r/thelifeofMALS

I had a laparoscopic release in July 2021. Post-surgery tests shows celiac stenosis was gone and PSV was back to normal velocity.

I’ve been having a recurring low level stomachache again for most of the year. Took a little while for me to connect the dots, but once I realized it wasn’t going away and was starting to affect my life again, I messaged my surgeon. Mesenteric ultrasound confirmed celiac stenosis with PSVs in the 290s at the celiac trunk. Follow up with surgeon is the 20th.

So far symptoms have been milder compared to my first episode. It’s not waking me up at night, the post-prandial pain isn’t as intense, but my appetite is shot, and I don’t eat a ton when I manage to convince myself to eat anything.

We’ll see where we go from here. Wish me luck on round two!

I had open surgery two weeks ago tomorrow, and I feel amazing. Obviously being cautious and taking it easy but I feel great. I get the staples out on Tuesday and I’ve been off pain meds for about 5 days. It could be that I just didn’t realize how miserable I actually was now that I have some relief. But I feel much better than I expected after reading and doing as much research as I did. I’m sleeping better than I probably ever have. My anxiety is almost completely gone. The number of seemingly unrelated symptoms of this condition are crazy now that they are gone. But I’m grateful for the relief. It took a year and a half to get a diagnosis but it was worth it.

Hi! I’ve been having some pretty intense pain and an almost burning sensation right between my ribs after eating anything. It’s pretty constant and eating anything makes it worse. I’ve lost almost all of my appetite and I’ve lost about 12 lbs in two months without trying. I’ve had an endoscopy done which showed mild gastritis and a HIDA scan which showed low gallbladder function. I’ve tried low fat, PPIs, blue binders, etc. to no avail. I also had a normal abdominal ultrasound and normal abdominal ct w/ contrast. Is there a chance I could have MALS?

Hi! Is there anybody here who has MALS—without surgery (or perhaps SMAS or other compression syndromes)—and has a bowel stoma? Did the compression syndromes get worse for you?

Hello,

So I have been dealing with pain after eating in upper abdomen, constipation, severe fatigue after eating, fear of eating, and bloating after eating. I get pain most meals, but not all. I notice if I eat larger melas the pain is worse, but I also get sooooo tired afterward. I got tested for basically all the GI tests you can think of (SIBO, IBS, GERD, H. pylori, lactose, gluten, the list goes on). Every single one came back negative, they gave me anti-IBS pills which did nothing. Antacids do nothing as well.

What relieves the pain is leaning forward, laying on my left side, or curling up in the fetal position. I have noticed when I workout it hurts especially more on leg days and ab workouts as well as when taking brisk walks.

So for imaging, I had an EGD that said I had chronic minor inflammation in my stomach, CT scan of my abdomen showing moderate stool burden - so I took Miralax and Milk of Mag - ended up losing 5 lb of stool, a scan of my liver and gallbladder, then incidentally noted was 280 cm/s velocity in my celiac artery when I exhaled and going back to normal when I inhaled, CTA scan that showed slight kink in my celiac artery, but the radiologist said no sign of MALS. My CTA scan said I have a small hiatal hernia as well, I have no idea if that could be causing my symptoms or not, I did some research and my symptoms still match MALS more. For those of you with MALS, how many tests did you get till you got correctly diagnosed? What specific symptoms do you encounter?

I (28F) was recently diagnosed with MALS and am about to schedule laparoscopic surgery with my doctor.

Background: I have had bouts of nausea and vomiting so severe that I've had to stay in the hospital for days multiple times (twice in the past year alone). I get severely bloated when I eat to the point of feeling like there is an inflated balloon under the bottom of my sternum that causes pretty intense discomfort. Sometimes I can only stomach a few bites of food even when I've barely eaten in a couple of days and other times, I'm completely fine. My base pain/discomfort level on a daily basis without eating is at a consistent 3/10 but sometimes can go up to a 7-9 after food depending on the day. It's not terrible every day, but I still find myself extremely anxious before and during every meal, anticipating the possible pain/discomfort. My parents don't fully understand the hidden pain of this syndrome and aren't sold on surgery since I haven't had an episode that has sent me to the hospital in 5 months. I tried to explain that even though it hasn't been so bad recently, I am still perpetually uncomfortable (and ok at hiding it) and the constant anxiety of wondering how I'm going to feel after a meal and waiting for the other shoe to drop on an episode that will send me back to the hospital is exhausting.

I know this is ultimately a decision I need to make with my doctor, but my parents have made me second-guess whether I should go through with surgery soon or wait until I have another severe episode.

For anyone who has gone through MALS surgery and recovery, I’d really appreciate hearing anything about your personal experience. I know everyone’s experience is different, but I figured it couldn’t hurt to ask.

- How long did recovery take? I know doctors give a general timeline, but in my experience, recovery often takes longer or looks different than expected.

- What was the hardest part about the process for you?

- Did the surgery actually help your symptoms? Did it address a couple of symptoms, but not all?

- Did your symptoms get worse post-surgery before they got better? If so, how long did it take before you noticed improvement?

- How did you prepare for surgery? If you did it over with the knowledge you have now, what would you have done differently?

- How long were you unable to work or do normal social activities?

- Ultimately, was the surgery worth it for you?

Thank you for reading all of this and taking the time to reply if you do. I'm just trying to weigh my options and figure out what would make sense for me right now.

Hi, newly diagnosed and I do have upper pain, but does anyone else also have these really painful pains on their sides (right above their hips) that just is so sharp it feels geniunely like being stabbed? 😂 I’ve also been very nauseous and dizzy recently, but im not sure if it’s MALS related

For anyone who has smas or mals, has anyone had a low mm aortomesenteric distance, but a within range angle measurement on ct angio? Doctor still wants to do duplex ultrasound for mals.