Median Arcuate Ligament Syndrome (MALS)

@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!

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…

@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 🌼

@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.

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.

Did Do you ever get any help

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

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

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?

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