Median Arcuate Ligament Syndrome (MALS)

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

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

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.

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

@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?

When I have an exceptional amount of pain my kids comment how pale I look, they know I don't feel well. I think that is a common symptom with pain, however I am not sure. Also I have Iron deficiency anemia, which I am sure many of us have possibly from malnutrition? That can cause you to look a bit pale I believe.

I think the stress of severe pain causes pallor- less blood flow to skin.

That makes sense, this gives a good explanation also: https://www.healthline.com/health/mottled-skin

Seven years and dozens of CT scans later I've now been diagnosed with MALS. 90% stenosis of the celiac axis. I'm now in search of a doctor that specializes in this type of ailment since it seems to be a rare condition. Any suggestions?

Hello @dpresbit sorry you are one of us, but it is good to finally get a diagnosis. Where do you live? There is a Facebook group called Mals Pals and they have an updated list of surgeons/drs. by state. It is made from word of mouth from members on the site that have recommended them. If you don't want to join, I can look for you and let you know.