Median Arcuate Ligament Syndrome (MALS)

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: 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?

@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 @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

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
I had robotic lap surgery for nMALS 5 weeks ago. The surgeon cut the Ligament and cauterized the nerves surrounding the 3 nerves off the Celiac artery.
I had lost 40 lbs because I couldn't eat, drink anything, or exercise because of the pain after eating. I had my gallbladder removed thinking that was the issue in last Nov but it wasn't.
I had 20 various tests to eliminate any other diagnosis before MALS was confirmed by my surgeon.
Surgery is really tough and a long recovery. But I am eating again very slowly with smaller portions throughout the day. My pain from MALS seems to be gone, but I still have surgical pain because of cutting the nerves.
Each day gets a tiny bit better so I'm hopeful things will be better soon.
If you think its nMALS or MALS, Facebook has a few great pages that was very helpful. MALS PALS is one and the other is MALS Community Awareness.

Hope this helps.

@kariulrich

Hi,
I have had surgery. The surgery didn’t work 100% They only thing that got better was the vomiting. I haven’t vomit as much as I did before. But I still get pains after eating and now my nose and face get red after I eat then the pains start. Doctors are now suggesting celiac plexus block. But doctors believe it’s with my nerves. I went to Mayo Clinic they didn’t find out we what’s wrong with me. I was there for a week and left with no answers. They took so many test but don’t believe I had MALS. I was also there to treat my ulcerative colitis but they did tests and gave me medicine to go home with. I was in the hospital two weeks after my trip from Mayo.

My 16 year old lost a little weight due to being in Indoor Track which triggered the pain to be worse than usual. I feel it is through weight loss that it causes a major flare that once you get to that point, you can't eat, and the MALS takes on a life of its own until surgery.

PLEASE HELP! From Albany, NY
My 16 year old daughter is 56 days away from MALS and Nutcracker Surgery in Baltimore, MD, but is losing an unhealthy amount of weight due to MALS pain - lost 16 lbs in the last 6 weeks - now is 110 lbs. She is in so much pain, and we've been to the ER 2 times in the last week to get her fluids and request a feeding tube. Her GI Dr. doesn't feel she needs a feeding tube, but she is not getting any nutrition, or fluids due to pain. Her pediatrician won't touch her diagnosis, neither will ER Drs. What, if anything can we do to help her get through the next 2 months pre-surgery? I feel that the Drs here have such a lack of knowledge, and don't have any compassion to help, they just want to hurry us out of their offices constantly.