Median Arcuate Ligament Syndrome (MALS)

Hi Elle! I had only nausea, no vomiting! Just running out for an errand and I want to be able to give you a better response, so hold that thought? Basically not everyone vomits.

I will hold it, but thanks for the quick reply!
I was curious, because one think I've encountered on my GI journey, is that there are often lists of 'classic symptoms", that docs learn for specific disorders, and if you don't fit the complete profile, you are ruled out. The GI doc I have is very much of that variety, although he is a fellow (in training) and I think he is going by what he has been taught. He says you can't have this or that because you don't have diarrhea, or whatever symptom you are "supposed" to have. Yet, I'm finding, that not everyone follows a typical pattern, so I think they have to be willing to think outside the box sometimes. It feels like I have a "block" there , although obviously no obstruction or anything that shows up on a scan. I have bile backing up into my stomach, and some damage to cells there, SIBO, and "markedly slow" small intestine transit. Logically, this all seems to correlate with what I am experiencing.. almost like there is a "block", there is a log jam, but it's not my bowels, it's at the small intestine.. everything is backed up there, causing the bacteria to multiply and bile to reflux. It logically makes sense, but since there is nothing physically "there", the doc says I have IBS-C, and orders laxatives, which make me feel worse, and well, do give me diarrhea.

I still think there is something wrong. He also says, even though I have SIBO per culture from the duodenum via endoscopy, that it's probably not my problem because I don't have diarrhea. Well, I've been on websites of centers that deal with SIBO, particularly Johns Hopkins and a Doc at Cedar Sinai in LA, and they talk about how SIBO can present with diarrhea or constipation, but certainly not limited to diarrhea. I realize that is not topic here, but just throwing out as an example of how a doc was taught a certain "list" for a diagnosis, and then rules it out based on that. I won't go into that more here.

I realize (like the woman who just wrote about her daughter) there are people who may have very severe forms of MALS and vomit and be very sick, but maybe it's possible to have a more chronic presentation where it's bad enough to cause pain and nausea and well, things to not "work right", but not to the point of nausea. I am just trying to think logically about these things :).

One thing I'm learning from these forums, is that a lot of patients don't fit the "classic" profile. I look forward to hearing some more from you. I'm just really frustrated. I've gone to PT for 5 months, studied mediation with a Buddhist monk for a couple of years, listened to hours of IBS self hypnotherapy CDs, took singing lessons b/c that really focuses on diaphragmatic breathing (I'm also supposed to do for nausea), changed my diet, tried cutting out lactose, coffee, gluten, none of it changes the burning pain that now has me on the couch.

"Many people who have surgery ( who don't post here) are completely recovered and do well after surgery with no residual effects"
That is an excellent point Kari, and good to keep in mind!
I am very early on in exploring MALS, but from my reading, it seems that the surgery is very successful for a lot of people. I also think if something is left untreated for a long time, as seems to be happen often with this diagnosis, secondary problems can develop, so those can continue to cause some problems.
And, as you point out, those who are fixed by it are out living life, not lying around on a Digestive Disorders forum on a beautiful Saturday afternoon (at least where I live) 🙂

@elle1233 - I never vomited as part of my MALS symptoms. Always queasy and nausea at times, no appetite. I didn’t lose weight either which also is common with MALS. I never really knew how many of my ailments were showing similar symptoms! Bile ducts clogged and post meal pain or even pancreatitis, autoimmune inflammation from start to end and what turned out to be MALS.

Very interesting, Ingegerd, TY for replying. How did your doctor come to suspect or find the MALS? I read on one website that it can be seen on a CT scan.

It originally was found on on Doppler ultrasound of abdomen, but was considered a false positive because on CT and MRI blood flow appeared normal. Four years later my internist referred me to another university medical center for a second opinion. There I had a CT angiogram that clearly showed the compression of the celiac artery. It has to be an angiogram for diagnosis- not a regular CT with contrast.
Happy ending! Almost..

Does anyone experience back problems with MALS?

Yes

Thank you for your prompt reply and I apologize for my very delayed response. It has been a rather hectic couple of weeks since my initial post. My daughter has since had and endoscopy, and a gastric emptying study, both test her GI doctor wanted done to rule out any other issues. In between the two she was also admitted to the hospital for a couple of days after being found unconscious by her roommate from severe dehydration/electrolyte imbalance from all of the vomiting. They had her on a full liquid diet with one soft food meal a day but since then have restricted her to full liquid with 3 protein shakes a day until she has her vascular surgery consult on October 12th. That feels like a long wait and a long time for her to be on such a restricted diet when she is already so small but between the liquid diet and the Zofran every eight hours she at least seems to be experiencing much less pain and nausea. While it sounds like the road ahead could still be an uphill battle at times I am thankful for a diagnosis that finally explains all of the pain/nausea she has had over the years. She is thankful too although currently very mentally and physically drained and really wanting to be able to eat solid foods again!

Sometimes all the testing makes things worse, so I agreed, if you need a break take it!