Thank you, thank you! I needed some encouragement. Happen to be back in ER, readmitted; they just have no clue what to do with me (and those like me) here- so every step is a major battle. I believe you’re right; CTA today shows celiac artery is still compressed (…at they very least), and I have granulomas in my lungs and liver that no one has ever worked up, pneumonia going on since Sep. They were going to send me home until I pointed out I’d die of malnutrition. Gastroenterology refuse to be involved in anyway, as do several other specialists. Have been considering going abroad… somewhere where physicians actually know something about conditions secondary to EDS…

How long ago did you have MALS surgery? And how long after did they find the problem with the Celiac artery? Has the stent been successful so far?
I had MALS surgery in May. They cut back the Ligament and all the nerves compressing the Celiac Artery. So far, I have had minimal relief from the surgery. My surgeon recently requested and I had a CT of the abdomen and Pelvis, CTA Abdomen and Pelvis both with and without contrast. I then had the Mesenteric Duplex Ultrasound. The velocity numbers were still high. The conclusion was that the MALS was gone, but my Celiac Artery went from being 50% blocked in March to now 75% blocked. They want to do a angiogram angioplasty to try to clear the blockage. If that doesn't work, they would do a stent or bypass. I have heard from many people on MALS PALS that the stents fail alot and was wondering what your experience has been so far with your stent. I'm very nervous and concerned as to what to do. Thanks.