Median Arcuate Ligament Syndrome (MALS)

If you get on MALS PALS and join that, a closed face book group, they have an updated list of surgeons by area. I do know there is a Dr. Anton Bilchik in Santa Monica Calif. that has been recommended on that site. Hope that helps.

Does anyone know of a source list of surgeons with MALS experience? I am in San Diego and would love to find someone here. I do know of a couple of surgeons in Los Angeles, but I learned of them in very roundabout ways. Would love to know how most people find their surgeons. TIA!

Okay here goes. After a year of up and down pain and ER trips. The past 3 months of Dr. appointments, GI, every scope, ultrasound sound, CT scan to be done. Of course as all of you know to be told everything is normal. Until a visit to the ER when a Dr. there suggested to look for Mesenteric ischemia.
This test shot me to a referral to a vascular surgeon who then did an ultrasound. Who shot me a referral to a general surgeon. With a a diagnosis of MALS.
Here I sit in pain awaiting a consult in 4 days for what looks like a extremely scary surgery. I can't eat anything without pain!
I have lost a total of 27 pounds to date. 3 pounds in the past week. 5 pounds the week before.
Now I'm not a large woman to start with so I don't think losing too much more will be very healthy. I'm weak, tired and spend a lot of time in bed.
I want to know what questions to ask the surgeon. I have already had two really big scary surgeries in the last 2 years. I made it through those, I don't want to die from some darn strange stomach surgery.
HELP
Thank you in advance for any advice or comfort
Susan

@kariulrich I am also going to cardiologist to see about POTS....

Hi @kariulrich well I certainly have brain fog. I can't believe I wrote the question I answered. I wrote it 4 days ago and didn't even realize it when I was replying....oh boy, I am so embarrassed. I am on MALS Pals a lot and forgot that was my name on here. I need help obviously!!! I saw the pm and wrote you back. I need some sleep!!!! Have a nice holiday.

Hi @susanf you posted properly, so ask away! Would love to know more about you. My name is Kari, I am a MALS patient. Have had two surgeries a celiac bypass and a revision. Several celiac blocks. I also have an underlying vascular disease and connective tissue disease. I will do the best I can to help answer any questions I have or try to refer you to someone who may be able to help! Welcome to the group!

@mandyjunebug WELCOME! I am so happy you found our community and I understand completely what you are going through. It sounds like you need a good vascular work up, especially since you have had an omental infarction. There are several diseases that can mimic mals, but no matter what the disease or diagnosis, we all here have the same symptoms and we are always here for you. Food aversion is difficult for people to understand unless they have been through it. I get fear going to the grocery store, when a friend calls me up to go for lunch it is instant anxiety. The holidays are brutal and family and friends have a hard time understanding. Food is so social so that adds to the adversion. I have had two Mals surgeries, I also have a vascular disease that can cause symptoms. I know it is difficult to be your own advocate, but their are physicians out there that are patient centered and want to hear your opinions and thoughts. It is your body, you know it better than anyone. Don't give up until you find a physician who is willing to work on your team. We need their expertise to guide our care, however they need our expertise so they can guide us properly. You have a complicated history, and with your experience you will probably know more than most providers about MALS. I recommend reading what you can from quality sources, such as Mayo Clinic, Cleveland Clinic also you can use google scholar to find updated, peer reviewed papers. Feel free to post articles here , ask questions. This is a small group right now, but it is growing slowly and we all have been in your shoes! Again welcome!

Hi @jmmb I do not believe that MALS contributes to body aches and hip pain, however what I have found interesting is that many MALS patients also have FMD, EDS, POTS. I have noticed that on several online support groups. I know this was brought up to the vascular department at Cleveland Clinic but they did not believe there was a correlation. I do hope we see more research in the area of MALS in the future.

Hi @jmmb, I have MALS and body aches and horrible hip pain. I also have chronic fatigue syndrome so I figure it's probably that. The pain is getting worse, and at times the hip pain is so bad it is difficult to walk or stand.

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