Median Arcuate Ligament Syndrome (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.

@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.

"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) 🙂

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.

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.

Hi Ingegerd, I'm getting a little tangental here, but thank you for your reply to an earlier post. I had never heard of MALS before and have been reading about it. It does fit the pattern of what I experience to some degree - eating and activity, particularly bending over type things, exacerbate my pain. Not immediate, i.e. when I am doing it, but later on. I've always found this interesting but never found anything else ever talking about a relationship.

One thing I don't have however is vomiting. I have nausea, but don't vomit. It seems that vomiting is listed as a classic symptom with MALS (as well as mesenteric ischemia). This leads me to think (and I know my Dr. will think 🙂 ) that this couldn't be my problem. Did you have vomiting?

@jmmb !!!!!! OH MY!!!! a lot has transpired since we last talked. I was diagnosed with POTS years ago, not as severe as what you are going through! I often thought if I could just go in for an IV occasionally I wonder if I would feel better. So strange about your sodium!! I seen Sandra Taylor at Mayo- she is a Nephrologist and she was incredible! So sorry to hear about your daughter's wedding, but amazing that she changed it to San Diego! Refresh my memory, do you have joint problems? I am remembering something autoimmune?? I am just curious if yours MALS, Dysautonomia is also related to Ehlers-Danlos? That seems to be a common triad I have noticed in a subgroup of us.

@jmorgs I am so sorry to hear what you and your daughter are going through, and it looks like you have a bit of rough journey ahead but you are not alone. This is an awesome group of people, many who have been through what you and your daughter are experiencing now. She sounds like she is a strong surgical candidate and that surgery could minimize her symptoms greatly. Because of her added diagnosis it is always a bit more challenging. Recovery for me was long, however I had an open surgery/bypass. I think many people have long recovery, it is much like having a complete hysterectomy for open surgery. 6-8 weeks of the initial recovery then it is slow going but progressive change of symptoms over a years time. It is a differ recovery in that you feel better after surgery, but your body takes time to adjust to having blood flow. Many people who have surgery ( who don't post here) are completely recovered and do well after surgery with no residual effects, so please keep that in mind when reading posts. I just like to mention that because it can be overwhelming with reading others experiences.

Good morning, I stumbled across this group while trying to gain more info about MALS. A little background info my daughter who is 22 just had a diagnosis of MALS and chronic mesenteric ischemia confirmed last night at U of M hospital. She has a GI follow up today as well as follow up with vascular surgeons in the coming days. We spent her sophomore and junior years of HS in and out of CH Wisconsin due to severe abdominal pain/swelling and an inability to keep anything down. A CT back then confirmed SMA and an NJ tube was placed for 3 months. The GI she was assigned for follow up did not think it was truly SMA he was convinced the vomiting and pain had more to do with pain signals from brain to gut and so she was prescribed increasingly higher doses of Zofran, Tramadol and amitriptyline to manage symptoms as well as therapy to teach her coping mechanisms. This continued through high school and both NJ and Ng tubes were periodically placed for shorter stints. For a child who had never thrown up before age 15 periods of extreme pain and recurrent vomiting became her new normal. To complicate matters she was diagnosed with Rheumatoid arthritis at age 11 and later in HS with systemic Lupus so whenever GI symptoms got worse doctors were quick to attribute it to Lupus flares and rarely looked further. Problems continued sporadically through college eventually causing her to give up being a collegiate athlete. She graduated this past May and moved to Ann Arbor in August to start life as an “adult” but has landed in the ER 3x this month. CT on 2nd visit showed compression of celiac artery. Duplex ultrasound in ER yesterday confirmed MALS as well as stenosis of mescenteric artery. Vascular surgeons who saw her in ER yesterday said CHW should have placed a stent when SMA syndrome was initially suspected. Sorry that was really lengthy. Would appreciate any insight into what we can expect on the road ahead. Such as realistic recovery times and how much support she may need post surgery as I am a single parent and she is now living alone almost 6 hours from me. Thankfully I have a very supportive boss and may be able to do some work remotely but to further complicate matters I am supposed to have shoulder surgery in the coming month but that may just need to be postponed

This is so freaky!!! This morning I was thinking of you, I swear!! I have been so wrapped up with my health in other areas, the MALS has been on the back burner, But this morning I don't know why, I was like, oh I should send Kari a message to see how she is doing...I've been so busy all day and when I saw the email this morning I was like no way!! This is the first chance I had to sit down.
Well I dont' even remember what you know. I have continued to be sick, more than stomach issues. So when you recommended mals pals people there suggested my symptoms to be POTS and dysautonomia and they were right. So thank you because I would never have known these things!! I am on 2 liters of IV hydration daily. I am still dehydrated and they don't know why. Kidney dr. is sending me to mayo to see her mentor because she just can't figure it out. I am peeing out my sodium, but my blood sodium is ok, and I am peeing way to much but mostly at night. I can't get in until Oct. 22. Trying some meds for the pots/dysautonomia. Iron was low now that is ok. Had mri of head and back and my neck is really messed up, so in PT.
My daughter was suppose to get married in June in Jamaica, but she cancelled because of my health. They are getting married Oct. 4 on the beach in San Diego. This way I can drive and take all my hydration.....
How are you doing???