r/thelifeofMALS

Hi, I'm new here... I just got a CPB yesterday and only had a little bit of pain relief. I did notice some changes (pain not lasting as long, not starting as quickly, turning over at night was less painful) but not the full relief so many describe (my GI being one of them). I see my surgeon in a few weeks and I'm really worried he's going to say it's not enough and just wash his hands of me. I'm just feeling really hopeless and could maybe use some positive stories... thank you.

do you start getting pain when you have to sit for long periods of time? (ex desk job)

do you start getting pain, discomfort or dizzines/nausea when carrying weight? (ex grocery bags)

sorry if it’s tmi but do you have trouble with constipation?

I apologize in advance if this question has been asked before. I am painful and desperate.

I have MTS with an iliac stent placed two years ago for non-thrombotic MTS. My symptom that led to the diagnosis was a new, not pregnancy related vulvar varicosity.

GI symptoms for years-weight loss, IBS and IBD like with very unhelpful biopsies and scopes so I gave up on going to GI doctors. Right before MTS diagnosis GI was also much much worse. Super tight abdomen and pain after eating that was all relieved when the iliac stent was placed.

Fast forward two years and I am having all the same GI problems plus lots of pelvic pain. Went to an ER that is two hours away because they have a well regarded vascular surgery department and I was worried that my stent was occluded. They performed a CT venogram of abdomen and pelvis which was unremarkable but thankfully showed the iliac stent is patent.

Does the negative CT venogram rule out MALS or is it worth pursuing?

TIA

Hey team, hope you are all hanging in there! I have a question about whether I was dimissed unfairly or if im barking up the wrong tree.

So, I have life debilitating GI symtpoms every meal of every day. Usually, painful achey fullness, electric shock barbed wire nerve pain, burning, twisting, nausea. I have recently diagnosed hypermoblity, POTS and MCAS and Hashimotos. I had a CT angio done a few months back and also endoscopy. I believe they found evidence for MALS and SMAS yet they didnt follow up due to it being mild/moderate. I will post what it said below and would love to hear if anyone has a similar story or did further tests and found out it was indeed a compression syndrome.

"Mild compression of the celiac plexus due to the acruate ligament of the diaphragm AND moderate narrowing of the third part of the duodenum as it passes between aorta and SMA AND dilation of the duodenum shown in endoscopy."

Am i crazy or should this be taken more seriously as a cause for so many of my issues?

Thankyou so much in advance,

Tabitha

Hi everyone,

I had laparoscopic surgery for MALS in mid-April. The surgery went smoothly. The first 10 days were tough but things have been better since then. The only thing is that I’m still experiencing gastrointestinal symptoms (nausea, bloating, uncomfortable fullness after eating, constipation, diarrhoea) although I haven’t had any major pain episodes. I’m also experiencing headaches and general fatigue, but perhaps this is due to a virus.

I have the following questions:
- Did anyone else have a similar experience and, if so, how long did it take for these symptoms to resolve?
- If you struggled with weight loss due to MALS, how long did it take for you to start putting on weight?

I know there is a chance that stenosis of the coeliac after can reoccur after surgery and this is what I’m afraid of. I will ask my surgeon to check this at the follow-up appointment.

If anyone has any tips on how to help these symptoms settle down during the recovery process, I’d be very grateful 🙏

Hello. I have MALS and its getting so bad that I will need surgery. From what doctor said, while this is syndrome is rare, the laparoscopic surgery is quite standard and it didn’t seem dangerous.
But now I’m reading apparently its very dangerous and I’m getting scared. Can you guys please tell me more about it?