Median Arcuate Ligament Syndrome (MALS)

Hello,
i was diagnosed having mals after a year of tremendous pain. Unfortunately i am not candidate for surgery and i am looking for answers, medical treatment, nutrition, therapy that we could do During this period doctors suggested i eat everything - preferably high digestibility food - but minced, or creamy food ( for example: carrot boiled and minced, the same with a plate of pasta or rice), and this avoid me from pain.
I eat little quantity, slowly ( minimum of 25 chewing for a bite), and not too hot or not to cold.
I cannot stand caffeine or alcool, is the same for somebody in this forum?
Thank you for answers and collaboration
Malvadia

Yes I’ve had surgery, and it was far more than MALS. My Celiac, hepatic, splenic arteries and abdominal aorta were all compressed by abdominal crura and musculature which had grown in physio-atypical directions, lots of scar tissue, plus my diaphragm sits low which was pulling on everything, including the Median Arcuate Ligament (all secondary to EDS). I had to self diagnose my EDS and the MALS, because they were both missed for decades (I’m nearly 60). I’m 6 weeks post surgery, and still can’t eat properly, still having URQ and flank pain and excruciating post prandial pain.

But am in BC, Canada, and no one here knows the first thing about EDS, gastroparesis, dysautonomia, abdominal compression syndromes, etc.

I had a decent vascular surgeon, but no one is following me. I feel like I’m still in real trouble.

Would love to know what to expect after this surgery, and when to return to hospital if they’ve missed something. Mind you, it took a full court press (20 trips to ER for over for a year; 5 years of trying to get multiple issues addressed, most of which haven’t been; GI issues are only one) and self diagnosing MALS to even be able to speak to a vascular surgeon.

I’ve complained to the College of Physicians, contacted the MLA, Patient Quality Care, the ombudsperson - all for naught. I ran out of ideas long ago.

SOS

Did Do you ever get any help

I had mals surgery in Jan. 2020. It was 16 years for me to find out what was wrong. I’d had every gi tests and sometimes twice. They thought it was gall bladder so I had that out. I finally gave up and went to a pain doctor. A radio frequency Ablation on the Splenic nerves gave me relief for 3 months. I had that done several times until the mals became so inflamed that I had to quit my job. I searched and researched and found someone on this site who directed me to the Facebook page Mals Awareness. I followed them for a while. I went to See Dr. Hsu and had surgery in January 2020. I knew my mals pain was immediately gone when I woke up. I am now looking into nutcracker as I have all the same symptoms except the knife stabbing pain that Mals gave me.

@woodspixie
I’m so sorry for your continued pain and misery. I’m a MALS patient myself. I just my second surgery to keep the celiac artery open with a stent.
It sounds like you still have problems with the celiac artery with that kind of postprandial pain.
The vascular surgeon would be the one to follow you. They can test again with a duplex ultrasound or CT angiogram.
You shouldn’t have to live with that pain- insist on follow up testing.

@kariulrich hello 👋🏻 I got evaluated by a vascular expert and said I have the symptoms but not the structures. I didn’t qualify for the blocker because of this and I have too many other non related symptoms of MALS as well. So surgery was not indicated in this context. He did noticed my bowels being dilated scattered.

I’m now focusing on trying to treat my symptoms with the recommendations. Hope everyone gets the help they need and prompt recovery to all if surgery is your plan of treatment. 🙏🏻blessings of healing 🌼

Thank you, thank you! I needed some encouragement. Happen to be back in ER, readmitted; they just have no clue what to do with me (and those like me) here- so every step is a major battle. I believe you’re right; CTA today shows celiac artery is still compressed (…at they very least), and I have granulomas in my lungs and liver that no one has ever worked up, pneumonia going on since Sep. They were going to send me home until I pointed out I’d die of malnutrition. Gastroenterology refuse to be involved in anyway, as do several other specialists. Have been considering going abroad… somewhere where physicians actually know something about conditions secondary to EDS…

@woodspixie -
It must be tiresome to have to deal with more than one serious medical condition.
You are correct in that you will be very malnourished if you don’t get more help with the celiac artery.
Can’t you request a consultation with a vascular surgeon since you are now in the hospital?
Instead of going abroad you could try to be seen at one of Canada’s university medical centers. McGill?
It’s often difficult here too to find doctors with MALS knowledge. One just have to press on- as you and I know it’s impossible to live like this.
By the way- I had my procedure 6 days ago and tonight was the first time in an eternity that I could finish my dinner plate and not only 2 bites.
Don’t give up- let me hear from you again while you are in the hospital!

How long ago did you have MALS surgery? And how long after did they find the problem with the Celiac artery? Has the stent been successful so far?
I had MALS surgery in May. They cut back the Ligament and all the nerves compressing the Celiac Artery. So far, I have had minimal relief from the surgery. My surgeon recently requested and I had a CT of the abdomen and Pelvis, CTA Abdomen and Pelvis both with and without contrast. I then had the Mesenteric Duplex Ultrasound. The velocity numbers were still high. The conclusion was that the MALS was gone, but my Celiac Artery went from being 50% blocked in March to now 75% blocked. They want to do a angiogram angioplasty to try to clear the blockage. If that doesn't work, they would do a stent or bypass. I have heard from many people on MALS PALS that the stents fail alot and was wondering what your experience has been so far with your stent. I'm very nervous and concerned as to what to do. Thanks.

@bfort
I had MALS surgery 1/2015. The ligament was cut as well as many of the nerves in celiac plexus.
6 months later the symptoms returned and I had first stent placed. They said the celiac artery was still very compressed due to the ligament pressure. I was followed annually for a while. The artery with stent was still deformed, but blood flow was good- until recently. Before another procedure a week ago I was more miserable than ever for a few months and lost weight due to not eating much. A new stent was placed. I’m still waiting to hear details next week.
Slowly I’m having less and less symptoms and can eat more now.
The surgeon didn’t guarantee a good outcome- just like they did not do at my first surgery. I never hesitated going ahead- there was minimal quality of life.
An open revascularization is another option mentioned that might be necessary.
I would do that too if this doesn’t work.
These decisions are difficult to make, especially if someone has other serious medical problems.
I’m 78 and I have other health conditions that might worsen and might make me a worse surgical candidate.