Median Arcuate Ligament Syndrome (MALS)

@sweetpea53 May I ask how they handle your pain during hospitalizations and what they do to treat you? I have been hospitalized once for the pain and had a doctor tell me basically i had to learn to cope with my pain (this was after my first surgery and the pain returned with vengeance). He also told me to stay away from vascular surgeons as that is the last thing I needed... he obviously did not understand MALS or FMD. Long story short, I had an awesome primary that advocated for me and had a second surgery due to restenosis of my bypass graft and removal of scar tissue... an extraordinary amount. I ended up with a graft revision and was free of pain. I really am curious how people are treated when hospitalized and was it helpful?

I also live in PA. I sent a private message.

I lay on my right side (due to pain on my left side) with legs up to my chest. Sometimes I wake up and am on my back.

Has anyone noticed they become pale or has anyone said you look very pale?

I cut and pasted this from another group that has listing of MALS drs by state. This list is from patients within the group that have heard of or recommended them. They are not endorsed in any way, just info. It of course came out funny. basically says town, dr's name, and type of surgery if specified. Hope you can make it out...Not sure which cities are where so I just gave you all. I hope this helps.
Pennsylvania
Altoona Dr. Matthew Newlin
Robotic Assist
Allegheny Allegheny General
Dr. Kenneth Williams
Bryn Mawr Bryn Mawr Hospital
Dr. Jennifer Denne
Robotic
Doylestown Josh Eisenburg Hershey Penn State Hershey Medical Center Dr. Haulk Laparoscopic Altoona Dr. Arthur Demarsico Stent Placement following MALS release Reading Dr. Paul Impellizzeri
Philadelphia Penn Vascular and Endo vascular Dr. Venkat Kalapatapu Open Philadelphia Thomas Jefferson Dr. DiMuzio Stents - Also is a Top Surgeon who assists surgeons under him with surgery for Mals. Philadelphia Dr. Pucci (currently on medical leave) Laparoscopic Philadelphia Thomas Jefferson Dr. Babak Abai Philadelphia UPenn Dr. Ben Jackson Bryn Mawr Bryn Mawr Hospital Dr. Jennifer Denne Robotic

I lay on my left side as well. I can't lay on my right side because I put my arm up and my right arm goes numb right away. I do however wake up and I am on my back.

I too have just been diognosed with Celiac Artery Compresion Syndrome. I am having trouble finding a surgeon close to where I live. I live in south central PA. I am fighting pain 24/7. I have been hospitalized three times in less than a month. I have found one surgeon in Philadelphia that is five hours away but having a problem with my insurance. This is so frighting and stressful.

Yes, Please keep us updated. I hope you find some help, in the meantime if you have pain that worsens, or any other symptoms that develop please do not hesitate to go to the ER. I know we question our symptoms often and go back and forth if we should be seen, but rather error on the side of caution when it comes to any kind of ischemia! Thinking of you!

I would flip flop!! Moving things around after a meal.

I was told to come back in 6 moths for Doppler imaging. I was given med for cholesterol and advised to take 1 aspirin every day. When I asked what should I expect or look for unti this is resolved, he answered, "Just be aware".......OMG, aware of what?
So I will have all my records and scans sent to Mayo to see if they can help. I have read that they will do something because there is a pretty good chance of getting a blood clot in small intestine if arteries remain blocked.
I'll keep you updated as I look for a solution.