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Median Arcuate Ligament Syndrome (MALS)

Digestive Health | Last Active: May 6 8:00am | Replies (1159)

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@coffeelatte

Dear jmmb, I suffer from median arcuate ligament compression with high grade stenosis of the celiac and sma arteries. I found this out after a year of treating my symptoms through a GI doctor. In the course of a year (2016) I had most of the tests everyone else has had, in addition, my GI did a hydrogen breath test for SIBO and one for fructose intolerance. I came back with a very high score for both. I have taken a total of five rounds of Xifaxin, two rounds of Flagyl (metronidazole) and one 14-day course of Diflucan (100 mg) to address the SIBO. My weight had dropped 20 pounds in a four month period with no end in sight so I stayed the course for months taking the antibiotics and anti-fungal. And I did get a bit better. For me, the SIBO treatment seemed to reduce the nausea and stopped the weight loss. I was not able to gain weight, but it helped me to feel a bit better. I have malabsorption issues, which my GI doctor could not figure out. I had a repeat breath test last December (2016) after a full year of treatment and it showed my SIBO numbers for both methane and hydrogen had gone way down. So the GI doctor was able to address the SIBO but I did not feel much better and was not able to absorb food very well. He felt I needed to see a psychologist. I am 60 years old and I know my own body pretty well. I knew this was a physical issue and not a mental one. However, I did go see the psychologist he referred me to and she said during our visit that I needed a second opinion immediately and she got me an appointment to see a GI doctor at the Cleveland Clinic. One month later, the GI doctor at Cleveland looked over all my tests and said, "have and of your doctors ever considered this may be a blood flow issue?" Within a day, I had the Doppler ultrasound and CTA which confirmed 99% stenosis of the celiac artery and over 70% stenosis of the SMA. I was in shock and scared to death. I was referred to a vascular surgeon and a general surgeon at Cleveland who both felt I should not have the surgery (yet) because I do not have the intense pain that goes with MALS. Instead I have a constant, colicky pain, lots of gas, bloating and indigestion, but not the nerve pain most patients report. They said my blood flow seems to be adequate, but not optimal, so that is most likely the cause of the SIBO and malabsorption. I then saw a vascular surgeon back in my city and he felt the same. He said there is enough blood flow to be adequate right now. He said that malabsorption is highly associated with MALS but is not correlated. I share my story in the hopes it may help you. In my situation, it seems to be a condition that I will have to manage daily, and may or may not need to have surgery. I follow a low residue diet and avoid all fruit and many vegetables. I don't like it, but managing the SIBO has enabled me to put back on the 20 pounds I lost. I watch my symptoms very carefully and if I start to drop weight again, I will try a round of the antibiotic and if that does not work, I will know it is time to consider more aggressive treatment. I feel like the other shoe could fall at any time but I try to stay hopeful. Some days it is not possible because I feel so lousy. Other days can be pretty good. I wish you well.

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Replies to "Dear jmmb, I suffer from median arcuate ligament compression with high grade stenosis of the celiac..."

@coffeelatte thank you so much for your sharing. We are very similar. I have to be honest 2 arteries blocked at that high a stenosis is concerning. I can understand they may be concerned about an open surgery, but what about stent placement to open them? Have you seen a surgeon who has dealt with many MALS patients to get their opinion? As far as the sibo, if you go to Dr. Allison Siebecker's web site it is loaded with great information, diets, recipes links, etc. I have learned so much about the sibo from her. I am glad it seems your sibo is under control, but the bloating after eating is a key symptom for me. Many naturopathic drs seem to know more about sibo and treatment. I definitely believe the stomach issues all come from the blood flow. It is a vicious cycle, and I don't know how we get out of it. The malabsorption is also from sibo. It makes it so your body can't absorb the nutrients. I take folic acid, B1, iron, vit d, daily. Are you tired all the time? I have chronic fatigue, but I am wondering how much of my fatigue is also from the sibo, and or MALS. Well thank you for you reply and good luck to you. Keep me posted as to how you are doing.. Oh and as to the drs thinking it is all in our heads, they should take a look at this site, we cant all be crazy!!!!!HaHa