Median Arcuate Ligament Syndrome (MALS)

I haven’t-But it’s actually a topic with a patient on Greys Anatomy tonight!
(Season 15, Episode 5@10/25/18)
It was very difficult to diagnose, and the young lady kept being told it was all in her head. I’ve been an RN over 30 years and have never met a patient with it.

I have been diagnosed with MALS for over. 7 years and just recently gastroparsesis. I am having so much pain between my shoulder blades I just can’t take it. This past weekend I took extra strength Tylenol like it was candy. No one can help me. I live in South Dakota. I have an appointment with my gastro doctor on Wednesday. I was dismissed by my vascular dr saying nothing has changed. I get sent away with nothing. I really need help. Who will listen or understand?

I’m so sorry to hear how hard this has been. MALs surgery is much harder than most surgeons realize. Most MALs patients have said similar things you said. Did you have open or lap? I’m guessing open by the length of stay in hospital. Also did the surgeon remove the celiac nerves or just cut the ligament?

I had lap 1 year ago with partial removal of celiac nerve plexus and am doing very well now. I eat without pain and am active and happy. So many unanswered questions are now answered after 40 years of stomach pain.
The recovery, however, even with lap, was way harder than I expected, 10 times harder than my C-sections were.
Pain was in front and, surprisingly, in the back. The doc said “We had to dig really deep”. So that kind of pain is normal. I took oxy at regular intervals the first few days, then alternated with Tylenol, then only at night, then stopped at the 1-week mark but continued with Tylenol for a month or so. Everyone (nurses and patients) says stay ahead of the pain, taking medicine before things start to hurt badly. Opioids are scary but helpful for the first week or 2, especially with open surgeries.

Nausea after surgery is pretty bad to severe for most of us, which I had not expected either. I was nauseated for 2 months, which seems average.
People who do not have nerves removed often have worse nerve pain because surgery “made the nerves angry”.
Sitting made my pain worse because sitting causes compression in surgical area. At 3 months post surgery, I got an elevating workstation so I could stand; that’s when I really started to feel better with less pain. Sitting caused pain even up to 8 months post surgery.
Fatigue was present for 10 months, which seems normal for most MALs pts.
Repeat CT is important post surgery (about 3-4 weeks) to be sure artery stayed open. Some people need a stent to hold it open.

Hang in there. Yes, it is much tougher than people realize but usually gets better. If you can’t eat or drink at all, it’s best to go back to docs for Eval and medical support. I hope things get better for you and hope you have supportive people to help you through this.

I have also been told that any surgery inside you will have a long recovery period, even if it is laparoscopic. 6-8 weeks to get less fatigued. I had pain swallowing too, since it connected with the diaphragm that held the ligament. I was given gabapentin that worked well. Took weeks though. I had immediate post op problem because I got too much IV fluid and got fluid in my lungs and low oxygen. Just rest and easy on eating. Our GI system is very sensitive and will go on strike! However- the major pain after eating is gone!

I was diagnosed a couple of months ago and my surgery was Oct 12. After a 6 day stay from hell at the Northeast Methodist Hospital in San Antonio, TX (which I wouldn't send my enemies there), I was released from the hospital Thursday of last week. Rough weekend but my main question is when does it start to improve. I want to take a painkiller but the downside of opioids is horrible. Any advice. I'm hardly able to drink fluids and still have no appetite. I'm close to checking myself back into the hospital cause I am not sure if I stayed long enough. Any help or advice would be appreciated. I'm a 43 year old Male.

Hi jdouglas, well it sounds like I’m right there with you. Fatigue, nausea and brain fog are wearing on me. I am a 59 year old female and my surgery was October 3. I too could eat right away but wish they would have restricted me to liquids. I took the advice I’ve seen here and ate small amounts but wish I would have gradually increased from liquids to solids. (Wonder if it would have made a difference.) I say that cause I feel like I am having a time getting my systems working again as well. Nothing really sounds good but I eat. I can tell my stomach is slower emptying and of course the rest of the digestion process is slowed. Surgeon suggested Senekot so I’m going to take that regularly till I think things are up and going on their own again. Talked to my PCP this weekend and she reminded me that even though the surgery was lapriscopic, it was still major. Think my lack of desire for food is because my taste seems off, which I assume is because of the anesthesia as well as the nausea, weakness and brain fog. So all that to say that I have resigned to the fact that my systems were basically paralyzed during the procedure and it is just going to take time for everything to wake up and get going again. My husband reminded me that my frustrations are probably compounded because I felt so bad for the months before. I’m just ready to feel better fast. 😊. Hopefully others here with more knowledge of surgery recovery can comment. Keep plugging along. We will get there.

I think I am one of the lucky ones. I was diagnosed within 2 months of getting a really bad stomachache. I had terrible pain most of the time, not just after eating. I lost 18 in less than 2 months (from 120 to 102). I have no other issues like celiac or ibs. I am a 60 year old healthy female living in Chicago. My surgery was 2 weeks ago and I could eat the following day. My question is, I’m having a difficult time getting my body to be happy eating again. Can anyone give me advice about how to reintroduce my system to eating? I have bouts of shakiness after eating, stomach cramping, bloating, etc. I have cut out dairy for now and staying away from anything spicy or rich. It seems that one day fiber is okay, then the next day, fiber is a problem. I am fairly weak given the weight loss and am looking for any advice out there. Thank you.

My symptoms were similiar. I could not eat without pain then finally could not drink water without pain. Looking back they did not look very long or hard. I had an endoscopy and colonoscopy and only had gastritis. Within a few days of those test they decided to take the gallbladder because the symptoms matched it the best. I got better after it was removed. That was about 6 years ago. There where a lot more symptoms this time and of course my gallbladder was gone. Not only do we have to find doctors willing to keep digging but we have to have the radiologist who draws attention to it. There are just so many steps along the way where it could be missed. So yes, I have wondered if my MALS started 6 years ago.

I should clarify that all the docs at Mayo were excellent. The ones I negatively described above were not from mayo and made up about 10% of all docs I saw. The majority of docs really care and try to help. It’s just that the ones who are not good are very hurtful when they mislabel and dismiss. Sorry for my negativity in the post above. But still important to advocate for oneself.

His name is Dr. Joseph Mills. There are a few good ones there if he isn't doing any.