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Feb 8, 2019 · Median Arcuate Ligament Syndrome (MALS) in Digestive Health

Hi! I just received my CT-A results showing a significant narrowing of the celiac artery. My GI said that "suggests" MALS and referred me to a vascular surgeon. Here's some history on me. I have been nauseous 24/7 since the beginning of August. I have no appetite and can't eat or drink much due to the nausea. I do not have the pain most people with MALS describe. I do sometimes have pain in my back on the left side just under my ribs that radiates around to the front. I am weak, sometimes dizzy, and get tired easily. I have lost 58 pounds. I also have blood in my urine that the docs have not been able to find a reason for. I have had a regular CT scan (only showed an ovarian cyst at the time, but a new GI noticed the narrowing on it months later and sent me for the CT-A where it was confirmed), MRI, abdominal U/S, chest x-ray, nuclear med test of my gallbladder, gastric emptying test (showed slight slowing), Holter monitor to check my racing heart, lots of blood tests (even one to check for Polycythemia Vera), as well as stool and urine tests. All came back fine (except where noted). I did have IBS in my 20s (I'm 48 now) which got better after I had my children. In recent years, I'd sometimes get terrible stomach pains that I thought came from eating something too greasy. They would last for a few days. I haven't had that since the start of the nausea back in August. I'm not sure if the IBS was a misdiagnosis back then or if those pains are related to MALS? The pain was not immediately after eating and it wasn't regular either.
I just have so many questions. I've been reading this page since I got the diagnosis yesterday. I've seen posts about SIBO and it's got me wondering. I had a hysterectomy 11 months ago and have had multiple laparoscopic surgeries in the past (starting back when I was in my 20s and had the IBS diagnosis). Is SIBO something I have to look into as well?
I live in Roanoke, Virginia. Will the surgeons here have any experience with MALS? Are there any surgeons at DUKE or UVA that do? Our insurance would allow us to go to those two, not sure if they would allow us to go anywhere else. Can you fight insurance to get coverage with a specialist if they don't have one that can do this surgery?
I'm concerned about another big surgery just one year after my hysterectomy. Being so new to all of this, I'm still trying to wade through the pros and cons of the lap vs. open methods. I've read a little about the celiac block. Does this only deal with the pain? Or could it help the nausea?
I'm sorry this is so long. There is just so much to take in now. I'm sure I'll have more questions, but I'll leave it there for now. Thank you!