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Hi I recently had a CT scan and they told me it looked like I had MALS. I can’t find who to talk to her where to talk to and the mayo clinic groups every time I search MLS it says there’s no groups or discussions about it. I found this on Google. Where do you recommend I go to get more information from people who have dealt with this?
Replies to "Hi I recently had a CT scan and they told me it looked like I had..."
@kindel Welcome!! I know navigating our MALS group can be difficult, but I am so happy we have connected! I have MALS, and been through two surgeries, several celiac blocks. It is a condition I have lived with for many years. Although each of us is different, there are many common symptoms and problems we experience and we are more than happy to offer our advice. Since you are new to the diagnosis I think it is important to know many posts are from people who have a chronic MALS condition, however their are many successes that we don't often hear about. How are you doing? Can you share a little bit more about your experience, and how you came about finally being diagnosed? Please ask any questions you may have, we will do our best to answer, or find resources for you. Kari
Hello @kindel and welcome. This is a great place. I learned so much here. Kari is amazing. She has so much knowledge, and unfortunately so much experience. She has helped me a great deal. Do you mind sharing more of your symptoms and how you were diagnosed? Just the CT scan? That is how I was first diagnosed. It was an accident. I always had stomach issues. Told I had IBS and ulcers. One night the pain was so bad I went to er just for some pain meds or something. It was bad. They insisted on doing a ct scan. Good thing. They are like do you know your arteries are narrowed? I was like no, are they suppose to be? Next thing I know I am seeing a vascular surgeon, both celiac and SMA arteries were basically compressed almost 100%. It was different in the fact that the sma was involved. Usually it is just the celiac with mals. That is why my surgeon was surprised that it was the diaphragm crushing the arteries. He said my case was very rare. Everyone is different. A year or so later I had stents put in and then I had a balloon in the celiac. My celiac is narrowing again, but my sma has opened more. I don't know how but it does that. So we are holding off and see where I am at in 3 months. Many people however, can have a surgery and be done with it. Like I said everyone is different. Good luck! You will find a lot of helpful info on here! Jill
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Hi @kindel, welcome to Connect. I'm glad you found this discussion about MALS. Sorry that it was more difficult to find than it should've been. I've added search keywords so that others don't have the same issue. Thanks for making it easier for others.
Let's get you connected to other members talking about MALS. Please meet @kariulrich @jmmb @ruudolpho who are talking in this thread.
Kindel, I also invite you to introduce yourself to the group in this active discussion:
- Median Arcuate Ligament Syndrome (MALS) https://connect.mayoclinic.org/discussion/median-arcuate-ligament-syndrome-mals/