Median Arcuate Ligament Syndrome (MALS)

Check out Mals Awareness on Facebook. They’re very helpful

@annief
Thank you for your kind words.
I’m very happy that you have recovered from your surgery!
When I first started my journey to find help for my abdominal symptoms I was a mess! Nothing made sense. Doctors locally could not help me so I went to Mayo Clinic. Even there they were confused, but knew something was wrong. Eventually, it turned out that I had two unusual problems. One was MALS and the other was an autoimmune unusual condition. I had the MALS surgery first and later I was treated for the autoimmune condition.
I was fine for some years until a couple of years ago when I thought the autoimmune illness was back. I guess it was a coincidence that MALS symptoms also returned.
I now have an amazing internist- he helps me plan what to do to get better. I tried another GI in a neighboring city, but it didn’t work out- ended up seeing PAs all the time.
My internist then referred me to another GI with excellent credentials- equals long waiting time. It was worth the wait- I just had an endoscopy. A few days before I had a vascular procedure to place another stent in the celiac artery- seems to work well.
My internist also referred me to this vascular surgeon.
As you see, I started over with new specialists.
If you have new GI symptoms try to find an excellent gastroenterologist. Do you have a primary care doctor that can help you search? Your best bet is to go to a university medical center. Many doctors, specialists too, don’t know much about MALS. They have to be able to know what might be new MALS symptoms vs other GI problems. For example, my new GI doctor recognized that many of my symptoms may clear up after the stent was placed. However, one symptom worried him and it did not belong in the MALS related symptoms. The concern was cancer, that’s why the endoscopy. Results good, still waiting for pathology.
I hope I have encouraged you to find new doctors, either by yourself or with a primary care doctor helping you.
Either way I think you should go to a university medical center- your best chance of finding competent specialists.
Let me know what you plan to do!

Ingegerd, your posts are so encouraging to me. I found this blog when I was diagnosed in 2018. You have been through a lot and yet your determination is inspiring. I am glad you are still posting. I recovered after robotic lapriscopic surgery and have not been on the blog much. Recently I am having some gastro problems. I am not thinking MALS yet. I’m wonder if you have had the same doctor all this time? If I have to go down that road again, I believe I will need to find a new doctor, and the thought of that os overwhelming.

@lasirvent
I had laparoscopic MALS surgery.
I was aware after the first stent placement that the celiac artery was still deformed from the ligament pressure and that the stent also took on some of that abnormal shape. Blood flow was still good until recently. It lasted 7 years.

Was your mals surgery open? The ligament needs to be cut all the way back to the spine or it will grow back. I haven’t heard of any successes with stents but that doesn’t mean they don’t work long term. I had a successful mals surgery in Jan. 2020, but am looking at pots and Nutcracker as I have all the pain (except excruciating knife stabbing pain -mals) I had with mals. My epigastric area starts squeezing the minute I move and only gets tighter throughout the day. Vascular compressions are so hard bc it seems they all present differently (somewhat) in different people. I hope you can find answers.

@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.

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.

@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 🌼