r/thelifeofMALS

My CTA was done incorrectly, checking my body during inhalation instead of at maximum expiration. I still have a long way until I can see my doctor, and I am very anxious because of this. According to the radiologist, the J-hook is present, but no stenosis can be observed. My ultrasound earlier recorded increased velocities (230).

What will happen now? I am very anxious about repeating the CTA, as this is already the 8th one of my life.

Hey everyone! Just wanted to drop a note saying how insanely different I feel post op. Robotic release last Thursday, immediately ate two dinners at the hospital and had NO pain. Insanity. Home now and resting. There is hope, y’all!

My Drs can't agree if some of my symptoms are MALS, MCAS, dysautonomia, or gastroperisis, but treatment isn't the same both long term and in the short term. For example, I'm not going to want to use epinephrine if it's not anaphylaxis. It's to the point even specific scenarios my Drs can't agree on what they think caused it.

A few weeks ago I had an incident where after just a few bites of oatmeal, I felt it get stuck in the upper left of my stomach, my nausea got worse, and the back of my throat started to feel tight but I could still swallow water, medication, and saliva. My tongue started to feel funky and I was having difficulty breathing, upper body felt like it was losing circulation, and then I started shaking although the shaking might have been anxiety at that point. After about a half an hour of it not improving I was told to call paramedics. They didn't know any of my health issues, told me I was above their pay grade (I understand my health is complex but they said it in a rude tone of voice and they said other stuff that showed poor understanding of being a wheelchair user too and such because they expected me to be able to walk without assistance.) My oxygen was 100%, and my pulse and BP were fantastic so I decided to stay home and hope I would be ok. I have to be very careful with hospitals with my MCAS (I react to most meds and I get anaphlaxis from at least some medical facilities despite wearing a respirator in public) , Myalgic Encephalomyelitis, severe emetophobia, and I'm immune compromised.

Problem is, my Drs can't agree what that was or similar incidents. Most of my Drs don't know what MALS is and are just hearing about it from me. I'm not officially diagnosed but just highly suspected to have it by a GI Dr and my nutritionist, and some others think it sounds like I have it. A different Dr thinks it's gastroperisis though but he also doesn't seem to know much about MALS and I'm aware MALS is often mistaken as other things. So although one of my Drs said that whole incident sounds like anaphlaxis and that she would have had me use epi, she is not educated on MALS, gastroperisis, and she knows dysautonomia exists but nothing really about it including basic stuff such as compression socks. Some others think the food getting stuck set off other symptoms.

Ever since I stopped having the oatmeal, I only have ice cream cones and oatly vanilla oatmilk left, and I'm currently in a long process of trialing oyster crackers to see if I can do yeast and baking soda because historically bread and crackers helped my stomach, but I have to re find out of my MCAS can tolerate it. I'm having a heavy diet of liquids and since then my energy has significantly improved, stuff doesn't get stuck as much in my stomach outside of my period unless I drink too much too fast, my breathing has improved and sometimes I can take a deep breath without pain now which I recently found out in the last few weeks that taking a full deep breath isn't supposed to hurt apparently????? I'm getting more calories too, although it's still not enough and idk how to. Only thing is my family asks sometimes multiple times a day when I'm going back to oatmeal, and the ice cream cones I'm eating have been out of stock at the store for a week now. I did buy a food processor for the oats to see if that changes anything but I've been admittedly scared.

Hello, I have been dealing with MALS like symptoms for the last 2.5 years (pain after eating, nausea, bloating, extreme exhaustion, unintended weight loss, etc). I just had a CTA earlier today and it came back saying there's no evidence of MALS. Should I try to get the mesenteric ultrasound just to be sure? I saw some info online about CTA scans sometimes missing MALS because of how they are done. Otherwise, my doctor just thinks it's stress related pain. I'm just really upset because I've been struggling for so long and I was really hoping the scan would show something. So I'm just curious what you all think! Thanks :)

I’m on my way to a surgeon consult for MALS surgery right now after I had an extremely positive ultrasound for having MALS. I also received an endoscopic nerve block, which only really helped 20% of my symptoms. I guess I’m kinda second guessing that MALS is what’s wrong with me since the nerve block didn’t help that much and some of my symptoms don’t line up. I would say my primary symptom is severe constipation, waist pain and flatulence (I very often throughout the day feel bubbles running through my gut). But I also have significant burning pain just below my rib cage after I eat, bloating and occasional nausea and diarrhea (even though I feel constipated when I have it). I just want to know if anyone else has experienced similar symptoms, because I’m worried that I’ll get surgery done and find out that wasn’t really what was causing my problems.

I’m bracing myself for a full Reddit pile on just for asking but im just so curious…umm whats up with the downvoting pattern in here?
Im noticing it in particular with posts and comments discussing symptoms, recovery experience, surgical options, etc.
I also recently made a post asking for studies and discussion around nerve involvement and most people’s comments were downvoted to 0. Ultimately who cares about reddit karma. I was/am able to have the discussions and find connections where needed regardless of voting, but it leaves me wondering.
What’s pissing everyone off so much?
Would adding post flair to this sub help?
Do you need a hug? (Frfr)

I don’t get it

What

Hello,

I had surgery back in March and things have been going fairly smoothly. I started a new job about a month and a half ago that became way more physically demanding than what I had initially signed up for. About a week ago the pain started again and I have been throwing up and have been making frequent trips to the bathroom. I was wondering if anyone experienced anything similar this far out from surgery.

I’m recently diagnosed with MALS after a long history, awaiting surgical consult. I’m still learning about the condition and am having a hard time wrapping my mind around the nerve involvement. I’m interested in studies that might connect it to nervous system dysfunction/dysautonomia, but also want to learn more about the long term implications of cutting or removing that bundle. Am I misunderstanding that aspect of the procedure entirely? How does altering such a major system of nerves affect the rest of your body? What are the long term complications?

I would love to hear if you have personal experience with nerve dissection, how you feel post recovery, etc. as well as read any studies or articles. Thanks so much in advance

I need help deciding if I should do open surgery with Dr. Hsu.

I had a successful nerve block a few weeks ago and a lovely consult with him after.

He said I should do open for 3 reasons:

1. He needs to remove the entire wrapped trunk of the nerves, not just what’s on the surface.

2. He will trim my diaphragm back 3cm so that even if the ligament were to grow back, it wouldn’t push on the diaphragm

3. He removes the entire ligament, not just snipping in it half so that it can't grow back

It seems these are things that cannot be done laparoscopically? Does anyone have any insight?

I trust him to do a good job, but the recovery period freaks me out a little and I don't want to put my body through that if there is something that might be easier.

I have had epigastric pain for decades, I have had a 1.7cm gallstone for less than a year. They have been checking my gallbladder for decades due to the location of my pain but it’s never gallbladder.
When removing my gallbladder, since it’s the only option I have, can MALS be visualized/detected? I have a note from the endo doctor to take many photos of my diaphragm to look for endometriosis, can the same be done for MALS detection from under my diaphragm? I have been advised it could be possible I have MALS with my significant history but never actually explored.

TIA

Hi! I’ve suffered from MALS for years which i did not know for a long time. I’m afraid of getting surgery because since a few months i got into a stage where i have upper abdominal nerve pain, burning sensations and it feels like getting stabbed. I can’t deal with the pain and I don’t even know what a normal night of sleep looks like. I don’t have a lot of apetite left and i’m forcing myself to survive on nutridrinks. I lost a lot of weight, ended up in the hospital for 2 months total. It’s a long story.

Anyways, i’m afraid surgery will “activate” my nerves even more and I have nothing to deal with the pain. I read stories about healing journeys for like a year or so. Do you all lay in bed for a whole year to recover? Or can you still do groceries, house chores, work etc.?

Hi yall!

So im 3 weeks post robotic release, and on Sunday I started puking and couldnt tolerate liquids so it was off to the er. They did a ct scan which found complex fluid and inflamed tissue causing severe compression of the celiac axis, and my pre-op ct scan found only moderate compression. I was hospitalized for nausea and vomiting for a couple days until it passed.

My symptoms are definitely worse post-op, and I cant tell if its worse mals pain with severe diarrhea after eating or if its dumping syndrome.

Either way, has anyone symptoms and compression gotten worse after surgery and was it temporary? Im praying once the swelling goes down the compression will ease up.

Any encouragement would be greatly appreciated.