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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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Hi @tonlop628
How are you getting on? Have you had your CT scan?
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.
Have you been checked for pots?
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.
Nice to hear you finally have some relief from the pain, good luck with the treatment.
I'm so glad to hear positive results for you. I had MALS surgery in 2013. Went to Mayo in 2019 and they suggested the injection. I'm going to a university in my area and getting worse. I too am just starting to have moderate to severe pain that runs into my left lower back, this is a new symtom. In hospital x2 the last 2 weeks. Passed out end of Oct at work was diagnosed with ortho hypertension. My BP is high again ....when diagnosed with renal and carotid FMD. I now can't drink without getting sick. The CAT scan showed stenosis in celiac artery which is mild.?? Doctor's are saying they don't know what this is. It is same symptoms as when I had MALS. I did take a drug Rifaxinin which seemed to help with my SIBO. I'm not sure what I'm going to do. Not able to eat or drink is not a healthy quality life. Wishing you the best!!
Yesterday I had a celiac plexus block done by Dr. Krutsch in Denver. I'm happy to report that it worked. This was just a diagnostic block so it's starting to wear off this morning, but it was so incredibly nice to feel "normal" again for a while. I had forgotten what that felt like. What also surprised me is I have had diffuse right flank pain ever since my first MALS surgery in 2015 and that also went away completely. I am hopeful that if I have a second surgery done all of this pain and nausea will go away. The surgeon I've been working with is most likely going to want to do an open procedure similar to what Dr. Hsu does.
If anyone out there suspects they have MALS I would really recommend trying to get a celiac plexus block to see if it provides significant relief.
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1 ReactionI used to eat a lot of Pontefract cakes or Barratt Hard Liquorice sticks (not sure of the US equivalent.) Sadly, my sweet eating days are over as pretty much all sweets contain Palm oil or High fructose corn syrup, two ingredients I generally avoid. There is an alternative, using natural liquorice root sticks and making into a tea (do a search,) it is a staple in Chinese herbal medicine.
If you’re on Facebook take a look at Mals Awareness-they have a list of surgeons who have done mals surgery and people that you can ask questions.
@jayson - I realize that I must have been very lucky with surgeons. At my first visit I decided to go ahead. I had educated myself first of the condition and who the surgeon was. He was head of GI surgery at a major university hospital. He had not performed many MALS surgeries during his long career, but was able to give me the odds of success. I did trust him and I knew I didn’t want to continue with the pain. The surgery was a success. However after 6 months the artery had crumpled up some and the top vascular surgeon placed a stent. So far so good.
In other words- my initial surgeon was not a vascular surgeon.
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