Median Arcuate Ligament Syndrome (MALS)

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.

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.

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.

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?

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!

She also had a positive provocative messenteric angiogram with a positive mals diagnosis with stenosis of the celiac artery. I thought it would be helpful to share that to my above message . Thank you all again!

Thank you for the insight my thoughts and prayers are with your family as well. I'm happy your daughter decided to defer school, I almost wished this happened in high school unfortunately it was her first semester in college:(. She's managing it well, but I sometimes I feel powerless because we're not in the same house, so I can't help her manage it. She calls me daily so that helps. We have to stay strong and trust in God, the healer of all healers

Welcome to Connect, @atjmoney,

I'm sorry to hear about your daughter, and glad that you've turned to this community for some support. I'm confident that Mentor @kariulrich will reply with some information soon. It helps so much to hear from others who have experience with the same condition. I'm tagging @artistgma @lmtuska @jamorris9 and others in this group, and inviting them to jump in with their insights, too.

@atjmoney, I've been reading that eating very slowly, and having smaller meals more frequently can help some with the nausea. Do you think the nausea and abdominal pain could perhaps be side effects of her medications?

Hi @worriedmom18, I am sorry to hear about your daugher and her MALS diagnosis. Some doctors are not comfortable with the MALS diagnosis or the surgery. It is a rare diagnosis and there has not been much if any substantial research. I would not hesitate getting a second or third opinion. I have heard that children do well with the laparoscopic approach, but I would ask the surgeon what their personal success rate is and how many surgeries they do a year. I know Mayo Clinic Rochester does MALS more cases than most. It is hard to figure this whole diagnosis out when there is a sluggish Gallbladder involved. Another resource is MALS PALS on facebook, there are a lot of parents that post there. I am more familiar with the open surgery, but will try and answer any questions you may have.

I use ginger for nausea, it is the only thing that helps. I recommend ginger candies, or ginger ail, Bruce Cost is the brand I recommend: http://www.brucecostgingerale.com Has your daughter tried drinking ensure? I understand how difficult it is when you cannot eat due to pain and nausea. I have had MALS surgery twice, and recently had a celiac block which has not given me 100% relief. I am going to give it a bit more time, in the past Tramadol would help, I would take one mid morning and one late afternoon, that way I could eat some without the terrible pain that comes after. Unfortunately, tramadol does not help with the nausea and can sometimes make it worse. I have always wondered if cannabis would be an option since Tramadol is considered addicting. I do not know anything about cannabis, maybe there is someone on here that can enlighten us both. I go to Mayo Clinic Rochester, Minnesota and I do not think they prescribe cannabis.