Median Arcuate Ligament Syndrome (MALS)

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?

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.

Hi annief
Glad to hear you're on the mend and the surgery was a success. Lets hope the good news continues and you continue getting better. All the best from way over here in the UK.
Mark

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.

I took Zofran occasionally. Crystallized Ginger helps too.

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

Before surgery, I did not take anything. After surgery, Mayo nurses used essential oils: peppermint and lavender. And Zofran. But that really dries you out. Not good if you’re already dehydrated. I’m sorry I don’t have more tips for the nausea.

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.

Glad it’s hellful. One more important thing for recovery: avoid sitting at all costs and lay down frequently, even if only 10 minutes here and there. Sitting causes more compression on surgical site. I got an elevating work station at 3 months post surgery and that’s when the pain really started to subside and the healing speeded up. 1 year now and I still stand at work rather than sit. I probably always will because they can’t surgically raise the diaphragm :).

@sclindajanssen, this is so encouraging and I will be referring back to this as I do other posts. Others have said the recovery is long and I kind of understand it now. My gallbladder removal was lapriscopic too but this is much more involved. My doctor did addressed the nerves. I am optimistic but can see I will have to be patient.