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Median Arcuate Ligament Syndrome (MALS)
I am looking for other patients that have been diagnosed with Median Arcuate Ligament Syndrome. Although it is caused by compression of the celiac artery many people experience abdominal pain after eating, diarrhea, food avoidance. Usually the first doctors they see are GI doctors. It is a diagnosis that is made after everything else is ruled out. I am curious if anyone else has had surgery?
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Nice to hear you finally have some relief from the pain, good luck with the treatment.
Sorry to hear you are having so much trouble. I can relate to you not being able to eat anything. I've not had a proper meal in over a year and I've been living on corn snacks since last October. It's such a struggle to keep the weight loss to an absolute minimum. Let's hope you get a breakthrough very soon.
Have you been checked for pots?
Hi @jayson
Throughout this thread there has been a theme whereby some pain returns, sometimes caused by scar tissue. I think MALs diagnosis and surgery is still in its infancy, as such patients don't always get the best care before, during and after surgery. In the UK we are even further behind you in not just doctors accepting MALs exist, but in treating the condition.
The one thing I have learned from this group is I must be educated on the condition, especially when talking to doctors and be organised. For me that also means organising the multidisciplinary team that will care for me before and after surgery. My primary care physician is the focal point for all. I am also under a Gastroenterologist, a Vascular surgeon who will perform the surgery, a Pain specialist and a Dietician. There is also a Physiotherapist who will come onboard after the surgery. I requested this to try and combat the effects of scar tissue causing pain after the surgery.
@sclindajanssen posted a very interesting research paper a few weeks ago (Interprofessional Management of MALs related to Lumbar Lordosis and Hip Dysplasia.) Although it is quite a technical read there are elements in there of use to all, especially around exercise. @sclindajanssen also discusses how MALs affects other body systems with a wide array of symptoms in a patient.
Both @lasirvent and @jhmontrose have mentioned lower rib squeeze and scar tissue in their posts. My advice to anyone going for surgery is to employ the services of a physiotherapist for post-surgery care. This would apply more for those going for open surgery, but still can be considered and have benefits for those having laparoscopic surgery.
It would be interesting to get an update from @sclindajanssen and get her thoughts on physiotherapy after MALs surgery.
Hi @tonlop628
How are you getting on? Have you had your CT scan?
Hi @jayhawk57
Something I should have mentioned is if you are having difficulty eating make sure you see a dietician. I didn't see a dietician straight away and suffered the consequences. I became extremely deficient in various vitamins and minerals like vitamin c, vitamin d and iron; I had gum disease multiple times and lost teeth. I had terrible headaches, extreme brain fog, lethargy and the list goes on.
Although the dietician didn't know anything about MALs, the first thing she did was prescribe high dose multivitamin and mineral complex, (Forceval Capsules.) Educating the dietician on the effects of foods on MALs sufferers means there is another clinician on the care team and will help others who present with MALs symptoms.
Hello…
I just discovered this group and was hoping to get some feedback from others that have similar symptoms with their MALS.
I was diagnosed about three years ago by accident in the emergency room. It was determined that I was having a gallbladder attack and by chance the CT angiogram saw that I have MALS. I also had 2 follow up CT angiogram‘s that confirmed MALS.
I was diagnosed with IBS about 15 years ago and was on acid reducers that made me feel horrible… But like most people I wanted to follow my doctors advice and kept taking it until I couldn’t stand it anymore.
My symptoms are constant bloating, burning feeling in my stomach and liver, severe pain between my shoulder blades, yellow stool, constipation, diarrhea, fatigue, chronic SIBO, anxiety
Like most people on this group I have spent years and thousands of dollars to try and figure out the root cause of my problems. I had my gallbladder removed because it was not functioning properly. Unfortunately… Nothing has changed.
My gastroenterologist and primary care dr. believes that my symptoms are just IBS and my pain is visceral. I am not a candidate for surgery because I can eat.
Thank you in advance for any information or helpful tips for people that have similar symptoms as me
Erin
Hi! I’m so sorry for all you’re going through. I had mals surgery a year ago and no longer have the knife stabbing pain. My suggestion would be ( if you use Facebook) to go to a group called Mals Awareness. There’s loads of information about mals. People are so wonderful and can help with their experiences. I couldn’t have gone through this without them.
Thank you so much for your reply! I found that group a few years ago but it was very overwhelming to read what people were going through. I no longer do Facebook at all. I’m hoping to find someone here that may have my similar symptoms and what they have done for relief without surgery. Thanks again
Oh don't you just love it when someone says you "JUST HAVE IBS" as if it's not important, doesn't cause pain, doesn't change quality of life etc. etc. I do appreciate (most) doctors but it's 2021 !!!! By now should someone have to go through all of this, including surgery, and still suffer? And if I hear any more that IBS is brain-gut I will scream. How about its gut-brain, as in, something is wrong with our gut and it is saying to the brain: hey, I hurt, can't you figure this out for me?
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