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Median Arcuate Ligament Syndrome (MALS)
Digestive Health | Last Active: May 6 8:00am | Replies (1159)Comment receiving replies
Hi Lisa,
My 18 yo daughter was recently preliminarily diagnosed with MALS after several years of testing and pain. She also has a congenital anomaly of the anatomy of her duodenum. She has always been slender, but a couple of years ago began to have issues with vomiting, significant pain, and has lost a significant amount of weight. She is 5'7" and hovers between 85-90 pounds. She is in pain all the time, and her doctor has said she will need to have an NJ tube if she loses more weight. She is headed away to college in a few weeks, so I am even more concerned since I won't be with her.
We have been seeing doctors at Johns Hopkins All Children's Hospital in Florida, but I am thinking we need to go to a team with significant experience in MALS. Do you have any insight you could share? Thank you in advance!!
Replies to "Hi Lisa, My 18 yo daughter was recently preliminarily diagnosed with MALS after several years of..."
@jenno - welcome to our MALS group!
I had surgery for MALS 2015 at MUSC, Charleston, SC.
Successful so far.
As you have realized, not all major institutions are considered experts in MALS surgery.
Why not try to get seen at Mayo, Jacksonville, FL?
I found myself lucky to have first been seen at MUSC GI department at Charleston, SC. And referred to their GI surgeons.
After 6 months I needed a stent to keep the artery open- also an excellent vascular surgery department. I have been fine for 7 years!
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Hi @jenno and welcome to Mayo Clinic Connect. Sorry to hear that your daughter is going through this, just as she is beginning to spread her wings and start college.
Have you looked into Mayo Clinic in Jacksonville? https://www.mayoclinic.org/diseases-conditions/median-arcuate-ligament-syndrome-mals/care-at-mayo-clinic/mac-20505015