Median Arcuate Ligament Syndrome (MALS)

@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

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

@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

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.