Median Arcuate Ligament Syndrome (MALS)

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.

Hi Mark,
Mine is a weird story. Nothing about my medical conditions is 'normal' or fit the profile. I just went to the er one night for pain meds cause it was really bad. They did ct scan and told me my arteries are narrowed and to see a vascular surgeon. I saw the chief of vascular surgery at a university hospital. I was lucky. I had no idea what to expect, didn't think a big deal. I was a special ed teacher and thought I would be back in a month. That was almost 5 years ago. It was about an 8 hour open surgery. ICU for 3 days then reg room. I was totally drugged up, don't remember much. The surgeon wrote and published a journal article on me since I was so rare. The diaphragm was not only crushing the celiac but also the SMA, which is extremely. It was a lot of work in there. My pain was gone but a very long difficult recovery. Then major stresses. My dad suddenly passed away and I was POA. I had 2 sisters who were extremely pissed and started 3 years of pure hell for me. My mom had beginning Alzheimer's and I was the one that would care for her when my dad passed, of course thinking that would be way down the road. She was all upset with my sisters, it was just terrible.
So the reason I say this is the stress during this basically killed my body. During this time, not even a year after first surgery my arteries narrowed again. I should have had a by pass but way to weak. Surgeon said I would never make it. So I got stents put in each artery. That held for awhile then, balloon. My original surgeon moved to another state. My second surgeon was good. I didn't know about the nerves and all that because I never researched or anything because I was taking care of my mother and dealing with them. I learned things on these sites. My mom passed and my sisters were taking me to court, basically my lawyer said to go because I had all evidence and I would win, but my body just couldn't take it so we settled in mediation and signed contract to communication. So sad. My dad said they would give me trouble, he was right. Anyway, The reason I tell you this is because I just got diagnosed with dysautonomia, POTS and MCAS. This is all from what my sisters did to me. I would have been able to go back to work and probably had the bypass so my condition is not from the MALS.
My surgeon now is from Mayo and he is awesome, but not to familiar with MALS. I may need to get back in contact with my original surgeon. He is chief of staff at Baylor College of medicine, but I know he will remember me.....haha
Well that is sort of my story summed up. Sorry this is so long. I never thought about the flying. I do have reports with dilation, and we were going to do celiac block, but all the dysautonomia stuff took over.
Well good luck to you,
Jill

Hi Shawnee, I live in Dallas. I just had robotic lapriscopic surgery on Wednesday. I am just starting third day post op so I can’t say yet how I feel cause I have all the pain from the surgery. My surgeon is older so he has done this before. He was very confident in what needed to be done. He told my family when came out that it was very successful. Another vascular surgeon was ready to assist but was not needed. They were ready to convert to open if needed but didn’t him after al. I will update as I progress. I believe I can tell that I am able to eat more and don’t have that after eating pain but as I said, I’m holding cmmenting too much till I am out of this surgical pain.

Hi Mark. May I add an important question to your list for the surgeon? Ask how the surgeon addresses the celiac nerve ganglia. If the surgeon does not remove it, or partially remove it, be very very careful. You can’t image how much worse things got for many who had MALs ligament release without addressing the celiac nerve ganglia/plexus. Many good resources to read and stories to hear on Facebook MALs Awareness group. Good luck to you!

@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.

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.

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 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.

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

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!