Median Arcuate Ligament Syndrome (MALS)

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.

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.

Hi @annief
Hope you don't mind me asking, but was there a major issue with your gall bladder? I only ask because I too had mine out in the hope it would relieve the pain, which it didn't. It points back to what I said in an earlier post in reply to @kanaazpereira and the fact it's a condition of exclusion. How many people have had unnecessary surgery before they get to the MALs diagnosis?

I am so sorry to hear how they treated you. That’s terrible and hurtful. Unfortunately, many, maybe most, of us with MALs have been treated this way. In the notes a couple docs wrote “anxiety” for me after they dismissed me. Anxiety has never been an issue for me. I was just really sick! Others with MALs have also been labeled with Munchausens and by proxy or anorexia nervous. Some have described medical kidnapping (multiple MALs people from same facility). It’s a real problem. Some docs want evidence for medical diagnosis but need NO evidence for psychological diagnosis, which they use as their wild card when they don’t want to admit they don’t know.

Patients must educate themselves extensively about MALs because many doctors don’t know about it. I’ve searched medical journals but the best MALs info came after surgery when I joined Facebook group “MALs awareness”. They have educational info in the files and learned more about comorbities such as pots, ED, dysautonomia, some of which explained most of the weird symptoms I had. I would recommend you join that before your next apt.

So glad you were assertive and asked questions. It’s hard to find competent MALs docs. Unfortunately, the newest info on MALs is not in the research journals, and that’s all they read.

The MALs awareness group has a list of doctors people have seen for MALs. Dr Hsu in Connecticut is the number 1 expert on MALs surgeries. They all love him!

I wish you well!

What is the doctors name who became Chief of Vascular Surgery at Baylor in TX? I’m looking for a second opinion.

Hi Jill
First let me say how sorry I am to hear about the passing of your parents and the zero support you got from your siblings. At a time when you needed them most they weren't there. Please don't feel you're alone and certainly don't feel your story is weird and your condition isn't normal. When I read your symptoms my jaw dropped, I couldn't believe what I was reading; it was like it was written for me. It seems me and you are at the same stage. Did you ever think that it might be the MALs that has given rise to your dysautonomia, POTS and MCAS? You will understand why I say that when you read the following.

I have always suffered from abdominal pain which would come and go. Then 10 years ago it came back with a vengeance and like you I thought it would be over in a few weeks. It became evident quite quickly that it wasn't the same as before as the pain intensity just kept on increasing. I was in so much pain I barely left the house for the first 3 years; I couldn't even stand up straight. The specialist checked for everything else and even took out my appendix and gallbladder which had no effect on the pain. After 10 years of pain and suffering, it was a young immunologist who suggested a angiogram which show up MALs and stenosis of the left gastric artery, It was a year ago that I started having trouble with food. I lost over 12kg or 25lb in less than 4 weeks. I really didn't want to lose any more weight so experimented over the next six months and found that if I eat a meal everyday the pain accumulates in correlation. One meal being a main meal of meat with vegetables. Below is food intake and symptom correlation:

1 meal each day for 3 days in a row causes an increase in pain on the left side and tiredness.
1 meal each day for 5 days in a row causes significant increase in left side pain spreading from front to back, hot flushes, extreme lethargy, appearance of rash on one hand.
1 meal each day for 7 days in a row causes intense crippling pain on left side front and back, hot flushes, total exhaustion, hand rash now on both hands, pain in elbows and top of right foot.
1 meal each day over 10 days in a row causes intense crippling pain on left side front and back, hot flushes, total exhaustion, confined to home and in most cases confined to bed, severe hand rash on both hands, pain in both elbow joints, pain in both knee joints, severe bone pain in femur bones, severe bone pain along wrist bones in both arms, bone pain down right shin bone. Pain in both feet which became extremely intense as soon as I put a foot on the floor. Significant pain in the right side lower ribs and pain across the pelvic girdle. An intense chest pain that radiated to the back in between the shoulder blades. Blinding headaches with some headaches being photosensitive. Along with the pain comes the nausea, constipation, mental confusion, excessive sweating, and problems sleeping. I performed this test 6 times over the last year and every time it has followed the pattern above. Now that's weird!

With your symptoms and the fact you suffer from dysautonomia, POTS and MCAS has shed light on my symptoms. I am ANA and Anti Ro positive which sometimes means there is an auto immune disorder. I was checked for the more common like Lupus, which was clear. Now I have something specific to go back with to have them check. Is it just coincidence that we both suffer auto immune disorders or is MALs the common thread? I can manage the awful abdominal pain and sleeping on my right side for the last 10 years; it's the severe chest pain on top of it all that drags me down, it gets so bad I feel my hearts going to malfunction. For the last few weeks I've been monitoring my heart rate overnight to see why I can't sleep properly. It fluctuates so much it looks like I'm doing a workout in my sleep. I will be happy to post a graph if there is someone that knows a little about sleep, heart rate and o2 saturation levels. At least I know which foods are triggers and which can be eaten without fear. It's not just about what foods cause the pain it's more about the quantities you consume.

Keep going Jill you have already helped me. If we all keep talking and sharing maybe we can get the doctors and specialist to listen and investigate things that are outside the box. If there is a link between MALs and Auto immune disorders, maybe it's the link they need to understand MALs better.

Hi @sclindajanssen
Thanks for the info, definitely something he needs to address. I had a rather tumultuous consultation with a gastroenterologist who gave me the diagnosis. 10 years and I finally had a diagnosis especially after being made to feel like a hypochondriac, it was even suggested I had Munchausen at one point. The consultant made a sweeping statement saying she had reviewed the angiogram, but doesn't think the MALs is the cause of the abdominal pain and the organs are getting enough blood from an alternate supply. If I had not been on this website I may have just left it at that, however I had learnt a lot before our consult. I simply asked her what the mean velocity was for the artery. I've never seen a professional flap so much or go bright red as she did. I asked if she had measured using doppler flowmetry (which I knew they had not) or was she making an assumption. To which I got no answer. Just to highlight there are some professionals out there that don't have a clue.

Do you recall if you took everything for the nausea? I was so week and light headed today, my sister took me to the ER. They said I was dehydrated and gave me two bags of fluids. They told me to eat and drink more. Lol. Guess I’ll call my doc tomorrow and see if I can get anything. Don’t really feel like eating and drinking when you are nauseated.