Median Arcuate Ligament Syndrome (MALS)

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.

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

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

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!

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.

@susanf, I have a question for you if you don't mind. Are you going to a consult with a vascular surgeon? MALS involves the ligament, mesenteric ischemia can be different, or a result of mals. The most important thing is you want to make sure you have a knowledgeable surgeon if indeed it is MALS.

How long does it take to get approved on the Facebook site? I asked to join a couple of days ago and have not received an approval. I am seeing a surgeon on Tuesday of next week for a consult and would really like to talk with a few people first.
My head is spinning right now and I have a lot of concerns/questions about surgeries people have had.
Susan

You know,the first time I joined I didn't get a response right away. I don't know what I did wrong. I then did it again and got it right away. Try it again. Do it from their home page, maybe that is why.

Thank you @jmmb . I haven’t heard back from the MALS Pals Facebook page yet. Is there any chance you (or someone here) could look at the list of surgeons there and tell me who, if anyone, is in San Diego? I have called Dr Bilchik in LA but he is out of town for a few weeks. If there isn’t anyone super experienced in San Diego, I would be interested in others in the Los Angeles area. Thank you!!

@susanf I am not sure. I never had a facebook account until I joined. there are two groups, Mals Awareness and Mals Pals, I tried both. I heard from Mals awareness first the same day. Mals Pals not for awhile and then I tried again. I guess I did it wrong some how on the first try. All I know is to post you need to be on their home page, so I guess you hit the join button and then make the request. I am sorry, I am still not good at it. I will look into it some more in the next few days.