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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I believe it depends on the clinic doing the U/S. For some reason I believe it should be under 200.... but please do not quote me on that! I maybe remembering my last U/S results lol!! I will do some checking. This article is helpful https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4419433/
So I tried to schedule with the cardiologist but since my PCP referred me there to get an Event Monitor to check for irregular heartbeats they will not see me because they are out of those right now.. So I believe I am just going to follow up with my GI doctor because he seems the most thorough right now with trying to figure out this pain. I guess I was just confused as to who to start with first GI or cardiology! Because my PCP says to just wait it out and change my diet for now.
Hi Kari. Thank you for taking the time to read and respond. I am going to make an appointment with the cardiologist and he should be able to order those types of tests correct? I have no problem advocating for myself as a I am a super healthy 23 year old with no health history or anything major that runs in my family. So having these symptoms for months on end has not been fun! As you all know. I am located in Seattle!
Does anyone know what a Dr. uses as a baseline PSV and EDV numbers on a duplex ultrasound to determine whether or not there is celiac artery compression? I have my report but it might as well be written in Chinese. I had it ordered by a vascular surgeon who then sent me to a general surgeon who performs the surgery. He did not go over the ultrasound just the surgical procedure. Thank you in advance for any advice.
Thank You. I will take a look at Karis story,
My nutritional intake is very good. I eat pretty healthy for the most part and stay away from red meats and have been staying away from dairy and gluten to see whether the pain is coming from certain foods or certain intolerances. But nothing has helped! I used to workout 3-5 times a week. But since this pain started in December I haven't gone as regularly as I have wanted;
Yes mine radiates as well sometimes and with eating 🙁
@tclarkkkk, I agree your symptoms sound like the classic MALS symptoms, but there are several other vascular entities it could be, all which we are here to help you get through! I would mention you are concerned both about MALS or another vascular problem causing your symptoms. A CT angiogram will be helpful, also a doppler ultrasound that looks at velocities. Testing can be hit or miss, as they need to see what is happening on inspiration and expiration. You must advocate for yourself, and mentioning a rare disorder can be intimidating for some physicians, be persistent until you fully understand what is happening in your body. I am not sure where you are located, but a vascular specialist should know something about MALS. Keep us updated, figuring out the diagnosis is the first step in this very long journey. I am so happy you found us! Stay strong!! You are not alone!
Yes, I do get the pain/burning under my sternum. It radiates fiercely into my back. And it is worse after I eat or with even the mildest of exercise (and by exercise, I mean walking across the room). 🙁
I would definitely mention to be testing for MALS. I have been suffering since 2015. This is my fourth GI doctor. This past Thursday I had a CT scan with contrast to confirm MALS. I am waiting for the results.
Welcome to Connect, @tclarkkkk. I'm certain that Mentor @kariulrich will share her insights, and may be able to best guide you. In the meantime, you might wish to read her story:
– Grieving the Loss of Your Physician – Experts by Experience https://socialmedia.mayoclinic.org/2018/04/06/grieving-the-loss-of-your-physician-experts-by-experience/
I'm also tagging Connect members @jmmb @jjrenn @plucky who have written about their struggles with a MALS diagnosis.
@tclarkkkk, may I ask how is your nutritional intake?