Median Arcuate Ligament Syndrome (MALS)

Wow! Sounds like my daughter except she isn't an athlete. She is a straight A Math major who had to defer her semester to the profound health change. I am anxiously awaiting a second opinion. They wrote her a script for pain relief but she is afraid it will hurt so she just continues to suffer. If we have any luck with our other medical specialist inquiries ill post. My prayers and thoughts for you both!

Hello,
My daughter had the ultrasound they determined the nerve was narrow and there was fibrous tissue around the nerve. The surgery was to remove the tissue in hopes of relieving the nerve. It was unsuccessful and we're back at square 1. The next phase is the full surgery, I'm a little concerned about the healing process. She's a college athlete and very anxious to get back on the court. Right now her eating has regressed less than 800 calories a day, not good. she's starting to have pain with exercise, any suggestions on controlling the nausea and abdominal pain. I'm looking at cannabis and other alternative meds. Your thoughts?

No worries. We will get her treatment expeditiously as possible. We have pending appointments with leaders in this area of medicine . The current surgeon just doesn't have a lot faith in the MALS surgery so we feel it is essential to get feedback from others. He also only does the lap version unless on the table something goes wrong. She has a sluggish Gallbladder and a stenosis of abdominal artery above 80%. Thank you for your concern we will keep everyone posted and thank you for sharing your story it is very helpful.

So let me know if I am getting to personal, but if she had a positive angiogram (showing narrowing I assume) did they try to do anything while in there? When you say wasn't enthusiastic about surgery working, did you also mean not enthusiastic about helping your daughter as well? If so drop him/her immediately. What did they say to do about gallbladder? With her in that much pain loosing that much weight it concerns me that this may be something that shouldn't wait. I am not trying to get you scared, I am just curious with her being so young why didn't surgeon think surgery would work?? Maybe because he is not experienced. When are you going for a second opinion? They can do a Doppler ultra sound before doing the angiogram to see how narrow the artery is. Which artery is effected? Maybe mine was more urgent because I had 2 out of the 3 arteries to the stomach not working.
When you say two sets of facts do you mean 1 the MALS and 2 the gallbladder by two different drs? Just seems confusing to me and I feel for you guys, especially your daughter. Is it you need a correct diagnosis? I understand putting your life on hold. Mine was for 3 years. Health wise it still is, but other things finally got better so that helps me deal with the health issues. She is to young to have to go through this. The positive is that she is young though and would have a better faster recovery, if that is any consolation. But again, I am not a dr. Just the weight loss and calorie intake is concerning. OH and I am a mom. My son had pyloric stenosis when he was 7 months old. 20 years ago it was an open surgery and a week in the hospital. Talk about worried....I was crazy......so I get it. Anything I can do to help just let me know.

We were given two sets of facts ;one the surgeon said despite the very positive angiogram he wasn't very enthusiastic about the surgery working or helping my lovely daughter. She recently was told her gallbladder though not diseased isn't functioning properly with a score of 18.5 . So we are taking our daughter for a second opinion at another teaching hospital . It is an awful condition and I can't imagine how you function with the pain. Our beautiful daughter just graduated high school in May at the top of her class with college as a Math major weeks away. Now she deferred her admission and awaits a resolution so her life can be resume again. She is such severe pain. She has so much pain after she and eats so little not more than 800 calorie a day with great effort. Thank you for sharing your experiences and for your kindness means the world to a nervous /worried mom.

Hi @atjmoney. I feel for your daughter and your family. What did the laparoscopic surgery do? Was it to widen the artery? Was it like an angiogram where they go through her groin or arm? The amount of weight she has lost is concerning. Did they want to do an open surgery with her instead of the stent? Since she is so young, I would think the open one, but I don't know all the facts. I had stents as well and that was not too bad. Small scar on inside of my upper arm. I did have a hematoma and have to have a second surgery that day, but that was me, so I stayed an extra day or two.
You are right to get a surgeon who has performed these types of surgery before. Do your research. Have they done the Doppler ultra sound to see how much it narrowed? I don't know what advice to give since I don't know her details and I wouldn't want to say anything wrong, but feel free to ask me anything.
Good luck

My daughter is an 18 year old college student. She was diagnosed with MALS from Kaiser, she was treated with a laparoscopic procedure three months ago, the symptoms subsided. She began training with her college basketball team this week and the symptoms flared up. She's lost 63 pounds because she can not eat, over 1/3 of her body weight. She played basketball since a young age and was very healthy baby and child. I'm lost as parent. Her father and I opted out of the stint being placed in her because of her age and the invasiveness of the surgery. I'm requesting an out of network vascular surgeon because the prior specialist has only treated this case one time. In Heinz sight we should have gotten a second opinion, but after 20 plus appointments, during her first year of college, we were just happy to have an answer, I feel we ruch

Thank you for sharing your experience and medical information. We go for a second opinion soon at another teaching hospital. I appreciate everyone"s feedback it will help my daughter and I navigate this difficult condition with less fear and more confidence. Praying you feel better soon and get back to teaching.

Hi I have had open surgery for celiac and superior mesenteric arteries. I had extreme pain, thought it was bad stomach issue. I have had ulcers, and stomach issues. I went to er to get pain relief and dr insisted on ct scan, good thing. It showed my arteries were narrow. I had no idea what that meant. He said I had to see a vascular surgeon. My primary referred me and next thing I know he tells me I need this major open surgery now. My peak systolic velocity for both arteries were off the charts. I had no idea of how serious this was. I was a special education teacher and told the school I would be back in a month, that was Feb. 2014 and I am still suffering and not working. During the surgery they found they were compressed by my diaphragm. Surgeon said this was very rare, and to have both arteries. He published a paper on me. Surgery was successful. I did get some relief after the surgery. I also have chronic fatigue and the surgery brought it out of remission. Went back in July of the same year and they were narrowing again. My dad passed away suddenly at this time, this was extremely difficult for me and I basically didn't 'hear' they were narrowing again. My mom had beginning dementia. I was POA, sisters weren't happy about that, lead to major stress. I was always the one that was going to take care of mom. She got worse after dad's death. My health just spiraled down. I was taking care of her making sure she was eating and all that, sisters didn't do anything so I really had no recovery time and that didn't help. I then needed another surgery. They wanted to do and open surgery, but they knew my health would not allow it. I got 2 stents put in Sept. 2015. But during all this I felt horrible and went to a naturopathic dr. she tested me for sibo and it was positive. Couldn't get the meds, way to expensive, took almost a year to get them, tried them didn't work. Also had an ulcer during this time. (Oh I wonder why)ha ha. Anyway it was hard to get into my GI dr. Was scheduled for another endoscopy and my mom, who was living with me, had a stroke. She passed a few days later. So again I put my health on back burner. My primary wanted me to see a gi doc consistently and went to another. He was saying that he can't get rid of the sibo due to the blood flow of my arteries. A vicious cycle. He really didn't treat me. I then had an angiogram and they said they were ok. They are patent, but still narrowed. Went to a great GI. I was tested positive for sibo on three tests during this time. She started to treat sibo. I got the Xifaxim, eased up a little but like 2 days after all symptoms back. After doing tons of research I learned that you get tested take the meds, then must get retested to see where the levels are at and so on. She was leaving the practice and I was moving and she wanted me to go to Mayo.
Sorry so long, but this is really summed up of it all. Now I am at Mayo. They are doing a lot of testing. I was also referred for the vascular and was called for appointment, but had no insurance at the time and could not afford to go. I thought they look at total picture, but they asked me if I was also going to make an appt. with vascular dept. I told them right now the SIBO is killing me worse. I thought they would both be talking to each other. My surgeon said I was basically cut in half and everything was out on the table. Now with that said, there is no way that my anatomy is not altered. Plus the blood flow factor into the stomach to keep it alive.
well they did a bacterial overgrowth test. If I had known what they were going to do I wouldn't have done it . It was a glucose test for only 2 hours. All published works shows that you need at least a 3 hour test and it needs to be done with lactulose. The glucose does not get to the last 12 to 15 feet of the small intestine. and right after the second hour is when it will hit the colon. My test said negative and clinical correlation. I emailed my dr. about this and she didn't address it. I have had 3 positive breath tests for SIBO, my symptoms are even worse, there is no way that I don't have it.
I also am getting more chest pain and that concerns me about the arteries. From one month to the next, it can and has changed. May my ultrasound said patent, but sever stenosis. Mayo dr. said then blood flow is fine, surgeon said patent. Yes I don't need a surgery, but it is still sever stenosis. I am tired of being my own dr. and doing all the research. It is hard sometimes to distinguish the pain from the sibo, or the artery or an ulcer at this point. I continue to try and learn as much as I can and I am hoping mayo will help me. I believe it is mostly the sibo but I need a regiment for the antibiotics and possibly herbal meds.
So has anyone with this vascular disease also been diagnosed with SIBO, and if so are you at Mayo and who is your dr.
Again, so sorry for being so long, but wanted whoever reads this to kind of understand my situation. The CFS, SIBO and Vascular .

Thank you, everyone! We are just exploring our options before we proceed with the surgery. Hearing people's concerns and experiences help us wrap our head around all the possibilities. Thank you.