. Also I am not sure how helpful this is but there is a list of MALS friendly surgeons on the national MALS foundation website. Not ever doctor on there is going to be the right fit of course but it may be a place to start. It unfortunately won’t let me post the link to the list but if you google, National MALS Foundation, it should come up and list should relatively easy to find on the website.

@ally2104 , I noticed that you wished to post a URL to a web resource with your message. You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe. Clearly the link you wanted to post is not spam, so allow me to post it here.
–List of MALS Surgeons https://www.malsfoundation.org/_files/ugd/956de6_16725e2b0eea4f4e849bc649068ac4ec.pdf

There is also 2 Facebook pages with so much information regarding MALS.
The top of the pages under Files, has lists of surgeons, and so much more helpful information.
You can hear first hand from MALS patients who experienced the different types of surgery available in additional to the planning, and recovery of the MALS surgery. It is a very difficult surgery and your must be prepared for the long recovery process. But recovery is very successful in most cases. Everyone is different. There is a Dr Hsu in Connecticut who has done over 700 surgery's. You can send your tests results to him for a consultation in Connecticut is too far. I had my surgery in Naples FL
I had my Robotic Lap surgery in May, and just starting to feel better but am hopeful things will continue to get better. Don't give up. Be your own patient advocate.
The Facebook pages is MALS PALS and MALS Awareness Community

Thank you Ally, and thank you Lanni for the response and the info with the MALS site. I really appreciate it.

I will try and reach out to Drs from that site.

This has been so eye opening to me, I was always extremely healthy and would never go to a Dr, and now that whatever has happened to me happened, its so scary to see how many Doctors just absolutely do not want to deal with it, and will not be bothered to do any extra work or try and help.

For the Doctors who do go above and beyond to find out whats wrong , I salute you and hope to find you, and for the people on these forums that go out of there way to answer questions or give advice, please know that its such a great thing you are doing.
Just a little push in the right direction and a positive comment can help someone whos been suffering for way too long.

Thanks again

I recently was diagnosed with MALS after going through several tests with my primary care and gastroenterologist since 2018. I am a 46 year old female and have no idea how this was never caught before, but from everything I have read this illness is like a process of elimination. My CT last year showed a thickening of my median arcuate ligament of 16mm resulting in a greater than 50% stenosis of my celiac artery. I was referred out to a vascular surgeon and after he reviewed my scans and all the notes, he told me I had MALS. After I sought a second opinion from a Dr. who specializes in MALS and went through their MALS protocol testing, not only is there a compression on my celiac artery, but I have a severe compression of my aorta as well. I had been experiencing pain after eating, difficulty breathing when doing exercise, general fatigue and not being able to fall asleep at night. The nausea is the absolute worst! I have lost almost 20 lbs since the beginning of June. I am scheduled for open MALS surgical release on 9/26. I was advised by my surgeon that due to my previous abdominal surgeries (I still have mesh in my abdomen from 2 previous umbilical hernia surgeries and lots of scar tissue) and the severe compression on my aorta that I wouldn't necessarily be a good candidate for a laparoscopic approach. My surgeon thinks the risk is too great. Has anyone had the open release done? If so, what was yoru recovery like?